My New Normal

And now A Moment At Big Lots....with Trish the Great.

2012-01-31T12:01:00.002-05:00

So I picked Jakob up from school today. I had to go to Big Lots to get shipping stuff because I sold some bibs.

As we are walking throughout the store Jakob and I are talking. I understand him about 75% of the time. When I don't know what he is saying I will reply with something like "Oh reallly?" or "Oh okay I see". This used to always work but he recently has realized that my replies don't always match his questions or statements. He will say "Mommy, NO...." and then repeat whatever it is he is trying to say about 800 times. Sometimes this ends in a tantrum (him not me) and others I will distract him with something else OR I'll actually figure out what he is saying.

I often wonder what other people must think when they see me talking back, with interest to a kid that to them is just mumbling gibberish.

So I get to the register after shopping for about a half an hour. Jakob was in the back of the buggy "hiding" under the pillows I was buying. He would get under them and then say "Mommy I hide"....that's my cue to say "Where's Jakob?" to which HYSTERICAL LAUGHTER ensues. Yes he STILL loves this game...and YES he is terrible at hiding.

As the checker was ringing up my items the woman behind me said

"Ma'am you are really good with him, it's so sad these days I usually see parents out with their kids and they are so terrible and hateful to them. It's nice to see someone who loves her kid".

It took me back for a moment because seeings as all we have been through the last month it was ironic to me that someone THAT DID NOT know me was telling me that I was a good mom. I honestly got choked up.

I told the lady thank you and that Jakob was a much loved, much wanted and waited for little guy.

With that Jakob started clanging the seat part in the buggy SO obnoxiously loud AND embarrassing that I immediately wanted to snap into TYRANT momma mode but realized this would have ruined said moment.

So instead I just said "No SIR" FIRMLY.

Jakob's reply?

"MOMMY I HIDE!!"

God I love this child.

I'm a kick ass mommy too.

Paranoid Schizophrenia.

2012-01-30T09:47:00.004-05:00

The guy that called me out on why I was in the nut house on my first day was a paranoid schizophrenic. I knew it BY day two of being around him. At first I just would listen to him and the ENTIRE time think WOW this man is most definitely a lunatic.

MOST.

DEFINITELY.

He loved to talk about money and of course DRUGS. Marijuana, Cocaine, Methadone, Suboxone...you name it he talked about it. He boasted about what a dealer he was. So in honor of that I will call him Johnny. Why Johnny you ask.....because Johnny Depp played a DRUG LORD in Blow. lol He talked about how rich his family was but they were so greedy they wouldn't even send him $10 Grand to help him out. I just shook my head and said HOW AWFUL!

He told me that he was homeless and had been for 33 months. This upset me because the man ALSO had PTSD and was an Army Vet (there were so many vets there people.....so many...all of them with PTSD....made me sad). We really should take better care of our military people.

Johnny told me that the VA was giving him a hard time because they said he was not cooperating with the program. You see he was there to get changed from Methadone to Suboxone. It would be much cheaper this way and apparently the Suboxone has a lesser euphoric effect than Methadone.

Anyway.

He was taking THOSE meds just fine.

He didn't want to take his anti-depressants and kept refusing them. So he was being a non compliant patient. He told me if he took his Effexor the FBI would start tracking him.

He can't have that happen because he IS a huge drug lord you know...

He told me about this one day when he was down in Miami Beach years ago. He found a washed up BALE of marijuana on the coast. Said it was STILL dry and he drove for four hours to get home to show his friends.

They all had goofy grins on their faces for days after.

The night before I was to leave Johnny and I were sitting outside the therapists office waiting our turn to go in and beg to go home. Say how great we felt and that all the visions are gone.

I asked him how he ended up there. He told me that he had been getting better as far as using was concerned and he was starting to make some money. No, not from a job. From selling drugs. I do believe he was selling cocaine and pot. He had 110 contacts in his phone...you know people he sold to. He went to a bar, got drunk and someone stole his phone right out of his hand after he had passed out. FOILED AGAIN BATMAN! He was infuriated someone took his phone with all those contacts. He got a phone a month later and had built back up 88 contacts. He was doing well again. He went out and had being drinking and doing drugs all day. He went to the bar, had some drinks and partied then began walking home. The next thing he remembered was waking up UNDER water and someone pulling him upwards and out.

He was enraged his phone was lost or stolen in the shuffle......you know the shuffle that saved his life?

sigh.

So he was down and out, no phone again and all his contacts LOST.

I learned quickly to just agree with him. Back him up...whatever....because it's just easier that way. I mean I don't think arguing with him would have bee productive AT ALL.

He got serious and asked me why I was in there. He obviously did not remember asking me on the first day. I told him I was going to shoot myself in the head. That or slit my wrists. He looked at me and said "REALLLLY....IS THAT TRUE?...ARE YOU KIDDING". I just shook my head and said YES it's true. Then he asked what would make me want to do that. I took a deep breath and said "I have a daughter....she's almost eight, she can't walk, talk or eat by mouth and she has seizures that could kill her...." He just said again "Nooooo....your kidding me right, that's not the truth.......reallly?" I said Yes, of course, I wouldn't make something like that up.

Then the conversation took an abrupt turn when he said

"How the heck are they letting YOU out tomorrow but they are keeping ME here another week........I have to go talk to someone about this......"

He got up and stormed away while I snorted to myself realizing that a Paranoid Schizophrenic just suggested that I am CRAZIER than he?

Maybe he was on to something.

Finding Our New Normal.........Again.

2012-01-28T15:11:00.007-05:00

Things have been pretty good since I got out of the nut house. We are always adjusting to our life though. A friend of mine was just saying that as special needs parents you get used to one normal and once you are finally adjusted to a new normal then BAM it changes again. Always changing....always adjusting.

With Makily's EEG last week and Allen being off we still aren't on a "regular" schedule.

Monday will be an exciting new start for our family.

Allen has been working over the road as a truck driver for 14 years, 13 of which we have been together. When Makily was born nearly eight years ago we planned on him doing something local instead of over the road. When she was born we had no choice though because there was no way we could have taken a cut in pay OR lose our insurance.

Allen found out on Friday that he is going to be driving locally, meaning only in Florida. He should work basically 5AM to 5PM Mon- Fri and be home EVERY. SINGLE. NIGHT, off on weekends!

Trying to help Daddy fix the TV.

This takes a incredible amount of stress off of Allen as he has fears of what may happen at any time with Makily.........what if he is hours away? I've had to make that phone call a couple of times and believe me, it's never pretty. Then he drives like a bat out of hell all the way home and I worry not only about whatever is going on with Makily at the time but if Allen is in his right mind enough to get here safely. Very Stressful!

I have noticed positive changes in Makily since lowering her dose of Keppra and increasing her Topomax. She picked up a toy that was sitting NEXT to her and put it on her lap to play with it. Typically Makily DOES NOT pick up anything on either side of her TO PLAY with....it usually has to be in her lap. I saw her do it once and then asked her to do it again......and SHE SURE DID. That's progress. That's understanding. This kid is amazing.

Things really have improved in so many ways. I've had many people that have noticed the shift in my mood and how I handle certain things. I'm less hot headed and more patient. I find myself letting things go when before I would have probably made a big deal out of it. I ask myself "Is it really that big of a deal?" If the answer is NO I usually just move on.

I was really worried that people would be judgemental of me when I came out and announced I had been in the nut house. I'm shocked at how much support I have gotten.....that being said I have had a couple of people give me the pitiful eye and say "How are you doing?" like I am going to break out sobbing and spilling my guts at any moment.....okay so maybe they know me more than I thought! lol

My Kelly concert is THIS Thursday. Can't believe how close we are getting.

We went to the Market on the Square today. I found Makily an AWESOME tutu for her birthday party this year. It's ADORABLE. We got some candied jalapenos and some fried plantains too!

We also found this living room set. It was listed for $165 and we ended up talking them down to $130.....LOVE. A. DEAL.

For those local this was at Brother's Keeper down on the Square. They had some really great deals in there today and usually always do.

My grandmother is still having a hard time adjusting to the assisted living facility. Please keep her in your prayers. My mom and sisters are trying to do the best they can for her but she is just not very happy right now and so it's hard on everyone.

Overall I am happier than I have been in years. I have seen so much resolve in the last two weeks that I just know things can only get better. I am going to do another entry about life in the nut house soon. I know a lot of my readers are LOVING that part of my blog. I have tried to vlog but WOW it was bad. I'm gonna work on it a bit more though. I think it has to be spur of the moment rather than me trying to talk about one thing in particular.

We will see.

Home Again, Home Again, Jiggity Jig.

2012-01-25T14:04:00.002-05:00

So we are home.

The doctor discharged us and we were out of there in less than 30 minutes.

The nurses were all phenomenal.

Everyone was really friendly.

The Neurologist says that her eye drooping does not correlate to anything abnormal going on in the brain. This is good news. I'm pretty comfortable now assuming that it's just muscle weakness but I will eventually make it over to the eye doctor with her to confirm this. Since it's only prevalent when she is sick or tired I doubt they will do anything about it.

For some reason she stopped having the abnormal brain spikes. She had them on Monday a few times and then NOT ONE on Tuesday. Since she is so sleepy he agreed we should change the medication. I'm nervous but I think it's the best choice. We are going to increase her evening dose of Topomax and slowly DECREASE the Keppra until she is weaned off of it. I'm comforted knowing that we have emergency medication AND that she is on an apnea monitor at night. If something happens we will catch it and can help her. I don't like messing with the medication at all but at this point it's been nearly A YEAR and she's just as tired today as she was back when the initially put her on it. It's just gotten worse. The doctor said by now if that side effect was going away it would have already.

He is going to see her in the office in a month and set up another EEG to make sure the spikes are gone completely and that the increase in Topomax is working.

I have to add this. Her Neurologist was so good to her. He said/sang something in Indian to her. I think it may have been a prayer, whatever it was I thought it was incredibly sweet. Then he picked an eye booger out of her eye with his bare hand and she giggled.

Made me want to hug him.

The only time she cried the entire two days was when they had to remove all the leads from her hair/head. It's left some read marks from all the glue. She cried really loud which she never does. Poor baby girl.

I'M REALLY PISSED OFF YOU GUYS.....NO REALLLLY!

I'm glad part of this mystery is over but I am nervous about the road ahead.

Whatever happens though we will just keep on going.

That's just what WE do.

Raw Thoughts and Sushi.

2012-01-24T14:08:00.004-05:00

That is my favorite title I do think.

Every time we have been inpatient there has been at least one other family that we have connected with them. It's almost impossible to NOT connect with each other because let's face it as a special needs parent we are trying always to bring normalcy to our kids. Most people just take "normalcy" for granted. Understand that when I use the word normalcy there really is no such thing, I am talking about the VERY BASIC FUNDAMENTALS FOR LIVING SELF SUFFICIENT ONE DAY. Breathing, eating, SWALLOWING (it still stuns me to this day how difficult mere swallowing can be to an immunodeficient child). I could go on and on about this by I will get to my point.

Today I have taken at least four....maybe five breaks out of this box of a room. Every time I venture out something has made me reach out to people. Say things I wouldn't have said but only would have thought but I said them out loud because I knew it would make the other person happy. And ya now what? It's made me happier.

Please know I realize that makes me sound like Mary freaking Poppins but I assure my dear friends (angel faces as Jenna Marbles would call you)I ain't Mrs. Poppins. (I not so secretly love you Jenna!).

This picture makes me LOL FOR realz.

Don't want to be either. I'm starting to like myself again.

Tonight I went downstairs to get food and kept looking at the sushi, I've never had it. Normally I would have just gotten something familiar. Today I BOUGHT THE SUSHI. As I was going back to the elevators with my food I heard a mother saying "Come on Nicholas....now the elevator is here....". I stood holding the elevator....and holding....and holding......*she didn't ask me to but I'm still holding it lady.....and holding........ANNNNND around the corner comes a little boy barreling towards me. He trips and falls, he even bumped his head pretty hard when he fell. I waited for screaming and crying but it never came. He jumped RIGHT up and said "I'm fine" and got on the elevator with his mom quickly following behind. It was then I realized this boy had cancer (cancer kids break my heart). Initially I thought he was three or four until I heard him talking and saw his face......he was totally bald. He was likely closer to six'ish. He pushed the button for the second floor on the elevator and grinned at me.

I looked at his mom and said :

"Don't you just wanna carry him around and keep him in your pocket and snuggle him?" She grinned and said "OH YES all the time, every day but he doesn't want to be still." I said OH I know all about that I have a little boy. I told her how cute her son was and they got off on the next floor. The other woman in the elevator look on her face that I did. I smiled and said "Ya know I have been in and out of the hospital the last eight years with my daughter and each visit there is usually one kid that stands out and I always will remember....that was that kid....he just made me want to.....

With tears in her eyes she interrupted me and said:

"Carry him around keep him in your pocket and snuggle him forever?"

I looked at her now with tears in my eyes and simply said "Yeah".

The elevator door opened to my floor and as I walked out I heard the lady say

"God Bless you and good night".

Preliminary Partial 48 Hour EEG Results.

2012-01-24T10:24:00.002-05:00

The Neurologist just left.

The Neuro examining her.....best pic I could get.

He told me that Makily is still having abnormal brain spikes concentrated in the frontal lobe of the brain (that's where your personality is ..sad face). He says that those brain spikes can spread throughout the brain and cause a seizure but at this point they have not seen any actual seizures.

He was concerned about the eye droop and stared at a photo of the drooping/turning out for quite a while. Then he examined her and stared at her eyes for a while too. She did the eye droop thing in front of him.

RIGHT Eye droop thing.

I expressed my worry about the Keppra keeping her so tired all the time. She's actually regressing and it's horrible for her and TERRIBLE for us to watch. She's always wanting to lay down now. I sit her up and she has figured out how to lay back without hurting herself. This is not normal for her to always want to be laying down. It's been since the start of the Keppra. She's always been sleepy but this is much worse.

The doctor wants to do another day of EEG (today) and then review the results again. He is also going to consult with his team to figure out something to change the Keppra to. He thinks the Topomax is ideal for her since she has done so well on it for so long. She had break through seizures last year though so that is why we added the Keppra.

I'm okay but bummed a little. I was hoping he would say all was fine but I should know better than that when it comes to my "abnormally normal for her little girl."

When I went to take her picture again.........she totally put this in front of her face. bahahahhaha

I love you Makily.

Get That Dirt Off Your Shoulder.

2012-01-24T04:54:00.006-05:00

So yesterday blew.

It really wasn't that bad but being in the hospital totally has affected my mood. I cried a lot yesterday. Had panic attack Sunday night and I shook so bad my teeth chattered.

I really thought while it was happening "wow my teeth are chattering....that's impressive."

The nursing staff has been great. Everyone is very professional and friendly. Makily is handling it all well and is having a cartoon and toy fest.

She actually lifted her head on her own here and there for the tech that hooked all the electrodes to her head. She didn't cry for one second. I'm amazed at this child that has matured from screaming the the second they started hooking her up when she was little to seeing her actually do what SHE can to help. She's amazing. Always has been and always will be.

The hospital definitely brings back some scary memories. We are in the peds unit (we have always been in the PICU here so it's a nice change). It's adjacent to the PICU though and the elevator is right in the PICU hall. As soon as I hit that hall I was overwhelmed with memories of her heart cath, how serious it was, how scared we were.....and again how AMAZING she is. Always has been....

Yesterday we had a moment with Jakob that broke my heart. He came in the room and looked at his big sister. She was in a hospital gown (ugh makes me wish even more now I had remembered the pink girly gown I had made for the trip specifically), one of the green ones, on green sheets and with her head all wrapped up to hold the EEG electrodes in place. Jakob looked very sad and said "Mommy, Kily dead.....Kily dead?"

*long pause as I try to fight tears*

"No baby sissy is just sleeping."

Then he got up on her bed and rubbed her leg and said

"Kily night night?"

"Yes baby Kily night, night."

SOB

SOB

I didn't even KNOW that Jakob even knew what "dead" was so the entire comment really upset me. My nephew had asked the same question years ago when Makily was sleeping really hard. He too was relieved Kily was okay and gave her a kiss on her forehead in relief. She's so fair skinned and if she is sleeping hard and catching flies, 'I can see how one would think that, especially a child.

After that conversation I began to wonder if we are somehow scarring Jakob from exposing him to the medical side of all this. I wondered if he is sad that lately Mommy has been gone here and there. My friend Cheryl Paquette shared an entry on her blog written by her daughter Emily. It details her outlook and view on her brother who had a genetic condition that was similar to Makily's. Sadly her brother Bryant passed away after LIVING a full life for 20 years when his parents were told he'd likely die in infancy. Another awesome kid always was......and always will be.

I am still working on vloging. It's harder than I thought because I find myself rambling and wondering if I am just rambling or if I'm interesting or not. LOLOLOL Give me time I'm working on my stage fright okay?! That and every time Allen I watch my tutorial on bib making we both end up hysterically laughing at me. I crack me up with how dingy I can be.

So while yesterday was hard, I am determined for today to be a good day. I brought a "learn to knit kit" and I'm actually gonna try to do that. Another special needs mom of mine will be here today, her daughter is having surgery so keep her in your thoughts. We will be able to keep each other company though so that's nice. My friend Whitney is bringing me dinner tonight too so that's plenty of distraction from anything sad and believe me friends THERE IS LOTS OF SAD at the pediatric hospital. Yesterday while downstairs I saw a woman with a baby on her hip. She was pushing on IV pole and baby was hooked up to two IV pumps and a pulse ox. The reality of that situation was HEAVY. I wanted to hug them both but decided against it. lol

Later on there was a lady with a TEENY baby in his carrier. He had oxygen on his face and was just adorable. I walked by her twice and then had the overwhelming urge to say something to her. I finally did. I just told her how beautiful he was. She told me he had been a 24 week micro preemie. He was seven months and TEEENY. She said he had all sorts of gastro problems as of late and she didn't understand why. He had a g tube also. All the problems she described Makily had been through at that age so I told her what I knew. She looked at me dumbfounded and said "How is it you can give me all this information but the doctors can't?" I jokingly told her I graduated from the medical school of Google. I told her to watch the nurses, ask questions and research EVERYTHING. That's how we got through it. I gave her my number and I hope she uses it. :-)

I got a phone call yesterday that brightened my entire day. It was great chatting even though it was about rectal water, you know who you are and I do hope we can do it again....lol Love you.

So while some of yesterday was emotionally draining it had it's bright spots and I am feeling better today after a good long nice night's sleep. I took a sleeping pill last night and wow did it work like a charm, I usually can't sleep in the hospital....if I do it's fit full.

I love wearing her name.

I'm gonna get up this morning in a little bit and get that dirt off my shoulders and continue trying to be positive.
*WARNING LYRICS.*

I love the new start I have made and I am determined to keep moving forward and leaving old, sad and negative people and things behind. It's hard, it's sad sometimes but DAMN there is just too much living to be done to be so damned depressed.

I am Super Woman you know?

I will leave you all with a G tube Fail photo. Enjoy.

hehee

Love to All,

Trish

The Big Day.

2012-01-22T08:45:00.003-05:00

Today Makily and I will head down Orlando to say the night in a hotel. In the morning we will be at Arnold Palmer Children's Hospital to start her 48 hour EEG.

I am a little anxious just about BEING in the hospital with her as it's been quite a while since we have been inpatient. Sometimes that brings on flashbacks from the past and it depresses me. This will be the true test on HOW STRONG I have become and how much my medication works.

The good thing is I have a friend Whitney that is bringing me dinner on Tuesday night and is coming to hang out. That will definitely break the boredom for me and The Princess. My other friend Kiley's daughter Briella is having surgery Tuesday morning so I am sure we will be back and forth in each other's rooms and I'm sure between the both of us we will drive the nurses batty! lol

Everyone is noticing a difference in me. I'm slower to get angry. I'm able to catch myself now and I say "is it really THAT BIG of a deal?" in my head. If the answer is NO then I just say "meh....no biggie." Allen even told me yesterday how much more laid back and cheerful I am. this makes me happy.

I went to a birthday party for a friend yesterday and I was so relaxed and had such a good time. We did karaoke and drank, and ate and had a great time. Jakob ran around like a maniac and Makily enjoyed watching TV and playing with her toys.

My next entry will be the beginning of the video blog I am going to do for this hospital stay. I'm actually kind of excited.

I kind of feel this trip is going to be pivotal for me in so many ways. I want to see what coping skills I have perfected (or not) and I really do want to know what is going on in Makily's brain and if she is having absence seizures like I think. I don't care what kind she is having.....I just want them controlled. PERIOD. They scare the hell out of me.

This is a example of an absence seizure. Makily does something similar but since she can't walk or talk and since they are so vague like you see in the video it's hard to determine.

If anyone wants to come visit call me and let me know. I'll give you a time when we aren't doing anything and you can visit my girl. I'd like to keep this to the people we know or have met personally.

This week will be pivotal for me. It will be pivotal for Makily and her seizure control and care.

I wanted to say how thankful I am for all the comments and for all my blog readers. The maxi pad post got 752 hits in ONE day. I was baffled as it was only getting about 80 hits a day before I started blogging again. I'm going to keep it up. It's helping me in ways I can't even describe. It's therapeutic.

Love to you ALL,

Trish

I love how I look so serious and Jakob is chilling in the background. lol

A TUTORIAL BY MWAH.

2012-01-20T23:20:00.006-05:00

I've had requests to do a tutorial for Makily's bibs.

Several months back I started making bibs for Makily. Then I gave some away to ES parents and then they started ordering them.

So here's some kids modeling my bibs........

All of the above children have ES like Makily. Aren't they all SUCH precious angels.?

I had some friends asking me to do a tutorial on how I make the bibs and I decided I would do it. I'm going to VLOG our visit to APH so I figured I' do a tutorial to get my feet wet.

Here it is...how to make really absorbent bibs.

Already Gone and The New Shrink.

2012-01-20T09:14:00.003-05:00

So one of the things every therapist has told me since talking is that I need to do things for myself. I do everything for the kids but little for me. When I do I half ass it or do it really cheap because I FEEL AWFUL spending money on me.

Well one thing I had said that I wanted to do THIS year was see THREE concerts. Kelly Clarkson, ADELE and Eminem. Yes I realize I probably will not fit in at the Eminem concert and I likely may be killed BUT alas I digress.

I decided yesterday to look up when they were touring. Adele unfortunately broke her voice last year and cancelled her entire tour to recover from surgery. Bah. Eminem claims that he will never tour again (I GET TO LIVE!).

My Kelly WILL BE IN JACKSONVILLE in just a mere:

13 DAYS!

So I looked at the seating chart and the ticket prices and was excited about maybe getting a seat close enough to actually see (with my glasses that I need to get...and quick) that IT REALLY is Kelly Clarkson up there and not some random person.

I was shocked to see there were several seats up pretty close and then I saw that there were still seats IN THE PIT available.

When I looked at the ticket price though I said no way!

Row 2 PITT CENTER tickets were $145....A PIECE so THAT times two for someone to go with me.

I immediately started looking at other seats farther away because THAT JUST AIN'T ME spending THAT kind of money on a concert....and for MYSELF? NO WAY JOSE.

Then I could hear everyone's comments about my not doing ANYTHING for myself. I do it all for the kids. I don't spend money on me. I need to turn over a new leaf. I want to do things I have never done before. I CRAVE once in a lifetime experiences, but oftentimes don't get them because I just don't want to leave this kids, spend the money...etc etc etc.

So.....I asked Allen what he thought about me going and he said it was a great idea. Then I told him about the seating and ticket prices. He thought for MAYBE 2.5 seconds and said "You are going, GET THE GOOD SEATS."

SOB

SOB

So I did.

I bought two tickets to see my girl Kelly on Feb 2, 2011 in Jacksonville 2nd row center pitt seats.

AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!

I am ALREADY GONE in my head about it (incredibly cheesy pun intended). I can't wait to go. I am so grateful to Allen for letting me and not caring about the money. We had some Christmas money left over and I used that so I felt a smidge less guilty about paying that much but I am proud I made myself do it and I JUST CAN'T WAIT!

Let us take a moment and revel in how gorgeous Kelly is in this video. I especially like the dress and necklace she has on in the parts she is laying on the couch. If it were my day for girls she would be my girl crush FO SHO!

On a different note I went to my first appt with my new shrink yesterday morning.

It went WELL.

I do not know her life story or really any personal information about her. Much different than my first and old shrink. LOL

I told her EVERYTHING. It was hard but I just spilled it all. She listened and empathized. I actually had seen her once in the hospital so it was cool that I ended up with her. I didn't think I was going to see her as we had made an appt with someone else in her office but I think she decided to take me on instead.

Either way I don't care.

She encouraged me to continue challenging all my negative thoughts about myself. I do it daily and honestly since I've been doing it, the thoughts are becoming less and less. I'm obviously working on doing things just for me too. I am not the horrible person I had convinced myself I was. I deserve to have some fun and to pamper myself sometimes and Allen is ALL about me doing it.

I had been having trouble sleeping the last several nights. They added an extra half dose of my Effexor at 5pm. Since it's a new dose I was not always taking it right around 5.....I would forget and then take it at like 8 or 9 even. She said I could take it as early as noon instead and I slept SO MUCH better last night. Somehow it was keeping me awake.

She also diagnosed me officially with Anxiety, Depression and PMDD.

I had to laugh when I read that PMDD only affects about 3-8% of women and YET AGAIN I get to fall into that tiny percentage.

Am I talented OR WHAT?

More TMI here but honestly I was admitted to the nut house on Sunday and got my period Wednesday.....so yeah my period makes me crazier than I already am. hooray.

I especially like the "leave town" option.

I personally think doctors need to do something when your tubes are tied to make you NOT have periods anymore.

Just sayin'.

Trish Caldwell, HIPPA Officer and Maxi-Pad Police.

2012-01-19T00:34:00.011-05:00

If you hadn't already realized it from reading the title of this entry THIS ONE will be A LOT of TMI.

Read at your discretion.

OH and by the way if you haven't read my last several entries PLEASE refer to the link list entitled "Psych Hospital" on the right.. Things will make more sense that way.

Once I took the Ativan I began to calm about 30 minutes later. I took a nap and was woken at 10 am and told to go to group. I go where they tell me and we sit. No one is there to lead group. We all sit looking blankly at each other. One lady was pretty much catatonic and they set a breakfast tray in front of her. Then walked away.

Not the catatonic lady but a good representation.

The woman just sat there...not eating and no one was feeding her. After about 10 minutes another patient went up to her and tried to feed her. A few moments later a tech came in and yelled at her for doing that and said DON'T FEED HER she's a choking hazard. I immediately wondered why they gave her a breakfast tray then?

I finally went to the desk and asked who was leading group. I was told "Audrey" was. A few moments later Audrey came in. One of the other patients asked her if she was doing group. She said she was not sure but that if she was supposed to be she couldn't because she had a family waiting for her. Then she just walked out leaving the ten psych patients to sit there and wonder what to do. I went to the desk and asked who was leading the group and they didnt seem to know either. I said well if there is no one to lead group I'm going to take a nap. I was told not to do that....someone would be in to lead group. No one ever came until the last five minutes. An orderly came in and basically said to make sure all kept taking our meds even if we felt better.....

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Is this what I just went through hell for?

I want my money back.

Anyway, group after that was much better but that particular therapist did it again later in the week except this time she was 20 minutes late, had no topic to go over and wanted us to come up with something to talk about.

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#didntrealizeiwasgonnadoherjobforher

#doessheknowmyoldshrink?

That evening I realized I was getting close to CD1. For those confused CD1 is commonly referred to in the infertility world as the first day of your period.

OH GRAND!

I debated about this entry too but when I thought about it rationally I said "Trish you are a 34 year old grown woman.......everyone knows you have a period....get over yourself.

So I did.

Anyway.

I realize I'm going to have to ask the assholes for maxi-pads......

While disturbing I thought this appropriate. A dancing maxi pad. Yes Virginia, you can find ANYTHING on the internet.

ugh.

I get up that morning and actually felt chipper. I put makeup on and did my hair for the first time in a long time. I went to the desk and said to the nurse "I need to speak to a female staff member privately please". She gives me a strange look and says okay. She says to go to my room and wait. #suddenlyifeel10

The bitch comes to my room pulls the door WIDE open and says "What do you need?" In the meantime people are walking by the room door, male staff and patients alike. So I tell her I want to talk to her in private and to please close the door.

She tells me no.

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I asked why and she said it was against policy.

I told her I understood why male staff could not close a door with a female patient (as I found out the night before when a male nurse took me into the game room with other patients walking about to go over my entire history and physical I said I want a room with a door and he refused citing "THE POLICY.") but I DID NOT UNDERSTAND why she wouldnt close the door as we were both females.

She reiterated the policy. I told her I was appalled at how BLANTANTLY she was disregarding my right to privacy. She was breaking every HIPPA law there is and THEN some. I went on to say that EVERYONE there had broken confidentiality rules and I did really wonder HOW they got away with it.

With that she said the only OTHER option was to get another female nurse to come in WITH her. I said "That's fine, let's do that." She gives me a SHITTY, smart ass grin and in a CONDESCENDING tone says "Sure I'll get someone for you RIGHT NOW." Then she walked out.

I BECAME LIVID.

I again was shaking and anxious. I couldn't believe how blatantly rude this woman had been to me ALL BECAUSE I simply needed her to get me FREAKING MAXI-PADS and it was the ONLY way I could get them. Believe me if I would have handled it myself I sure as hell wouldn't have bothered that bitch.

After pacing in my room and thinking about it a few more minutes I decided I would go down to the desk. I didn't have a plan of what I was going to do or say. I just knew I had to say something and also REALIZED the good part of being a mental patient in that moment. If I went down there and screamed at her for being the huge bitch she was, they'd just dismiss it because I AM CRAZY YOU KNOW!? I might even get a nice nap from some chemical sedation and a padded room.

WINNING!

When I approached the desk the bitch was standing with her back to me bitching to her co-worker that SHE WAS NOT going in a room alone with me and I just wouldn't listen.

I stood quietly until she turned around and I just shook my head at her and said "I heard everything you JUST said (I hadn't heard everything but I sure wanted her to think I had). You should be ashamed of yourself." Then I asked who the supervisor was. One of the techs said she would be in and he would let her know I need to speak to her in private.

I went back to my room...fuming mad. I paced again and then "Carlton" came in and said the supervisor was ready to talk to me.

I asked if she was going to talk to me in private or not. He said she would.

I got to the desk and she asked if I was Patricia. I said yes and she said follow me and took me into the same room right across from the nurses station WITH NO DOOR.

I stood outside the door, shook my head and then rolled my eyes.

Then I said "What part of PRIVATE do you people not understand.....THIS (and I outlined the missing door frame) room with NO DOOR is the OPPOSITE OF PRIVATE!" (I was really working on that padded room/chemical sedation combo).

Doesn't it look COMFY? lol

She came out of the room and said well we just don't go in a room alone with a patient Ma'am.

sigh

Then she went back to the nurses station while I bitched about how none of them knew what HIPPA was and that I'm shocked no one has ever reported them. A new bitch, (we'll call her Big Flower Head or BFH for short) decides to put her two cents in. Without even looking up from her paper work she says "We just don't go into rooms alone with patients, it's our policy." I said well your policy is against the law. Then she continued to explain...while NOT looking at me and continuing to write, that things have happened in the past and they have to keep staff safe.

At this point I understood her urgent need to keep staff safe because I wanted to jump over the desk and smack her hard enough to make the big flower fly out of her hair.

Okay it wasn't THIS big but it was close.

I told them they all needed training on how to treat patients, then suggested that they should all be on the other side of the desk so they would learn how to treat people. BFH then said "you shouldn't worry about other patients here, you need to worry about you and your recovery."

WHAT?

HUH?

That doesn't even make sense as a reply to what I had just said.

So I said well if you were listening I said YOU NEED TO LEARN HOW TO TREAT PATIENTS, I didnt say I was worried about anyone else.

I finally looked at the other nurse and said "FINE, I guess we'll go in the stupid room with no door and I will whisper my private business to you......you know like we are all in kindergarten."

I walked into the room, shaking and annoyed, looked at the nurse and said "I should be getting my period any second now and I need some damn maxi-pads."

Her entire demeanor softened and she apologized for everyone acting like they were. I honestly had felt like I was back in high school and they were a bunch of mean girls.

She said she would have one of the techs get them for me.

A few minutes later while standing at the desk in line for meds the idiot tech openly handed them to me in front of about 10 people. The next day another tech did it in the hall (you only get two at a time so I had to ask multiple times....SERIOUSLY.)

I wrote the incidents on a patient advocate form and I'm hopeful they do something about the lack of ANY PRIVACY in that place at all.

And YES I realize that I went through all that hell to keep my period quiet....then I blogged it.....so sue me.

So that's my story on how I became a Hippa Officer and yes THE MAXI PAD POLICE.

Turning Tables.

2012-01-18T19:20:00.002-05:00

I'm so happy I can't breathe.

Does that make sense what I'm saying?

Today I realized that while I feel better overall, all those things that drove me to where I was are still there. Still in my mind, my heart and my soul. Sometimes I feel the hurt from that creeping in and I've been good about pushing it down and distracting myself. Today was harder for whatever reason, and that's okay. I've learned you can't run from anything. Not from life, not from your feelings and not from love. Those things will ALWAYS be there whether you want them to be or not. Love is NOT ONLY a feeling but a choice you make. It is an emotion and some have it, some don't.

I can't run from the love I have for Makily, it's there in fact deeper than any other feeling I have ever had but that is what makes it frightening because when she is gone....then what? What do I do? I don't know how to be anything anymore except to be Makily and Jakob's mommy.

Example of LUST and NOT love. LMAO!

Anyway.......
I've been printing pics of the kids and Allen and I. I'm working on framing them and putting them up.

I got the CUTEST squeaky shoes for Makily off ebay this week. I want a pair for myself they are so cute...lol. I just ordered her some bows too.

She got the darker pink pair.

If you noticed from last night pictures Allen cut Makily's hair while Mommy was in the nut house. So when Mommy got home she was shocked that baby girl's hair was substantially shorter and rather unevenly cut. She has layers people. He put it in a high pony tail and then snipped ABOVE the rubber band.....sigh.

She's gorgeous no matter what though.

My friend Debra called me today and asked me to collaborate in writing a book. I was honored when she asked and almost immediately said YES before she had the question out.

Debra and her boys Wesley and Memphis.

Allen and others have totally been encouraging me for YEARS to write a book and so I'm actually excited about having someone to do it with. It sounds like such daunting task so when you have help and someone with some experience it makes it more attainable I guess. The book is going to tell "the good the bad and the ugly" of special needs parenting. I will leave it at that. But as we put that together I will update everyone.

Makily's 48 hour EEG is on Monday morning. I am taking Makily up Sunday and will be staying overnight in Kissimmee in a hotel. This way I don't have a far drive in the morning and we can have a mommy/daughter trip. I'm actually REALLY excited about having this time with her alone even if it's for an EEG. sigh. I'm also excited about VLOG'ing the trip. I've never done that before and this trip in particular is a good one to start with seeings as we aren't in an emergent or life threatening situation.

Makily with post EEG/Sleep Study Hair.

I'm going to start an entry about more on my experiences at the nut house tonight.

The kids go back to school tomorrow so it will be nice to start to get into a routine again. I am going to try to start jogging again in the morning. I always feel better when I do that.

I just realized I should have taken my afternoon meds three hours ago. Whoops. I got up and took it but I think that's why I'm having trouble sleeping?

I realize today that my head is all over the place. My life has changed so much in the past three months and sometimes I feel like my head is spinning trying to keep up.

On another note both the kids have been incredibly sweet since I came home. Jakob still has his moments but I can't complain for the most part.

Making Progress.

2012-01-17T21:05:00.003-05:00

I've had TWO amazing days....TWO DAYS...IN A ROW.

I haven't felt THIS good in YEARS......it's amazing how low I had gotten. I forgot what it felt like to be happy.

I had stopped doing my hair, wearing makeup. I looked like shit all the time. I'd go out with my hair up in a ponytail..a messy one and throw on a t shirt and jeans. The last two days I have WANTED to "get ready". I have discovered I don't even really have to blow dry my hair anymore. I realized this because they took my blow dryer upon admission citing I may try to hang myself with it.

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Any way I just scrunch it and leave it wet and within an hour it's dry and looks good. I'm rambling about my hair..........ugh.

One odd side effect of the meds I have found is I can't remember ANYTHING. Ugh. My short term memory is G.O.N.E. I honestly can be mid-sentence and say "I'm sorry what the hell was I just talking about?" It's embarrassing and makes me look crazy....sigh...I guess I shouldn't care what it makes me look like though right. Screw anyone that thinks any less of me. Kiss my ass.

In forcing myself to just be ME and not worry about what everyone is thinking I feel kinda free. I do my makeup and have gotten TONS of help and tips from my friend Trish (she does freelance makeup and awesome work. She has done my face for Halloween, New Years and other special occasions and I always get compliments.) Again I'm rambling.....about makeup. Anyway I do my hair and get ready to go these days and OH does it make a big difference. When I get uncomfortable or start to worry about if I look fat in something or if someone will like me or not....I just say IT DOESN'T MATTER in my head and then I just don't care. That's nice.

I am doing so well and feeling so great I'm finding myself worried that this is just a high from starting the new dose and new med and that I will take a nose dive into the dumps once my body adjusts completely to the medication. Again....I've caught myself worrying about a "thing" I can't control. See, let it go....pick it back up again. It's a constant battle in my head.

I went to Joann's today for the first time in like two weeks. I wanted to dance a jig of glee looking at all the fabric AND seeing that it's on sale. Seriously though I was in fabric heaven. Anyway I got some really cute fabric to make bibs with. I have an order I need to fill soon, so I got some new really nice fabrics. Then I finally got up the nerve to get a pattern to make a dress for Makily (I'm a rebel, yes I know). I picked out the fabric and the ribbon and stuff for it. We'll see how it turns out.

I go to the shrink on Thursday. I'm hopeful I like this lady.

Jakob's little personality is shining through so much these days. He cracks us all up. Sometimes I find myself struggling to punish him because the weird little things he does are so stinking funny I can't help but laugh.

Allen and I were just hanging out watching TV in the garage and I looked at him and said "Hey, you know what's freaking weird......I was just in a mental hospital for a week.....that's just...well crazy!

Makily has her 48 hour EEG starting next Monday morning til Wednesday morning at Arnold Palmer Children's in Orlando. If they get what they need beforehand we may be able to leave sooner than Wednesday. I don't look forward to the two days in the hospital trying to keep Makily from pulling all those electrodes off her head. I am going to take my laptop and my camera and will VLOG/BLOG this stay. Allen is taking the first half of next week off work to keep Jakob and is just going to work the second half of the week. Having him home the last week and a half has been just AMAZING. I didn't realize how hard it was to do it all by myself until I had Allen her this much and this long.

Today we went to the park with some friends and their kids and flew kites. Jakob ran around and was thrilled. He loved the kites.

Here are some pics from the day.

Jakob, this was one of the only pics I could get of him because he couldn't be still for very long.

Aubrey, Makily and Cameron.

One of my new favorites of me and My Kily.

This was my attempt to get a photo of me and both kids. FAIL.

Aubrey, Makily and Cameron

Me and Makily.

Anxiety's A Bitch.

2012-01-17T09:40:00.006-05:00

*If you have not read the last several entries please look to the right under the heading "Psych Hospital" and read those entries first.*

We went to dinner shortly after my conversation about why I was there with the other patients.

Everyone lined up in front of the door exiting the unit. We had to wait until a staff member gave the okay to go and unlocked the door. Another staff member walked us to the cafeteria. We walked in a line much like you do in elementary school. I could barely eat. I ate a few bites of a salad and immediately wanted to be back in the unit if you can believe that. I was uncomfortable and even more nervous that a REAL CRAZY person would talk to me and that I wouldn't know how to respond.

When we returned to the unit it was about six pm. They finally had my room ready. When I walked in the room I became very uneasy.

Everything was molded plastic and bolted to the floor or the wall or both. There was no mirror in the bedroom, only in the bathroom and it was bolted to the floor. The shower curtain was VELCROED in place. I know this because when I took my first shower there I ripped it off on accident. When I realized it was velcroed I laughed out loud.

When they admitted me the intake lady said the doctor had written orders to add one antidepressant and increase the one I was already on. He did NOT write for ANYTHING FOR ANXIETY. My diagnosis was "Severe Depression and Anxiety", they knew I was taking xanax every day and I actually had a whole anxiety "routine" every night that I won't detail here but I told them everything.

So when I realized I had nothing written and it was past 7 pm at this point, I started to get panicky. I went into my room and paced. Then I laid on the bed....YES with my zebra blanket and sobbed....and sobbed....and then sobbed some more. I remember saying over and over "This isn't happening, I can't believe I am here.." This went on for about 20 minutes before I realized it was only going to get worse as the night wore on and SOMEONE needed to get me SOMETHING for anxiety and NOW.

I walked to the desk and asked a male nurse if I could get something for anxiety....I was GOING to tell him I didn't even think I had anything written but he cut me off and said "They are pouring meds now give it some time." and abruptly walked away.

sigh

I walked back to my room and did the same routine except this time I was hyperventilating also. Full blown panic attack. I didn't want anyone to see me doing this. I went to the bathroom and vomited. Then back in the room where I continued to lay in the bed, sobbing and hyperventilating. A staff member came in to check on me. They did that every 15 minutes around the clock if you were in your room. She asked if I was okay. I said no. She said I was smart to have gone in my room and away from the stimulation of the day room. Then she walked out.

sigh again.

I couldn't calm down. I was trying to but everything was hitting me at once. I can't see my kids again until these people think it's okay.

I can't leave if I want. I have ZERO control in this moment and will continue to have zero control until again...someone else thinks I'm capable of having control. Then I realized I wasn't in control of my own body at that moment and that just made the panic attack worse. I walked to the desk....huffing and trying to hold back the tears. I went to the same nurse and said "I need something for anxiety now!" He barely looked up from his paperwork and said "You need to remove yourself from the stimulation and go to your room for a while...you are just nervous." I told him I had been in my room having a panic attack for the last hour so obviously that didn't work. I also explained I didn't even think I had anything written for anxiety so he was going to have to call someone and get it written. With that he said "I'll get to it when I finish this." He was filling out a piece of paper work.

I. was. infuriated.

At least at home I had a whole routine that would alleviate the MASSIVE anxiety I was having but here I had to wait for the assholes to finish their paperwork.

So I said "That's just fine, FINE....you finish your petty piece of paperwork while I stand here having a panic attack at the desk......because that paperwork is more important in this moment."

I turned around and began walking to my room. Shaking and crying again, I was now more panicked because I had no idea when or even if I would get ANY relief that night. One of the techs had been standing by watching this go on. We will call him "Carlton". He had a very thick African accent and I could barely understand him. He called for me and said "COME BACK, HE WILL GET IT NOW." I walked back and I heard Carlton say "She is crying come on get her meds now." The nurse got up and immediately got an order from the nurse practitioner that happened to be right there (luckily). Then I paced in front of the desk.....like all the other crazies waiting for my medication.

I realized in that moment I had turned into one of "them".

While I may have not been as severe I was THE PERSON I had judged just hours ago for doing the same. This was a telling moment for me as I felt a lot of judgement IMMEDIATELY disappear from my mind. I would no longer judge ANYONE in that place just at first glance OR because they were pacing or "acting crazy". I got it. I get it. I will never forget it either.

The nurse brought me an Ativan. I took it, embarrassed that my hands were shaking holding onto the cup....and it was so obvious.

The ativan kicked in about 20 minutes later and I actually fell asleep. I could physically feel the anxiety letting up as I drifted off.

It's still a bizarre feeling to me.

Don't Worry Be Happy.

2012-01-16T10:51:00.006-05:00

I've had several people express their worries about me. Wanting to make sure I have follow up appts. Do I have help? What do I need?

Well first off YES I have follow up. I was not permitted to leave without an appt with a therapist. I go see her for the first time this Wednesday. I am hoping she is NOT like the lunatic I went to previously. Someone close to me goes to see another doctor in the same office and SWEARS by them so I'm hoping that I have good luck with this lady. If for whatever reason we don't click one of my therapists in the hospital printed out TONS of resources and shrinks so I have options.

I am taking my meds religiously. I have always been pretty good about it but there were times I'd forget or take it late in the day when I usually take it when I first wake up. I was sent home with four meds. Ambien (sleeping pill), T razodone (sleeping pill/anti-anxiety), Abilify and Effexor XR. I have been on the Effexor EIGHT years BUT I was only taking 150mg. The psychiatrist was shocked about that and said I needed to be on AT LEAST 225MG since I had been on it so long and stated it should have been upped that high LONG ago. I was getting it from my general practitioner so I can't really blame her. She's not shrink, it isn't really her field. I have a large morning dose and then a smaller afternoon one. I also have Xanax as needed. I haven't had to take the Traz0done except once since I got home and I have taken the xanax twice. Haven't had Ambien since Friday.

My meds with a few of my over the counters thrown in there. I feel like a geriatric patient. Fo Realz.

Allen took all last week off work (used his vacation time), and is taking this week off also. He got paid for last week but won't for this week. Since Closetmaid changed over to Penske he went from having a month of vacation time a year to just a week. That Blows. We will make it work though just like we always do. He also cleaned the house out of a lot of things we were needing to get rid of, rearranged some stuff and just made things easier for me when I came home. He has been doing most of the care for the kids and I chip in here and there. I tell him if I am getting too stressed about something and he jumps right on it. What I did to get so lucky with him I really don't know but I am grateful.

I have already seen changes in the way I think and when I catch myself being negative I either distract myself with something else OR I repeat the opposite POSITIVE THOUGHT over and over in my head....sometimes out loud. Yes I do talk to myself....more than I did before ;-).

What I need? I need the support I get here from my blog and my facebook. I need to teach as many people how to take care of Makily as possible. Meaning her meds, g tube feeds, how to work her pump and how to give her emergency medication if she has a seizure. No one in our life knows how to do these things SPECIFICALLY for Makily EXCEPT Allen and I and the pressure weighs on me heavily.

I also need to get respite desperately. I do think I can get up to four or six hours a day but it's been a while since I checked. I don't want to do it but I KNOW I NEED TO DO IT. Letting someone else take care of her makes me insane but NOT letting anyone help obviously made me insane too. The definition of insanity is doing the same thing over and over and expecting different results. I'm trying to change how I do things. I'm rather stubborn and hard headed though so this is difficult but I can do it.

Yesterday my back was achy so I got in the hot tub. Jakob saw me in there and insisted on getting in too. Then Allen got Makily up and gave her to me and she had a big time. At one point I was hugging her and SHE put her arm AROUND ME and hugged me back. There are a handful of times in her life she has done this and I just sat there while she hugged me basking in the perfection of her. The joy and love that she is. Jakob got jealous (a new thing when it comes to me, usually it's only with Daddy) and was jumping all over me and so there were moments I was holding/hugging them both at the same time and just crying.

I am so blessed.

"Dont Worry Be Happy" by Darth Vader. LMAO!

What I'm Listening To Right Now.

2012-01-15T18:52:00.003-05:00

My music selection lately has been pretty insane. Some of it I listen to over and over. Some because it makes me feel better, some of it I enjoy listening to just to wallow in the "suck" of it all.

Some of it I relate to pieces and parts and then some of the music is just out and out rage or the entire song speaks to me. Some of it I just enjoy the beautiful soulful voices. Reminds me of my sister when she sings. I LOVE MUSIC. I really always have.

I'll post the videos below and I'm going to try to find all videos with the words. Sorry if the spacing is off. I design the layouts on my own and there is only so much I can do about certain sizing settings.

Favorite part of this one is "Imma' be what I set out to be, undoubtedly and all those who look down on me I'm tearin down your balcony."

"I'm alive again, more alive than I have ever been in my whole entire life, I can see these people's ears perk up as I begin."

Her voice is JUST amazing.

"Do you ever feel so paper thin, just like a house of cards, one blow from caving in."

"I can tell, I can tell how much you hate this.....and deep down inside you know it's killing me."

"I tried so hard and got so far, but in the end it doesn't even matter..."

"I need a little room to breathe cause I'm one step closer to the edge and I'm about to break."

"Mistreated, misplaced, misunderstood, miss "no way it's all good", no it didn't slow me down, mistaken, always second guessing underestimated look i'm still around."

"Staring at the blank page before you, open up the dirty window, let the sun illuminate the words that you could not find, reaching, for something in the distance, so close you can almost taste it release your inhibitions feel the rain on your skin."

"Look into my eyes and I own you...." I <3 Adam Levine so you get the real video on this one so all you ladies can drool along with me. lol

"Theres a count down waiting for me to erupt. Time to blow out." I love Britney and her spiked boots! She's go-just and a card carrying member of the crazy society like me.

That's all for now folks. Please enjoy my varied music choices.

The Nurses Station and Cutting Strings.

2012-01-15T13:40:00.006-05:00

If you have not read the last couple entries:
Read this first
Read this second
Read this last
Things will make more sense that way.

The secretary picked up my bag and we walked out of the room and into "The Unit". It was about 4pm at this point (Allen and I had left the house around noon). The secretary gave all my things to the front desk clerk and said we still needed to "check them in". Thankfully she let me keep my blanket.....that zebra blanket.

She had me sit right across from the nurses station. I didn't know this then but NOW I realize this too was probably a dumb place to sit me.

The patients tend to gather around the nurses station for various reasons. They want someone to watch them shave, they want their meds....early...or double the dose they are prescribed. They need someone to listen to them rant and rave about not wanting to take their antidepressants for fear the FBI will begin tracking them (true story.). They want laundry soap, to use the phone or snacks. Or some of them are having panic attacks and are anxiously awaiting their med while the nurse says "I'll get it when I finish this." "This" being a piece of paper work. True Story.

I listened to all of this ranting and needing with wide eyes and a nervous stare. I watched as an elderly lady in a hospital gown paced all the halls, in numerical order without stopping or slowing down at all. She had graying/blonde hair that was in a long braid down her back. A tech assigned to follow her could hardly keep up.

I got some nerve up after sitting there for a while and asked when I would be able to get into my room. A nice lady said she wasn't sure but that she needed to see me to go through all my stuff. She took me to a small conference room with no door across from the chaos at the nurses station. She meticulously went through all my things. Every now and then stopping and explaining why she had to hold on to this or that item. I couldn't have my hair dryer.....the cord, I had a small lip gloss that looked like the container may be glass....might cut myself. She got to a pair of my pants with a drawstring and asked "Do you want me to just pull these out and save them or can I just cut them out?" "Cut them I guess." I replied. I watched as she went through all my clothes and cut out the drawstring OR the strings attached to your clothes to hang them. She asked me what kind of shoes I had on. I said they are slide ons. She said "Good because we take shoe strings too, then we just replace them with a couple zip ties."

This was true and by the end of the week they had run out of zip ties (you got four total), and so people were walking around with the tongue of their shoes flapping in the wind. If it wasn't so sad it would be funny.

Then she took me to a room and asked me to remove my shorts. I did and then she had me turn around, then shake my panties so she could make sure I wasn't hiding anything. I immediately felt about five years old and humiliated. The woman was great about it but I still just wanted to crawl under the carpet. She had me remove my shirt and shake my bra in the same manner.

She took my blood pressure it was 150/90. She asked if that was normal for me. No I said. She shook her head understandingly and then asked me to go back and wait until they called me for my room.

I sat back down and watched much of the same chaos from before. I was scared to death someone was going to talk to me. One of the crazies you know?

I sat for another half hour or so and went up to the desk to ask again when could I get in my room. The nurse said it would be after dinner, by now it was about 5pm. The nurse asked me in front of all the other patients standing around if I had ever been "in a place like this before." I said no and he said that the first time in a place like that could be scary......and bla bla bla...... While he was talking I locked eyes with a young man there. I said to myself surely that can't be?! Then I was brought back to the awkward conversation with the nurse. He was continuing to explain how scary it could be for me when I finally cut him off and said. "Ya know what is even more awkward about this moment, the fact that we are having this conversation in front of everyone here." Several patients laughed and then I looked over again to be sure of who I thought I had recognized. At that same moment he looked at me and I knew it was him and he gave me a knowing look that said he realized who I was too. It was an OLD friend from school that I had not seen in years. Initially I thought he worked there but he was a patient. I was baffled. He asked why I was there and I just said Makily and he hugged me. He knew without me saying a another word.

He left that day just an hour or so later and I do hope that he is doing well now.

Once he left I decided I would venture into the "day room" where other patients were sitting watching TV. I sat there for a few moments when a man asked me why I had my blanket. I told him I didn't have a room yet. He told me I reminded him of Linus.

Some people laughed....I did too, I actually agreed. At this point I was so attached to the damn blanket though they could have called me anything. I wasn't putting it down....not yet. Then he asked me in front of everyone why I was there. I was taken aback for a moment when I realized I had not yet decided what I was going to say to that question. I thought about it and then said

"I was going to blow my head off."

Total Silence.

Then he asks what I was going to do that with, and I said "why with a gun of course." He told me he had too many felony convictions and wasn't allowed to own a gun. Then asked how I had avoided having any felony convictions.

blink

BLINK.

I said "Well I've just never committed a crime?"

The whole room erupted with laughter.

more later.

How did I get here?

2012-01-14T20:06:00.009-05:00

*note*
If you have not read the following two entries you should go back and read those first before reading this one.
READ THIS FIRST
READ THIS SECOND.

I guess I should explain or at least attempt to explain how my mind slipped into the place I am currently fighting my way out of.

I've been trying to find myself for a couple of years. Every time I say that I just cringe in how hokey it sounds but whatever.....it's true.

Makily started having seizures again last year.

It ROCKED me to my core. I knew at the time it was going to affect me but wow, I just cringe remember the feelings of getting that phone call from the school and hearing the teacher just blurt out "Trish come quick".

It was another slap of reality right there in my face. Nothing I could do to avoid it. Nothing I could say or change. It was what it was and if she was going to die, once again there was just nothing. I had to fight to get the settings adjusted on her apnea monitor while we were adjusting the meds. I was afraid she'd seize in the night and die. Emanuel Syndrome kids have been known to do so and it's always in the back of my mind. The meds lowered her heart rate and so the monitor went off constantly. The cardiologist did not want to sign off on lowering the setting but said it was fine to do so as long as Makily's heart rate was above 40. Why wouldn't she just write for it? I begged, I yelled and cried at this woman and she just didn't get it. And what could I do about it?

Nothing.

More Nothing.

I pushed that into the back of my mind while we dealt with adjusting her medication and as we watched her become sleepier and sleepier. Then she had another abnormal EEG. Lots of abnormal brain spikes. Her eyes do this weird thing when she is tired. She has no stamina. I look at her sometimes and have to fight sobbing because the reality of this gets more apparent the older she gets. I love this innocent, angelic being in a way that I think is unique and so intense sometimes it hurts. Okay it hurts most of the time. But I DON'T want the alternative. I don't ever want it and I pray for it at the same time. What will become of her when Allen and I are gone? I can't expect Jakob to spend his life caring for her. I can't fathom the thought of her in a home right now....or ever really. So I sit. I wonder what can I do about all this.......and the answer is always.....

Nothing.

And who's fault is all that emotional tornado? Who caused this? Who is the person to blame for my daughter's life being likely cut short and DEFINITELY made more difficult and painful than ANY child should ever know?

Me.

I have blamed and beat myself up for the past nearly eight years because of the fact I genetically passed this condition to Makily.

Logically and rationally I KNOW this is not the case and had I known I'm not sure what we would have done differently. The fact is though that I am fucking ANGRY as hell about what Makily won't have and the only place I've been able to project that anger was on myself. I didn't even realize I was doing it until the therapist caught me doing it and then told me to make it a point to catch myself when I had more negative thoughts about myself. I was baffled at how much and how often I do it.

That stems from a lot of different things I guess but I know the event I blogged about recently HERE is a contributing factor.

Then when Makily's button came out in the night a few weeks ago.....well that was the final straw. She was surely going to need it dilated as it had been out for a while since we had all been asleep. I just lost it. I looked at Allen and said I don't know what to do and then walked out to sob on my bed like a lunatic. I immediately envisioned the look of sheer pain and terror on her face when they dilated it the last time and I was so anxious I could barely stand myself. I did NOT want to have to do that to her again. And what could I do about it?

Nothing.

I am learning to let go of things I can't control. I know I will let go of those things and pick them back up over and over. It's who I am. I am working on this.

I am learning to not care what everyone else wants me to be or thinks I should be OR THAT I PERCEIVE they want me to be....and instead I'm just going to be me. This is very freeing and I refuse to ever go back to being that way again.

I am an awesome wife and mother. I'm a great daughter, sister and friend. I have my faults (see I'm doing it again, complimenting myself and then having to acknowledgement faults....why do I do this?). I am trying to learn to recognize that even though both my kids have special needs does NOT make me a failure as a mother. My life is just different than most and that's okay. If we all were alike this life would be incredibly boring.

I've struggled with my faith and in what I believe in. This has also brought me to my knees. I can't stand it.

Jakob is a really hyper kid and sometimes I'm just tired. We let him run in and out of the backyard and that seems to have helped along with his new trampoline.

The visions I was having began as flashes of all the horrible things I've had to sit by and watch Makily go through. I would see her laying near death on a vent, blue because she's not breathing due to a seizure, exhausted because her body is just not made to make her soar like she should.

I would be sad the rest of the day and want to just swallow the bottle of xanax. I wouldn't do it though, I couldn't stand the though of leaving my babies and Allen. It wouldn't be fair to them.

Then the flashes turned to suicidal ideations. It scared me. I realized I had never truly dealt with Makily's issues. I just kept trying to bury them and take them out on myself. In doing so I was constantly looking for ways to escape the pain of it all. I've done things I'm not thrilled about but you know what? That's okay. We all make mistakes I'm human just like everyone else and I won't hold myself to higher standards than I would anyone else.

Why do I do that?

Me and my Zebra Blanket.

2012-01-14T12:28:00.003-05:00

If you missed my last entry this one won't make sense, go back and read that one HERE

Once I got inside the Nut House I was taken to a room with a lady who was pretty nice. She went through every aspect of my life. I told her EVERYTHING. Some things only Allen knows. It was hard to detail my life to a stranger but I knew I had to spill it, get it out of me. I also knew if they didn't know EVERYTHING they couldn't help me.

Once we were finished I was crying again and she explained that I WOULD be admitted she just had to call the doctor to get orders. She allowed my sister and Allen to come back in and sit with me while she did so.

When the lady came back she dropped a bomb.

They had NO beds.

*blink*

*blink*

I said "The whole reason I agreed to be Baker Acted was because YOU SAID that was the only bed you had..and it was the only way to avoid going to the other place.. now you say there are no beds..what do I do now...this is ridiculous!!!!!!!!!!!!!!"

She said she had been told that by another person working the floor. She said there were two people being discharged BUT it would be a while before I got into a room.

I said some other choice words. I felt trapped and was even more anxious now than I was originally.

Allen and my sister were politely told they should leave now and the woman told me if I wanted I could lay on the floor and sleep while I waited.

I told her she was killing me. Sure I guess I'll lay in the floor.

So I did. I wrapped myself up in my zebra blanket that they THANKFULLY let me bring in AND keep. I laid on the floor, turned off the light, closed the door and sobbed into my blanket as the realization of where I was and how low I had gotten sunk in. I kept saying "I can't believe this is happening." over and over.

It was surreal.

A few minutes later the secretary opened the door and said I had to have either the lights ON or the door OPEN. She had to be able to "watch" me. I told her to just leave the light off and open the door (after arguing with her). I had not slept well in days and so I desperately tried to fall asleep. This was amidst stifled sobs into my blanket....I was trying to cry quietly now since the door was open.

sigh

A bit later I begin hearing a young male's voicing YELLING and screaming. His voice was getting closer and closer and I was becoming more and more anxious. He was screaming about the fact they were discharging him and saying every cuss word in the book and some I have never heard before. He eventually ended up walking past my door into the room RIGHT next to mine with a nurse following quickly behind him. I had sat up and curled up in a ball in the corner and put my fingers in my ears. I was SCARED TO DEATH the guy was going to come into the room I was in. I was cursing myself for picking THE DOOR OPEN instead of the light on.

When he got into the room next door he began throwing chairs against the wall and screaming. I am terrified I don't know how psychotic this guy is...I mean I WAS in a nut house and I was so afraid he would going to beat the crap out of the nurse, the secretary and eventually me. The nurse ran to the secretary's desk, told her to call some male orderlies and went back to the room to try to calm the guy down.

It wasn't working.

The secretary then came to my door, flipped the light on and was trying to close my door (she had it propped open so she struggled with it). I looked at her and said "Is this supposed to be helping me....because believe me...it aint helping...." She apologized and walked back out. Just then I saw two male orderlies walk by my door and just like that the guy clammed up. I didn't hear another peep out of him. He was fine yelling and screaming and throwing things when it was just a therapist, secretary, female nurse and crazy girl hiding in a corner in her zebra blanket. When there were men there, he had nothing to say.

I was relieved.

A few minutes later the secretary came back and got my stuff and said we were going to the floor now. She didn't want me sitting where I was and witnessing what was happening. I thanked her.

Little did I know that this was JUST the tip of the iceberg of strange and scary things to come.

More tomorrow.

I Flew Over The Cuckoo's Nest.

2012-01-13T11:50:00.006-05:00

Many of my Facebook friends had been wondering where I went. I had several comments and messages today when I got home.

I debated on if I should share this part of my life with everyone. I went back and forth about it. One thing I learned in the last week though was that I have to AND WILL stop worrying about what everyone else thinks. Ultimately the ONLY person I should be worried about is Allen and what HE thinks.

Everyone else can pound sand if they don't like me or something I do or have done...or will do.

Also I know that someone may happen upon this entry that is feeling how I was feeling and hopefully it will encourage them to get help.

Sunday my anxiety got to a point that I couldn't stop seeing visions of slitting my wrists and blowing my head off. The latter was so vivid that I would see myself put the gun to my head, pull the trigger and watch as my head jerked backwards from the bullet.

I woke up that morning with anxiety so bad that my chest PHYSICALLY hurt. It's been that way for a while but typically something needed to trigger it. Sunday morning I literally opened my eyes from sleeping and my chest was so heavy I immediately wanted to cry. The visions were worse and wouldn't go away.

At this point I told Allen I needed help.

He called The Vines and they said they only had ONE bed open and it was a Baker Act bed.

sigh.

The only other place in our area is known to be horrible and I refused to go there.

At this point I started screaming and crying that I wasn't going AT ALL. I didn't understand why it had to be so difficult and embarrassing. Why did we have to involve the police? I was so ashamed.

Eventually I agreed we would go to The Vines and Allen would go to the desk and just tell them his wife was in the car and was suicidal.

This was honestly one of the saddest and lowest moments of my life.

The secretary told Allen we would have to call the police and have me Baker Acted to get me in the door.

I personally think this is ridiculous but we had no other options so Allen called the police.

My sister Elizabeth sat with me while Allen made the call. I was on the verge of a panic attack the entire time. I was just beside myself.

The cop came and luckily he was really nice and made it as painless as he possibly could for me.

I was admitted about an hour later.

I was there for six days. I could have left on Tuesday as my 72 hour hold was up but decided to stay until the doctors though I was ready to go home.

I have story upon stories to share about my experience but those will be separate blog entries. Some of them are incredibly heart wrenching while others will leave you laughing hysterically.

For now I will say that I feel better than I have mentally IN YEARS. I had two wonderful therapists that were amazing with me. My Effexor dosage was increased and they added Abilify which seems to have worked wonders.

To those who called and Allen avoided you please understand that we had not discussed if we were going to tell anyone what was going on. In fact I was so embarrassed on Sunday he knew not to say a word. He was at a loss at what to say.

Pot Luck.

2012-01-06T17:10:00.004-05:00

Okay I'm just going to ramble on in no orderly fashion to update what is going on RIGHT now with our family.

Makily is going for a 48 hour EEG in Orlando at Arnold Palmer's on Jan. 23rd. I think Allen is going to try to take off work so we have someone to take care of Jakob while the other of us is in with Makily. Allen offered to be the one in the hospital with her but I just don't think I can do it. I've been to EVERYTHING she's ever had and so I can't NOT go. Since the seizures started back up and the new med was added she's sleepier than usual (and the school has even went so far as to say they see a regression) and I want the meds adjusted or changed to help with that. Her EEG's have been abnormal for over a year now. She has no stamina. Her strength is the worst it's been in a while. She was sick for 11 days straight and she looked so crappy I could barely look at her without crying.

Jakob is doing well but still very behind speech wise. He's trying his best though and so we are very proud of him. Recently he has actually sat and snuggled with me or Daddy for 15 minutes at a time. THIS IS HUGE because that was something just six months ago he COULD NOT and WOULD not have been about to do. He's still a handful and a half though and keeps us all on our toes.

Allen is awesome as always. He makes me laugh and knows how to cheer me up. He's been really supportive the last month or so that I have been struggling. I'm honestly not sure how I got so lucky with him. He bought Makily flowers last night. Made me BAWL. She loved them. I couldn't be more grateful.

I'm doing alright.

Lie.

I'm a wreck. Facing another hospitalization with her just puts me back in that "anything can happen to her at any moment" mode. It stinks. Today she had what Allen believes was a seizure. Her right eye turned COMPLETELY OUT while her left stayed "normal", she was very still and Allen said he just sat there holding her hand telling her it's okay. It lasted maybe 30 seconds. Then she acted totally normal so I don't know what to think. I just hate dealing with ANYTHING to do with her brain. It scares the hell out of me. I still hate being responsible for giving her a medication that effects her BRAIN FUNCTION. Makes me so nervous and always has. There have been a couple of times I've drawn all her meds up and then started to question if I drew up the seizure med or her robinul twice (those two are clear and she gets the same amount of each). When that happens I just dump them both and start over. It's a lot of pressure that I don't usually let myself focus on. I'm sad she is getting bigger, older and heavier. It's getting so hard to lift her in certain situations. I hate it so much, it makes me want to cry.

I was on our local radio station recently. I am helping to coordinate the Chromosome 22 Central Conference. Robin and Larry let me come on and talk about Makily, ES and other Chromosome 22 disorders. It was really an awesome experience. I was pretty nervous as I had never done that before and was afraid I would get emotional and not be able to get myself back together. I did much better than I thought I would. I had a rough morning before I had to go on so I mentally was struggling but went anyway and was proud that I did. They had it up live on their podcast so there is video of it!

I am going to get over to the hotel we are looking at this week to try and get a contract written and final details for that. Believe me I will update the closer we get and once we have more things set in stone.

I'm still looking for a new shrink. I called some this week and got lots of voice mails. One did want to help me but she said the doctor I was calling about wouldn't be that good of a match for me but that someone else in the office would. She would have to see if that doctor was covered by my insurance. That was two days ago and I haven't heard back. sigh.

I bought the dog a dress this week and she still has it on. I was shocked she liked it and didn't try to rip it off.

Yesterday I went to check my blog and was shocked to find blogger had deleted it. Or so I thought. It said something like this blog no longer exists. I have been blogging here since 2005 and so I was in a total panic to figure out what happened. The thought of not being able to retrieve it was horrible. After trying to sign into my gmail which is how I sign into my blogger it told me that there had be fraudulent/suspicious activity on my account. It made me change my password and THANKFULLY my blog was BACK. So lesson learned here is that I MUST keep blogging regularly. I think this will be a wonderful keepsake for my kids. They will get to know me in a way they never would in having this. I plan on printing out all my entries and making a book for them one day. I went through some old things on my blog the other day THAT I didn't even remember, so I'm glad I have it all here.

I'm back....or at least I'm working my way back.

The worst shrink ever.

2012-01-04T17:23:00.004-05:00

Okay so maybe not EVER but she's pretty awful.

I will not put her name here. I'm feeling generous....or maybe it's just pity for this woman who seems to be so horrible at her job and have no idea.

I had to psych (pun intended) myself up to even go to the shrink. I had gone once when Makily was just six months old. That therapist didn't help at all. When I told her about Makily her response was that I should be happy I could have more kids....which TECHNICALLY I probably could have but THERE WAS NO WAY I was risking pregnancy again. When I explained that to her she just looked dumbfounded.

sigh.

So after that experience I didn't really see the point in going again. I have had a lot of struggles as of late. I'm not coping like I once used to be able to so after lots of encouragement I looked up the shrinks on my insurance plans, picked a female and made the appointment.

On my way there I was nervous. I didn't really WANT to go but I am to the point I realize I do need professional help, so I went in the hopes that I would get something out of it.

I walked in the door and was greeted by the smell of cigarette smoke. I was annoyed but tried to convince myself that it may have just been the candle they had burning.

There was a family of five there. Mom, Dad and three Tween/Teen age boys. One of the boys was pacing, drinking a PEPSI and looking nervous. The shrink walked out from the back with one of the other boys and a letter . I heard her explaining to the mother that she had a "form letter" she had tweaked for the boy and he needed to go home and write it in his own handwriting. Apparently two of the boys had done something and the one was court ordered to write a letter of apology to the "victim".

How do I know that?

It was all said in front of me in the lobby. I kept thinking "wow they are breaking every HIPPA law in the book", but no one else seemed shocked so I just pretended to read my magazine. The "pacing boy" then went to the bathroom again to attempt to give a urine sample for a drug test HE was court ordered to take. That along with anger management and drug and alcohol abuse counseling. After three attempts to "go" he came out with a sample. Then the boy sat down next to his father and the shrink handed him a Certificate of Completion for Drug and Alcohol Counseling.

A few minutes later the boy walked to the back....then came back looking nervous and said "It's positive.....can I take another test, I don't know why it's positive." My first thought was " Yeah you know why it's positive you just smoked a fatty with your buddies last night...." lol.

Then I'm thinking it's about to get crazy up in this place because mom and dad and shrink are going to GO OFF. I'm actually excited about the fact that I am being entertained by all this and can't wait to watch the fireworks go off.

There were no fireworks to be had though.

In response to his son telling him he just pissed hot on a drug test, the father simply looked up from his book and asked the shrink what they should do.

Mom didn't react at all.

The shrink then says "Well it's his first test with me so don't worry about it." I'm thinking WAIT A MINUTE didn't she JUST give him a certificate of completion about drug and alcohol counseling.....and HE JUST PISSED HOT? Then the boy says "Well so and so wants me to take a test next week." The shrink then replied that the boy should tell THAT person that SHE would be testing him the following week, no need for her to do it, this would give him more time.

If he had court ordered drug testing and alcohol and drug counseling why on earth did they not test him HIS FIRST day there and then again his last day when he completed the counseling?

What do I know though?

They finally finish and I was called back for my appointment 30 minutes late because the shrink was dealing with that family.

I get into her office and it looked professional enough I guess....except one thing. The back door to her office was WIDE OPEN with one of those hanging screen thingies. You know MAGIC MESH.

I wasn't exactly impressed with the Magic Mesh door as any Tom, Dick or Harry could walk by and listen in. I wasn't very professional obviously.

I sat down and the first words out of her mouth were "Do you smoke". I said no and then she asked me how old I was. She complimented me by saying I look younger than my age. At this point I am realizing that she asked me if I smoked because SHE DOES and often, in her office which is why she has that stupid screen and why the place REEKED. Furthermore I believe had I said that I DO SMOKE she would have allowed ME to and she would have also. Nice.

Then she said "So what's up with you?"

I told her I wanted to learn new ways of coping with certain difficult parts of my life.

I told her briefly about Makily and her syndrome, then I told her about Jakob and as soon as I told her we fostered to adopt him THINGS WENT SOUTH!

She asked me about his biological parents and I told her their names to which she said SHE KNEW Jakob's bio mom. I told her I didn't think that was possible as they don't live here and she insisted it was his mom. After disputing this a few times I gave up and just let her convince herself that she was right. Then she went on and on about these people that ARE NOT Jakob's bios. I just sat nodding and smiling.

She told me she was adopted as an infant. That she was not told about it until she was seven and she felt incredibly betrayed. Then she asked me if we got money for Jakob. I was confused and said what do you mean. She said well since you adopted him don't you get money. I am adopting my grand daughter. Her father is a dirty Mexican and he is in jail and my daughter used cocaine a couple of times when she was pregnant.

*blink*

I told her that Jakob gets a monthly stipend because we adopted him through foster care and he is considered a special needs child. That I didn't think with family adoptions you got anything like that. She said "Well that sucks, darnit I thought I was gonna get some money for it."

*BLINK*

I start to wonder if I am being punked at this point.

Then she asks me how many children Jakob's bio mom had, when I told her SHE SAID:

"Don't you ever wonder why they don't JUST have abortions?"

*blink*

I said "No I just wonder why they don't get their tubes tied?"

I could not make this stuff up people.

She said that her parents would not tell her the names of her bio parents. She broke into the attic and into a safe and found the adoption papers but it only had her father's name on them.

She told me that when she was 15 she told her mother she was going to her friends house for the weekend. Instead she stole her mother's car and drove many states away where her adoption took place. She was pulled over for speeding at one point and when asked for her license she pretended to have left it at home. She gave her brother's birthday when asked and when the cop looked it up he told her that there was a glitch in the DMV'S system and to check on that when she got home and then sent her on her way.

She got to the agency that was helping her and they directed her to the hospital where the records from her birth would be. She broke into the medical records department and began going through the files trying to find hers when a police officer grabbed her by the back of her shirt. She ran, the police chasing her from the hospital and got away. It was very cold and snowing and she even had snow IN her shoes.

This story went on, and on, and on, and on and on.

During most of this conversation I was actually watching the clock and wondering how I could get out of there faster! She spent the majority of the session telling me all about her and her problems. It was very bizarre.

There was more dysfunction throughout this visit but this was the majority of it.

I am currently searching for a shrink.

sigh.

Me after the appt.

Goodbye 2011.

2012-01-03T19:30:00.012-05:00

So it's 2012.

woo hoo.

I had this longer blog written and I just said screw it I'm just gonna candidly speak.

Bear with me.

Last year blew.

Makily started having seizures again, my grandmother went into a nursing home, I had some personal family issues and I had/HAVE some personal and emotional mental issues.

I've done a lot of soul searching this year. That sounds so cheesy but it really is the truth. I think I'm still more confused than certain of anything.

My faith is almost non existent these days. I can't even pray anymore. When I try I just feel like a fool. Imagine how mind boggling this is for a southern girl who was born and raised in a Baptist and then Pentecostal (yes I know polar opposites, I told you my family is odd) church and baptized at the age of five at her request. Yeah. Talk about opening boxes you had once taped up tightly and stored in the back of your head refusing to ever open......NOT. GOOD.

So with all this soul searching you would think I would have some kind of enlightenment. Some sort of "A HA!" moment that I could blog about and sound like I have it all together...right?

Unfortunately there has still been no enlightenment.

I FAR from have it all together.....TRUST ME.

In fact I am pretty sure at THIS moment in time I know less NOW than I ever have and that my friends is the truth.

"The only thing I am sure of.......is that I'm not sure of ANYTHING."

I should tattoo that on the back of my hand. Seriously no other words could more accurately describe the sense of confusion in my head.

I'm trying to find a good shrink to help straighten me out. I saw one right before Christmas and I left there thinking I WAS ACTUALLY normal and SHE was crazy. That is definitely a blog entry of it's own though.

I'm hoping this year will bring me some clarity and peace. I am so full of anxiety I wish I could get away from myself sometimes. I actually had three full out panic attacks this year. I've had them before but not like this. I felt each coming on and typically I can control it and think of something else, do something else and have always avoided it turning into a big deal.

I have lost the ability to control it anymore.

The first one was the day Makily's teacher called and literally JUST said "Trish, COME QUICK!!" and nothing else. My friend Trish witnessed THAT panic attack and let's just say it was UGLY. I screamed and cried and was a total lunatic. I was hyperventilating and saying over and over "WHAT IF SHE IS DYING.....WHAT IF SHE IS NOT BREATHING...IT MUST BE A SEIZURE SHE'S GOING TO DIE OMG SHE'S GONNA DIE I'M NOT READY...." all the way there....... The school called during the HORRIFIC car ride there to say Makily was at least breathing.........I made Trish say over and over to me "She is breathing, she is breathing, she is breathing....." Bless her heart she repeated it like a mantra and I will never forget that. It was the only thing that kept me IN the car at the stop lights or when we were delayed by a train (yes seriously...my luck) and then a STUPID cop who was pulling someone over.....I really almost got out that time. Thankfully Trish talked me down. Thank you for that....as I type this please know my chin is quivering and I have tears streaming down my face. I love you girl.

The second panic attack was later in the year and I felt it coming. My entire head and neck got REALLY hot, I could feel myself breathing faster and right as I was on the edge of full panic attack and sanity I remember thinking in my head that I didnt have the strength anymore to fight it off and it just overtook my whole body. I sat hyperventilating, crying, my head in my hands, shaking and feeling nauseous......feeling pieces of my sanity slowly leave me. It was bizarre and scary and I finally just collapsed into a heap on the bed and I could actually feel when the attack was slowly subsiding and when I was actually starting to be able to control myself again. I won't describe what brought this on, it's too personal and sometimes I share too much here anyway.

I have heard people claim they have panic attacks too. When I asked them what it felt like they said they just felt fidgety.

SERIOUSLY?

Maybe I'm crazy....(lol) but when I feel fidgety that's what I call it.......fidgety. I don't dramatize it for attention by calling it A PANIC ATTACK. Grow up. Realize that dramatizing your fidgetiness (yes I just made that word up) by calling it a panic attack IS VERY ANNOYING to those that actually suffer from them. You suck.... a lot.

END RANT ABOUT THAT.

So my goal for 2012 is to get myself to a place mentally where I am not on the verge of a panic attack all the time. I want to get my house back in order, get my mind as "clear" as it can possibly be. It's been a while since I felt mental clarity. I bet it feels nice. I want that. I don't even totally remember what it feels like.

I have all these people tell me how strong I am, what a great person I am, I'm inspiring...yada yada yada. The fact of the matter is I don't feel any of those things about myself. These people don't witness the "say she's breathing" moments. They don't see me on my kids bedroom floor sobbing after she's fallen asleep. They don't know EVERYTHING about me. Only what I reveal here. I realize I am imperfect. Sometimes I feel like I am MORE imperfect than everyone else.

They don't know some of the EPIC mistakes I have made. I've made some decisions others wouldn't have but honestly I wouldn't go back and change it now. I have experienced things I wouldn't have otherwise and I cherish those experiences and lessons I learned. I am grateful for those that came into my life this year whether it be for just a season or for the rest of my life.

I've learned a lot about myself...but I still feel like I don't know anything.

Painful or not it was worth it.

One more thing this year has taught me is to LOVE UNCONDITIONALLY AND WITHOUT RESERVATIONS. The rewards of this are great.

I feel icky.

2011-09-26T12:16:00.005-05:00

I started this entry trying to be humorous yet profound. I retyped it, deleted it and then said screw it....I'll just be me. raw. uncensored. I couldnt even come up with a good title which usually annoys me but this time I just AGAIN just said screw it and used the first phrase that came to mind.

I feel icky.

ICKY.

I know profound and intelligent isn't it?

I feel like I am juggling 897 balls all the time.

When someone throws in ball number 898............I get icky.

I have been "getting icky" for seven years, since Makily was born. The intensity of said "ick" has gotten worse over the years because my "traumatic memories" have multiplied so much because of all we have been through with Makily.

I don't know how to stop doing this or if there is anything I can do to make myself stop.

This will be an ugly dump of a post.....yes again...I know. I want it out of me, although I feel like once it's out the "feel better" will only last so long. I'm not sure if I will be able to post this publicly. We will see when I get to the end of this "dump". (that makes me think of poo)

I remembered something depressing the other day when I was upset about something else. I find myself doing that often and again, I don't know how to stop. I know it's not healthy,

I am going to share a memory or a couple of them that flood into my brain when that 898th ball is thrown at me and I drop all the other balls I had already been struggling to juggle.

I was 11 years old. I started the 6th grade. Middle School for ME was a nightmare and I imagine for the majority of kids (especially being a girl going through puberty)it is. I had gone to the same elementary school all of my life and had a lot of friends. The Middle School I went to had two classes they picked to segregate from the rest of the 6th grade. They would only have TWO teachers (as opposed to 7), and they would only change classes twice and the two classes would only do things with each other.

Lucky me I ended up in one of the two classes (saracasm).

With none of my friends, I didnt know anyone.

I remember feeling that feeling of loss because I no longer saw any of my friends that I had been in school with for YEARS. I was for whatever reason embarrassed by this. I think maybe because I didnt want my parents to know I didnt have any friends at school?

I dont know.

My grades were atrocious. I was always in trouble for it at home. I would DREAD report cards or progress reports. I don't know if I would say I had become lazy. I had always struggled somewhat with school but had caught up and done fairly well in fourth and fifth grade having b's and c's.

I had tons of D's and F's in the 6th grade.

So I look back now at how I was during that year and I can now say I WAS VERY depressed.

It was the other day when I was dealing with ball number 898 that I realized THIS memory IS the reason why I believe I was so depressed and sad that year.

I had tried out for the Pom Pom Squad and made it. It was a Middle School Dance team and I was ELATED. I had always loved to dance.

A week or so later during practice Ms. Thomas (the gym teacher and also the pom pom coach yes that is her real name and I feel ZERO guilt about using her real name.) said she would be passing out uniforms. All 12 of us girls ages 11-14 were told to strip down to our bras and panties and stand in the locker room. We all did and I remember being mortified. It was the first time in my life I had to be that naked in front of that many people but she told us to do it so I did.

Ms. Thomas walked around giving a skirt to each of us telling us to try them on to see if she was going to need to have anything altered. When she got to me she said she didnt think she was going to have anything to fit me (in front of everyone) and then threw a skirt at me to try on. I put it on and couldn't zip it. There was one other unfortunate girl that also got the same treatment as I did and I CRINGED for her as many of the other girls giggled. Ms. Thomas then came back to me, told me to turn around and "suck all that in". More giggles while I tried to suck in as much as I could so the skirt would zip and the humiliation would end. I was fighting tears the whole time.

It was incredibly tight but she zipped it. When she saw how ridiculous I looked with the now roll I had hanging over said skirt she said "You need to lose that or at least suck it in".

I was sucking in it is what was sad.

So there I stood 11 years old, half naked in front of my peers (most of which I did not know), looking ridiculous in a skirt too small, being made fun of by an adult and hearing the giggles from those that were not as unfortunate as I was in that moment.

From that day on the two captains of the team were mean to me and ridiculed me all the time.

They called me fat.

I felt worthless and ashamed.

I felt fat and ugly.

I felt like I would never be as beautiful as the other girls.

I felt like I would never be "good enough".

Today at age 34 and 23 years later....I stll struggle with a lot of those feelings. I still struggle with my self esteem and the feeling that no matter what I do or how hard I try I will never be good enough.

I don't know what to do with that.

publishing this post with anxiety in my throat. I don't understand how I can be so brutal and blunt about my feelings and thoughts about when Makily was born but THIS memory from so many years ago makes me sick to my stomach to publish. I'm embarrassed and ashamed by it but maybe someone else will happen upon this and it will make them not feel so alone.

So What's New?

2011-09-12T21:21:00.005-05:00

Let's see.

1. I got my nose pierced. I love it and wish I would have done it sooner. I like the nose screws

rather than the pins.

The pins fall out way too easily I think. I accidentally yanked it out though and developed a bump on the inside AND outside of my peircing. I got rid of the outside one doing sea salt soaks and I'm working on the inside one still. Kinda sucks because at the right angle it looks like a booger, although it's just my bump.

2. Jakob was seen by the Neurobehavioral doctor. He says because Jakob is so developmentally delayed (shoot me in the face) that is why we are seeing the behaviors we are. Jakob is three and a half but is according to the doctor functioning at the level of a two year old (#failureasamother). This is all classic textbook terrible two behavior. He wants to wait a year and revisit the issue. He feels that Jakob's speech will catch up in the meantime which will also lessen the tantrums and aggressive behavior. If in fact the aggressive behaviors have not gotten better in a year or so (#iwillbeinsane) we will start discussing medication. School will be VERY difficult for Jakob if he is still having the same impulse control problems and hyperactivity he has now. Some days I know we BOTH must feel like all I say is "Jakob, no, Jakob stop......Jakob find a corner!" He also ordered an MRI of his brain to see if his brain is structurally damaged at all from the prenatal drug and alcohol exposure.....oh joy. The MRI was on Friday and it was at Shands (#myfavoriteplaceSARCASM). Technically we could have had it done elsewhere (because if you have read my blog you KNOW how much I really love Shands) but that would have entailed another at least three month wait to see another shrink....then wait for them to set up the....yada yada yada yada. I figured I would buck up and deal since Jakob is "healthy and normal" and if I thought for a second any of the people there were 1. Morons with no experience or 2. Going to kill my kid I would abruptly say thanks but no thanks and bail. I've done it before (nervousbreakdown#4). We had a hell of a time getting up there because Jakob has learned to unclick his chest strap(not the crotch strap) and pull his arms out of the straps of his carseat while Mommy is driving on I-75. *sigh* Well what Mommy DIDN'T know is that he leaned over and unclicked the belt FROM THE SEAT....YOU KNOW WHAT ATTACHES IT....TO THE CAR! I say "Jakob....HOW MANY TIMES DOES MOMMY HAVE TO TELL YOU TO LEAVE THAT CHEST STRAP ALONE.......!!" I start looking for a place to pull over and fix the thing when I realize I'm coming up around the entrance to the hospital and I slowed down when all the sudden I hear THUD...I think someone hit us. I look behind me and no one is there.....not even Jakob. His carseat is laying face down on the floor board...with him in it. I NEARLY have a heart attack, I'm crying and SITTING IN THE MIDDLE OF ARCHER ROAD with traffic behind me TOTALLY STOPPED. Inside I'm panicking but I held it together enough to turn on the hazards, jump out, flip the carseat over, get Jakob out (whom in the meantime is saying "MOMMY, MOMMY I UP....I UP...I UP MOMMY"!) I quickly strap him into Makily's carseat that IS still strapped in (thankfully he couldnt reach hers), and then pull into the parking garage. Mind you my heart is pounding out of my chest because I am convinced if Jakob DIDN'T already have brain damage he now does from flying out of the seat. We get out of the car and he jumps out acts fine, and says "Mommy I go!" (#kidsgoingtobethedeathofme) We get inside, the techs, doctors and nurses were ALL so kind and wonderful with him. I felt comfortable and wasn't really concerned about his safety like I imagined I would be. Once he went back I forced myself to walk around Shands. I was surprised that I didnt totally lose my cool as soon as I walked in the door. A couple of spots did spark memories..mostly bittersweet ones...some bad.....I took pictures and if I can get them up on this entry I will. We don't have results yet and I haven't called to try and get them yet either. I want to know and don't want to know at the same time.

3. Makily has the same nasty stomach bug the rest of us have all had. I got it have been down for four days (as down as I can get with two pooping kids and a hubby on the road for work). Makily started acting sickly last weekend but not really showing any symptoms...I could see it in her eyes. That sounds funny but I can see it...just trust me (#iknowimalittlenuts). She's full out water shooting out her butt (TMI..but i'm not sorry cause if you read my blog you should know by now). I'm coating it with butt paste and she's on just pedialyte right now. I'm hoping this is short lived on her. Tummy bugs have always been horrible on her for all the obvious reasons (she can't vomit) and well her belly is already a mess as a normal for her so....yeah it sucks. No seizures since the two in Feb and I'm hoping to keep it that way. She had a recent EEG that was AGAIN abnormal so I just hold my breath that the weird spikes will not lead to a seizure. She's on two meds now and under control so I'll take that.

4. I'm really tired. Mentally, physically, emotionally and every other way there is to be tired..I am.

More Tomorrow maybe....and maybe it will be something funny instead of well...this.

11 Years Ago Today.

2011-09-10T10:07:00.007-05:00

I married my Allen.

I was 23 years old and thought he hung the moon........

.......and I still do.

Our first date was a double date with the friends that had set us up. Allen was shy and almost awkward and I was the loud mouth, out going slightly less mature than I am now 21 year old girl.

I left that date saying "He's nice but really shy, that won't ever work."

Then Monday morning at work I got a HUGE arrangement of flowers from him with his cell phone number on it.

He was the first man I had ever dated in my adult life that sent me flowers.

From that day on I was hooked, his shyness disappeared and the real Allen SLOWLY....EVER SO SLOWLY emerged. I fell in love with the selflessness I saw in him. The cute way he would get embarrased when I would tell him how I felt about him. The way he treated his mom and the eventual way he let me "in" when I KNEW that was not something he did with just anyone.

Although the first six months we dated was a little rocky (and I know now it was because he had so many walls built up that unless you were persistent you would never tear them down), I knew deep down I was going to marry him one day.

Our marriage from the beginning was great. We really didn't have REAL problems at first. Financially we were stable, both us of worked, we loved each other and were dedicated to building a life and family together. I wanted really for nothing except a house and two kids eventually. I couldnt wait to be pregnant and have Allen's babies. My picture perfect, cookie cutter DREAM LIFE was well on it's way to PERFECTION.

Two years later we started trying to have a baby.

This was the first REAL test of our marriage. Six months of trying and not succeeding had me totally insane. I didn't understand what was taking so long. I was convinced something was wrong with me. Allen acted aloof about it. Didn't act like he was bothered by it at all. This made me insane. I wanted him to be as upset as I was and while he probably was he didn't show it and it made me angry. This was a difficult 15 months for us and I remember when I became pregnant that I remember thinking WOW that was so hard. I was proud we had gone through something so difficult and survived it. We were stronger because of it. I had grown as a person.

Then Makily was born.

I fell apart. Allen, who probably was hurting as much OR MORE than I was, WAS A ROCK. He held me for hours while I sobbed the night she was diagnosed. He just laid there quietly holding me, occasionally telling me it would be okay. Although I'm sure even he doubted it then. He cried when they told us the diagnosis and prognosis. That was THE LAST TIME I saw Allen cry. The next day, as if he had mourned it literally over night...he looked at me and with honesty said "She is my daughter, I will love her no matter what, I don't care if she is retarded or if they think she is going to die, she's mine." I sobbed more. I wasn't there yet. Didn't think I could ever get there.

He drug me along the journey with him. Mornings when she was still in the NICU he would get up, get dressed and nag me to get up so we could go see Makily. I could barely lift my head off the pillow. I would have been content to just lay in that bed and stare at the wall all day, recounting how horrible my life was and how it would always be that way now. (Post partum depression anyone?) Allen would get dressed and say, I'm leaving in five minutes and I'm going with or without you. The guilt of that statement would force me out of the bed. I would go, hating myself and everything all the way. I was angry at him for being "okay". Much like when I was trying to get pregnant and he was so calm about it, I wanted him to feel the pain I felt, to show he was hurting, to show he cared like I did.

Well, the truth is Allen isn't me and doesnt show how he feels like I do. I have since learned this and I know now he was hurting as much as I was. He just chose to accept it and LOVE her no matter what. He knew I was completely emotionally and mentally unavailable and if HE didnt pull himself up by the bootstraps and deal, then Makily would have had no one.

I will never be able to repay him for being Mommy and Daddy to her during that time when I couldnt even be a wife much less a Mommy to a baby that I thought was going to die.

I obviously eventually pulled MYSELF up by my bootstraps and got it together with the help of Allen and my family.

Life with Makily has always been difficult. Life with Makily though is much sweeter than ANY OF THE DAYS I lived before her. I look at her NOW and see perfection. I've never seen a spirit more perfect than hers. Ever.

Then the decision to not have any more bio children. Allen again was a rock...he told me that he would do WHATEVER I wanted. If that meant putting us through IVF with PGD, adoption, fostering....he was down with whatever I thought I wanted to do.

That is love. Knowing that ONCE AGAIN he may have to carry me through another emotionally, heart wrenching situation and he was willing to do it again...to make me happy.

He is the most selfless man I have ever met.

Nothing is ever easy for us and so getting our foster license was a pain in the ass, then we got Jakob and I realized there was no way I could ever give this child "back". Literally the second they put him in my arms I knew. I told Allen on the way home, "This is bad, I can't let him go........" Allen was stand offish with Jakob the first three days. He was afraid and he knew that I was already so in love with this baby that he had to be the strong one. He knew it was very possible they could take him away with little to no warning. On day four I noticed Allen holding him more, playing with him and feeding him. It made me happy and afraid. I knew now we would both be heart broken if they took him. In the times that we thought they would...and there were many, Allen showed his concern but held back a lot and I knew it. I didn't push it though because I understood him now. I got it.

Allen has taken on the responsibility of being my rock. He has taken it upon himself to be strong when he KNOWS I can't do it. When it comes to medical decisions with Makily he tells me he trusts the decisions I make. The medical part of this is MY strong point. I know just enough to make me dangerous which is good and bad. Sometimes I wish I didnt have the back ground I do because when they say certain things I panic, because I have seen the outcomes before with other kids when I was working. Allen has not seen those things, so while we discuss all the medical decisions made about Makily, ultimately he leaves it up to me. That's my strength.

We compliment each other, he is my soul mate.

I joked with him this morning saying "If you knew then what you know now....I bet you would have run like your hair was on fire." Then I said I SURE WOULD HAVE! LOL

We didn't know and I am glad we didn't know. It has made us closer than I think I could ever be to anyone else EVER. No one else has lived what we have lived through.

No one else knows the pain I know and live with EACH DAY....except Allen.

No one knows what it is like to love not only Makily BUT Jakob who we also have no idea what his future is going to look like.

No one could have walked this chaotic, difficult, painful, happy, insane, crazy, wonderful, beautiful, LIFE ALTERING road with me but him.

I love you forever Allen, you are my rock, my soul mate and I am forever changed because of you. Thank you for always carrying me when I couldnt take one more step. Thank you for all the times you have had to carry Makily, Jakob AND ME at the same time. I will never be able to tell you how much you mean to me.

There just aren't words in the English language to describe it.

I love you forever.

Grieving when you have a special needs child.

2011-09-05T10:30:00.004-05:00

Grief blows.

It just does.

*huge sigh*

The moment Makily was diagnosed with ES my grieving process began. LITERALLY that second. It was like a part of WHO I WAS was ripped from my soul. Left empty. A hole in who I am as a person....and there is NOTHING that can fill that hole. Sometimes I feel like it's just gaping open, bleeding and I have no idea how to close it.

As long as it is open I am tortured by it.

I'm tortured by the things in my life that I cant change.

I recognized the part that was ripped from me immediately. It was the part of me that was carefree. The part of me that didn't TRULY understand the emotional pain of a loss so great.

A loss of EVERY SINGLE dream I had made for my child....they were lost in an instant.

EVERY. SINGLE. ONE.

None of my dreams for Makily would ever come to fruition.

I was even uncertain if I would see her celebrate her first birthday.

That's heavy.

My rose colored glasses turned black almost instantly. I remember the angry feeling, my arms crossed over my chest, my legs crossed while I nervously kicked my foot in a rhythm with how fast my heart was suddenly pounding. It felt as though an elephant was sitting on my chest and I could barely breathe. The nausea would come in waves between my sobs. The doctor continued to speak and I just kept kicking my foot wanting to go back in time. To a time when my life was "perfect". When I was pregnant and happier than I had ever been. Then KNOWING I could NEVER go back, no matter how much I ached to. I remember being angry so many people were in the room to witness the most devastating moment of my life. I remember thinking they must all feel so sorry for us. I would have if I were in their shoes.
Then I realized at the end of the day they could go home and turn it off......I could never just go home again.

Ever.

We all go through the stages of grief differently. Some stages I skipped. Some I have wallowed in, especially anger. I cant say that before Makily I believe I was an angry person, now sometimes I realize I am fighting the anger back more than I would like to admit. The anger of seeing someone with a normal child that should never have had children. The anger of seeing things come so easily to some while I struggle to figure out a way to help Makily swallow more efficiently so her clothes arent drenched. And okay, how about this.....if I'm being honest I'd like her to swallow better so people don't stare at her at age seven, wearing a bib. So people are more readily accepting of her. So people won't hesistate to pick her up, sit next to her and love her like she deserves to be loved. So people will realize that their showing HER attention isn't some wonderful thing THEY did but that they will realize THEY ARE PRIVILIDGED to even be in her presence much less know her.

I remember feeling alone. Segregated, DIFFERENT. Outcasted. Truth be told I've never totally felt like I TRULY fit anywhere. So THIS information was the NAIL in the coffin for my ever feeling like I fit.

How can I fit?

Where can I fit?

Then I found a place. It was with all the other special needs parents.....all the parents that felt that SAME struggle with grief. The parents that don't look too far down the road because it's too scary. I try not to think past the next week....month with Makily. If I look at five years from now I feel anxiety nearly take over me and even TYPING about it makes my heart pound.

In my search for people to "fit" with I reconnected with my friend Carrie. We had gone to High School together and her son was born with cerebral palsy. Then she passed away in one of the most shocking, horrifying and just senseless ways. Leaving Sean to try to pick up the peices and do it all on his own.

I stood back and I asked why.

I have developed so many relationships with other families of special needs children. I feel a sense of understanding and belonging I cant find elsewhere. On the other hand I have found that when I'm too close, and something negative happens to a child or family I have connected to that it sends me into such sadness. I want to fix it for them. Take away the agony they are feeling. Someone told me recently that I feel things TOO MUCH. I think this is true. I do. My emotions are stronger and more pronounced than anyone I know. I'm not sure why. I have always been this way. Allen jokes that nobody cries alone when I am around and that is the GOD'S HONEST TRUTH.

I remember sitting on my friend TJ's bed BAWLING with my friend Latena that had just lost her baby to a premature birth. She and I sifted through photos, hair clippings, a pillow and all the mementos that she had hoarded in the desperate attempt to always remember her first child. Why did this have to happen to her?

I have seen many Emanuel Syndrome babies and children die suddenly. Some struggling for months before their FIGHTING SPIRIT is not enough to win over their failing body that they were born in. Some of them are happy and playing, then dead the next morning. Their parents devastated to walk in and find their baby they have watched fight for years....gone. Another hole left that can never be filled.

A couple of years ago I posted about meeting a family that had a son born with Trisomy 18, little Caleb. They live in Ocala. Local. I met Caleb aka MIGHTY MOUSE and my breath was taken away. I remember holding him and realizing what a MOMENT that was for me. He was still a tiny guy and the way he breathed BROUGHT ME BACK to when Makily was his age. He sounded identical to her. I wanted to wave a magic wand and fix what was wrong with his breathing. I wanted to grab Jeannette in my arms and tell her she was going to get through it. I wanted to tell her all the things I wished someone would have grabbed me and told me when Makily was that age. I didnt though. I knew those things I wanted to tell her would only come with time. Instead I talked to the angel laying in my arms. I told him how perfect and amazing he was. I cherish that moment so much now. Caleb passed away August 29, 2011....a week ago today. The paper did an article and photos as they have followed his story since birth. I sat looking at the photos and feeling such sadness for this family. It brought me back to the times I've sat staring at Makily looking much like sweet Caleb did in the photos. Skin pale, eyes closed to slits, tube down the throat, machines beeping, IVs running, tethered to more wires than I could count.......wondering when I would be able to say ENOUGH is enough. Dreading the moment that Makily's body would decide enough was enough.

I will shamefully admit I had kept myself at arms length with them. I was afraid. Afraid Caleb would pass and that I couldn't handle it. Afraid it would overwhelm me with grief and uncertainty.....for us....for Makily. Afraid I would be unable to comfort Jeannette, his mother who lovingly and graciously took care of this angel for 29 months. She would have done it for 100 years....happily. Jeannette who's faith NEVER seemed to have wavered. Even in the times when Caleb lay sick and moaning in pain. Jeannette never questioned her faith. I admired that about her. I still do.

So my lesson learned here is this. I can't let my fear and grief cripple me. I can't at the end of the day say it was too hard so I sat down and watched from the sidelines. I can't hide from life and living. The times I am happiest is when I am putting myself out there. When I am taking a chance that YES I may get hurt but the experiences before the hurt outweighed the hurt, and that I have become a better person because of them. I have made decisions in my life I never would have expected to make since Makily was born. Some good, some bad, some made because I desperately have been looking for years to fill that "hole". I'm not perfect. Far from it. In fact some days I feel like I've been rolled in the mud and drug through a knot hole and that I'm desperately trying to wipe myself off........

I am trying to become a better person. This doesn't mean I am perfect or that I think I am better than anyone else. Just means I want to better me.....for Allen for Makily for Jakob.....and eys for myself too.

Dearest Caleb,

Mouse, you touched my life in ways that most adults would never be able to. YOU little one have taught me not to live in fear anymore. To live life to the fullest. To love without reservation, to experience EVERYTHING and to strive to be as perfect as your spirit is. Fly high Mighty Mouse, you are one of my hero's and I will never forget you.

Jeannette and Steven,

We love you so much and if there is ANYTHING we can do to lessen the load on your backs right now, say the word. I will never stop wishing for that magic wand to wave away all the pain you are feeling. Bless you both. Know that you were EXACTLY what Caleb needed and he was exactly what you needed.

In LOVING memory of

Caleb Nathaniel Adamyk

March 20, 2009 - August 29, 2011

29 Glorious months on this earth.

Rest in Peace Mighty Mouse, you are so missed.

The Highs of being Makily's Mom.

2011-07-10T17:58:00.002-05:00

1. Each time she smiles is like the first time she smiled. We weren't even sure we would ever see her smile. To this day my heart still skips when she smiles.

2. I feel much the same way each time she laughs. She has the cutest, tiniest laugh. She *almost* sounds like a munchkin from the Wizard of Oz. Other times she just chuckles and other people may not even realize she's laughing. I do. Every time though. Her shoulders will go up and down, she'll have a huge grin on her face....and if you listen really closely you will hear her squeak in between chuckles. I find myself wanting to stop time each time she laughs. To bottle it, to carry it in a little box with me forever. To always have that perfect angelic part of her forever.

I just went back and read this paragraph. It occurred to me that maybe some of what I wrote sounded "stalkerish". Maybe like one of those overzealous, hovering mothers. How is it I know each sound, body movement and facial expression that my daughter exhibits when she is happy? How is it that I have somehow memorized these things without even knowing it or without it occurring to me? It is BECAUSE I live each day in fear that my child will leave this earth before me. It is because I never know if when I get up in the morning if Makily will still be with us. In the mornings I go to her room hopeful that all is well when I get into her room. I even have learned to push that so far back in my head that I ALMOST don't think about it and walk quickly into her room to get it over with. Like ripping off a band aid. I'm not sure if quick is better or not. My fear that a seizure will take her in her sleep makes me insane. So insane that she is SEVEN years old and I still have her on an apnea monitor for infants.

I memorized those things about Makily because we have always known that she may leave this world sooner than any of us want her to. Every thing she has accomplished to us has been AMAZING. Everything she does is amazing. SHE is amazing. All that could stop abruptly and all that will be left is all the incredibly changed people that she touched, and all the memories we have made with her.

There are so many more Highs of Being Makily's Mom. I will stop with just those two for now though. Why? Because those two things, make ANY of the low worth EVERY. SECOND.

I love you Makily.

Changes, Updates and More.

2011-07-10T14:19:00.003-05:00

Changes:

Makily started having seizures again in February. The first one she had at age two nearly gave me a nervous breakdown. That was FIVE years ago. I had gotten comfortable. She was at school this time and I got a call from her teacher. All she said was "Trish, just come quick.", her voice was panicked. I hung up the phone and ran screaming for my friend Trish to get the Jakob (he was napping) and get in the car. I stupidly got in the drivers seat. Screaming and hysterically crying the whole way there. I remember saying "What if she stopped breathing....What if she is dying....What if we don't get there in time.....". Of course all the way there we were stopped by traffic lights, trains and every slow person in Ocala. When we came upon the train Trish asked me if I wanted her to drive and I got out and let her. Once we got to the school Makily was in the ambulance. She looked out of it. We had a horrible time getting an IV placed. My sister Deborah ended up having to do it although I'm sure that was hell on her to have to do.

The next one she had was AGAIN at school. This one was rougher. It went on for a total of seven minutes. They gave her rectal diastat at the three minute mark. The school nurse ended up having to give her rescue breaths before the Ambulance got there. We already had a neuro appt for the next day so she was monitored for a while at the ER and then sent home.

Neuro added a new medication, Keppra and has kept her on Topomax. Since then she has not had another one. Her EEG's still show frequent abnormal brain spikes though so this obviously is another worry on my mind.

Updates:

Jakob is coming along with his speech. It's slow going but he understands SO MUCH. Just hard for him to get it out. His impulsivity is worse and he is hard headed. He punched a girl in the face at school for no apparent reason. At times he bites, he banged on his bedroom window so much that it broke. We had done everything we could to get him to stop so when it broke we replaced it with plexi-glass so he won't get hurt. He CRAVES sensory stimulation so he is always jumping, running and rolling. All that being said he is a sweet kid. He loves to give hugs and kisses and can't give one without giving the other too. He is outgoing and friendly most times. We have a new chihuahua named Sally. We are desperately trying to get the two of them to be able to co-exit without killing each other. I'm not sure that Jakob understands the dog is NOT a toy so that's something we remind him of OFTEN.

Makily will be going into SECOND grade next year. Jakob will begin his second year of Pre-K. I'm hoping to see tons of growth from him this year as far as his speech and impulse control is concerned. We do have an appointment with a specialist coming up for him.

I went to a conference for families of children with Emanuel Syndrome. It was an awesome trip but tiring. I loved meeting all the kids, they each have a special place in my heart and always will. Makily did well on the trip. I was very proud of her. Everyone adored her and loved on her. There will be another conference next year in November in ORLANDO. I can't wait for that one and I hope I get to help plan it.

More:

As far as I go, I'm hanging in there. The last year has been challanging to say the least. I honestly haven't been the same since Makily had the seizures again in February. It was like a slap in the face of reality that I like to hide from. Since that time I have realized AGAIN that I will never be able to relax when it comes to her. Each day with her is a gift. I never know what to expect. It scares me. Two ES kids ended up being taken out of the hotel at the conference via ambulance for seizures. That sucked. I also have realized that Jakob is still far behind in his expressive language and if he is going to start "normal" Kindergarten when he turns five he really needs to progress this year. It's more and more apparant by his behaviors and speech delay that all the drugs and alcohol did effect his brain development in utero and so I've had to force myself to accept that I have TWO special needs kids and not one. I still have hope that if we just work with Jakob enough and support him enough that he will grow up and be able to live a normal life.

So there's my update. I will try to post more here, in fact I want to. I've been so down for so long now that it can't hurt. Maybe it will help.

For those that miss me/us.

2011-04-03T09:28:00.002-05:00

As many of you know I freelance write for our local newspaper. I have been asked recently to begin blogging there. I had hesitated blogging there too much for fear my material would then be owned by someone else. I have seen been reassured this is not the case. I have a few entries up there and will be blogging there once or twice a week (or more depending on how much time I have). I may feature some old posts from here every now and then. Right now I am trying to play catch up as so much has been going on with our family. Sometimes I feel like I can't keep up. I hope to see you all there. Here is the OCALAMOM site link: OCALAMOM This is where my blog entries will be: MY BLOG ON OCALAMOM I am keeping my blogger open as there is so much material here. I may start blogging back here again eventually, I'm not sure. So keep this link too. I'm on facebook and that is so easy and quick to update that I have been using it a lot. There has been a lot going on with us as of late, Makily started having seizures again. It's been a whirlwind but we are managing it. Hope to see you all at the new site. Love, Trish

Would the WHY of it even matter anymore!?

2010-11-30T08:27:00.005-05:00

*Disclaimer: I realize this is a come back post of sorts but it is seriously depressing. This is how I'm feeling lately and I know that writing these things out helps me IMMENSELY. Read at your own risk.*

I wish you could have been born a healthy little girl. I wish you didn't have to suffer and I wish it didn't end this way. I miss you my little Princess. --Roni Hughes to her angel Alayah.

I have struggled a lot the past year with WHY.

Obviously I will always question why Makily was born with Emanuel Syndrome. That is something that I will never understand. I think for me though the moment that I began to struggle with my faith and my belief in god is when I realized that no matter the WHY of it, nothing would ever justify Makily not having the life she deserves.

Even if God himself came down from Heaven and said "Patricia, Makily has Emanuel Syndrome because xyz." It still would not make me feel better.

I would still be angry at him for it.

As a person who was raised in church, that was baptized at MY request at age five, and that has prayed on my hands and knees for years, it's hard to grasp and admit you are angry at God and that at times you don't even know if he is or ever was there.

Just typing that made me cringe and I'm not even sure if I will have the guts to publish this post.

I think maybe I have seen too much. Too much pain, heartache and hurt. Too many INNOCENT children suffering, too many dying as their parents are left here...with empty arms and broken hearts.

The quote that started this post was about a baby girl that died Sunday evening. She was only a couple of months old, had Emanuel Syndrome and never was able to leave the hospital. Her mother was just 18. She handled the immense pressure of having a baby with all of the medical problems Alayah had better than I think I did when Makily was born and I was 26. I watched as Roni matured in what seemed like overnight.

Then Alayah died.

I want to know why God put Roni through that. Why would he allow sweet Alayah to suffer and endure all she did and then take her away?

...and again there is no answer that would justify it in my eyes. I doubt there is one for Roni and Alayah's Dad Thomas either.

My friend and soul sister Stephanie has a daughter Maia with Emanuel Syndrome. Maia of course was born with the myriad of problems that comes with ES. They've been through surgeries, procedures, doctors, illnesses etc etc etc. Maia began having rages and screaming fits for hours on end when she was about 10 or 11. She is now 15 and they have tried many medications to help her (along with the side effects of each medication), she's had MRI's, CT's, blood tests you name it. Stephanie has had doctors accuse her of just not wanting to deal with her "retarded child". Reality is that I have seen videos of these fits and Maia's rages and it absolutely breaks my heart.

They now think Maia has Limbic Rage.

It's basically a disorder in the mid brain caused by what I believe in Maia's case is a lack of oxygen to the brain for a period of time (and with our kids their airways and respiratory system are so fragile at birth they very well have gone without enough oxygen to their brains for periods of time during a crisis). Limbic Rage causes the exact symptoms that Maia has. Rage, screaming, anger, hallucinations, violence and the list goes on and on.

It's bad enough that Maia has Emanuel Syndrome. God...can you explain to me why ON TOP of that she has to have THIS disorder too? Can you imagine what it must be like for Maia when she goes through these rages? Can you imagine how confused and scared she must make herself? What about what it has been like for Stephanie and Martin to watch their little girl go from the happy giggly child she once was to the screaming, angry one that seems trapped in her own mind and body....unreachable.

As many of you know a friend of mine passed away two years ago. Carrie Hammer and I had known each other for years. Her son Brennan was born with severe cerebral palsy. She and her husband Sean dealt with numerous medical complications and hospitalizations. They did it together as team though. They were making the best of it. Then Carrie died in the car accident. She drowned trying to help Sean get the suction machine they needed to suction out Brennan's trache after he had gone under the water after the crash.

Why did God let that happen?

Sean is now left with three children one of which is very medically fragile. I can't imagine the challenge he faces EVERY. SINGLE. DAY. I have the utmost respect for him because he has just kept going. He continues to get up every day and take care of those kids when I am sure there are days he would rather stay in bed and not deal with anything......

....and again I am not sure there could be a reason why that God could give me that would make that situation "okay" in my eyes.

I could go on and on with situations like this. I won't though because it would just be depressing and I think this post is depressing enough as it is.

Great come back post btw huh? Now all my readers will be running to the nearest window and wanting to hurl themselves out of it. SORRY BOUT THAT GUYS, this is where I'm at right now.

I've heard so many smarmy lines since I had Makily. Cliches that at one time actually DID make me feel better.

"Oh your a special person, you are so strong, God wouldn't have given her to you if he didn't think you could handle it"

Bullshit.

How many babies are born to drug addicted mothers? The baby is then tossed into foster care and sometimes are bounced back and forth. Obviously those mother's couldn't handle be mother's to those babies and God gave them to them anyway.

I am no better or stronger than your average person. I am Makily's mother and am only doing what a "normal" parent does when thrown into a situation like this. I had no choice and neither did Allen. It is what it is and we had no option OTHER THAN to deal with it and try to make the best of it. Believe me there were times I didn't want to deal with it and would have rather laid down and died. Thankfully Allen, my family, medication and my love for Makily kept me from doing that.

"Everything happens for a reason, THERE IS a reason Makily has Emanuel Syndrome look at all the lives she has touched and people she has changed".

I agree with this. Makily has touched many people and changed many lives, probably more than I will ever know or be able to grasp in my lifetime. That being said WHY SHOULD MAKILY have to suffer, endure and be cheated out of so many experiences to change someone else? She deserves to experience EVERYTHING that is good in this world and she won't. I was at the park with her the other day pushing her on the swing. I found myself scanning the place for anything else she physically would be able to do. There was nothing. Then I started thinking how I wish I could figure out a way to strap her to me, then I would do all those things and it would be like SHE was getting to experience them (although I'm sure I'd look like an idiot sliding down the toddler slide with a six year old strapped to me). I suddenly realized how sad and depressing that thought was and had to fight back tears.

So my friends this is one of the reasons I have not been able to write. I prided myself for so long on being able to be positive (mostly) about Makily's having Emanuel Syndrome. I wanted to help other parents see the good side of things. For a while now though, I just have not felt that I could BE the positive inspirational person I wanted to be. I can't pretend to understand and be okay with all these things. That's just not me.

Maybe writing THESE feelings out though will help someone else and maybe someone will say something in response to this entry that will be a light bulb moment for me.

I don't know.

I doubt it.

Jakob's Diagnosis.

2010-06-28T22:00:00.005-05:00

We knew some of Jakob's prenatal history the day we decided to welcome him into our home.

I was scared to death as we were taking a baby I had originally said in our "pre- fostering rules" we wouldn't take.

Jakob's mom had been on methadone during his pregnancy and he went through withdrawl at birth.

I think the ONLY thing that swayed me away from our "no meth baby" rule was that he was four months old and through the worst of the withdrawls at that point. We had also been waiting for so long and I desperately wanted to go swoop this baby up the moment they called us about him. I wouldnt take it back for one second.

As time went on I slowly started finding out other things Jakob's bio mom did while she was pregnant with him. None of it swayed our love for him or our decision (almost from the day he came to us) to adopt him if he became available.

Jakob was exposed to alcohol during the entire pregnancy.

He was also exposed to crack and cocaine in the last trimester.

Jakob's speech has been delayed for some time. He's been in Early Steps since he was a year old and Early Intervention pre-school since right after he turned two. He also gets speech therapy privately once a week.

Jakob is a very BUSY little boy. He does have some pretty WICKED tantrums when he does not get his way and they can last a while. He has trouble paying attention and can't attend to anything for very long unless it's something HE is choosing to attend to.

All of these things are typical two year old behavior....I always have a hard time gauging how he should be acting because Makily was never a typical two year old.

Due to the alcohol exposure the adoption agency set up an appt for Jakob to be evaluated for Fetal Alcohol Syndrome. It takes months to get in to them which is why we just went for his evaluation last week.

I was impressed with the FAS clinic team. There was a child psychologist, a speech therapist, an occupational therapist and a physical therapist. They had me fill out questionaire's on Jakob's development and behavior. They each evaluated him individually and as a team. They also took pictures of Jakob's profile and straight on shots. These pictures were loaded into a computer program to intricately measure his features . Children with FAS have a handful of facial features that are sometimes commonly seen.

In the end they took us (me, Jakob and both my sisters who so NICELY both rode along with us for the 2 hour trip) to a conference room and gave their opinions.

They did not diagnose Jakob with Fetal Alcohol Syndrome or Effect.

He was diagnosed with "Sentinel Physical Findings Static Encephalopathy alcohol exposed".

So what the heck does all that mean?

Fetal Alcohol Syndrome has a spectrum much like Austism does. The diganosis he has been given falls under that spectrum and basically means that during development parts of his brain were damaged and/or did not form correctly due to the alcohol exposure. They explained that Jakob has some sensory issues (which I really didn't pick up on until they were pointed out to me, I'm used to seeing such SEVERE sensory issues with Makily that I didn't pick up on the small quirks Jakob was exhibiting). Most of the sensory issues they found were oral motor related. They also feel he would benefit from deep tissues massage, a trampoline (a small one for kids) to give him that deep stimulation to his whole body. They said he is about a year behind right now. We have only a hand full of words and lots of frustration because he just isn't able to tell us what he wants. It's getting better and he is making LOTS of progress. He is signing more when he wants a drink or a snack.

He will consistently say Mama, Daddy, bye, uh oh, no, yeh...and "HOLLA" (lol srsly he says HOLLA!) . At times he will try and repeat a word you said but it usually comes out garbled. He understands EVERYTHING you say to him though. I can say "Jakob give mommy the remote". He'll go get the remote and hand it to me, same thing with just about anything in the house. He said pretty over and over again when looking at a picture of Makily the other day but I can't get him to say it now. I do think part of his delay is because he is stubborn and does not like to be told what to do. He is very good to Makily, he LOVES her and will sit next to her on the couch, sometimes will get on her lap and BEAM if she shows him ANY form of attention. Usually she pats him over and over on the head or back and he just giggles. He holds her hand when they are in the car (that makes me teary just typing it), and when she drops her toy he will run to pick it up and give it back to her (most of the time he gives it back to her lol). When we stand her up he runs over and throws his arms around her and just stands there hugging her. She in turn patts his head or puts her hands around his neck and he thinks that's just great (hey he doesnt realize she's actually trying to strangle him lol).

They told us that children with FAS disorders typically have attention problems, impulse control and behavioral concerns. Of course the severity can't be known at this point. It may take years before we know exactly how this is all going to effect him. They did suggest we evaluate him for ADHD when he is five or six. FAS kids also usually need some sort of ADHD medication to help them focus at school and make learning easier for them.

So how do I feel about all of this?

I already knew it. I knew he would likely have issues from his prenatal history. I can't say I don't care because that's not true. I care, I do. In fact when they started talking about brain damage and saying words like "static encephalopathy" it made me cry. I was sad for HIM. Sad that he has these extra challenges in front of him.....and they all could have been prevented.

I think what I am trying to say is that my love for him is no different then before he had a "label". He is still MY SON. I love him just like I love Makily and we will do everything we can to help him.

I will say though that never in my wildest dreams did I think I would have one child with a severe genetic disorder and another one with alcohol induced status encephalopathy. I really never dreamed that I could have two children with those issues and be sane.

Maybe I am not sane anymore and that is why I am handling it all so well?!

Maybe part of me is convinced that all of this is just typical two year old behavior and by the time he starts kindergarten he will be totally caught up and I won't see any lasting issues at all from the alcohol exposure?

Maybe I'm in denial.

I'm not sure.

Edna update....FINALLY!

2010-06-27T09:39:00.003-05:00

Huge apology to all my bloggies. I have really slacked and all the emails asking about how I/We are have really touched me. Sometimes I don't realize how many people read my blog and care about us. It's when I am away from my blog for a while and start getting emails asking where and how we are that it hits me. It's amazing to me that people we have never met or do not know personally have love and care for our family. Thank you all. I am so sorry and yet again I will try to start blogging again regularly.

Ok so on to Edna.

Edna IS a brain tumor.

Here is her picture. She's the big white blob on the right.

Do we know EXACTLY what she is even after seeing the Neurologist?

No.

I saw Dr. Disclafante. He was EXTREMELY nice. It's not common for me to see a doctor (and with Makily we see lots of them) and immediately click and like them but I did with him. Very down to earth and to the point man. He looked at the x-rays and said he feels what I have is a Choriod Plexus Papilloma. This is NOT the one that I assumed was related to my 11,22 balanced genetic translocation. He said it is VERY, VERY unlikely that it is cancerous.

He said there is no way of knowing for sure what exactly it is without doing one of two things.

1. Brain surgery to completely remove the tumor.

2. A biopsy to test the cells in the tumor.

*blink*

Of course both of these options well...SUCK.

He and I both agreed that since the tumor is not causing any neurological symptoms (seizures, headaches, nausea, blurred vision, memory loss....okay well maybe it IS causing the memory loss....what were we just talking about? ha ha) that we will just wait and watch. I will have a follow up MRI in a month (three months after the initial MRI) to see if Edna (aka my brain tumor) is growing and if she IS growing how much and how fast. The doctor does NOT feel she is going to be growing very fast as he also believes it's likely I've had Edna all of my life.

He said that I may not ever have any problems from her but he can't say for sure until the follow up MRI to see if she is growing and how fast.

So basically YES I have a brain tumor...her name is Edna and right now it seems as though Edna is a friendly brain tumor and I get to keep her.

**btw I am not exactly sure why my spacing is all crazy. I tried to fix it but it keeps cramming everything together. STrange!*

Jakob likes 911 and "I SWEAR OFFICER I'M NOT A BATTERED WIFE"!

2010-04-14T09:56:00.003-05:00

***If you have not read my LAST ENTRY you should read that to understand this one completely***

The day after the accident Allen and I got new cell phones.

Blackberry Curves, LOVE THEM.

Allen took the SIM card out of my old phone and gave it to Jakob. HE LOVES a phone and so Allen thought WOW this will remedy the problem we have with him always trying to get ours.

What we didn't realize though was that EVEN THOUGH there was no SIM card in the phone....you could still dial 911.

*sigh*

Jakob was walking around the house with his phone when I could have sworn I heard someone talking. I ran to him, grabbed the phone and someone said:

"911 what is your Emergency"?

Here's how our conversation went:

ME: OMG Ma'am I'm so sorry, my son dialed 911, everything is fine.

HER: What is your address, I need to send an officer?

ME: Oh no ma'am NO NEED FOR THAT....my two year old dialed you, see we got these new phones and took the SIM card out of the old one and.......

HER: Right, he can still dial 911 with the phone though...what is your address?

ME: SIGH....Fine, my address is.............But really you don't have to send anyone, my son dialed 911.......I tried to tell...

HER: An officer will be out shortly.

GREAT

JUST

GREAT!

About fifteen minutes later there is a knock on my door. I open the blinds and sure enough...it's a cop.

SIGH.

I open the door and immediately start stuttering saying "I'm so sorry officer, my son dialed 911 and see we got these new phones and we didn't realize if you took out the SIM card in the old............"

All the while he is staring at my eye and forehead.....I guess because it looked like THIS:

Heh...heh.....yeh.

To make matters worse when I think I am in trouble the more I try to explain something away whether I am guilty or not (and you know I am never guilty;-) I MAKE MYSELF SOUND LIKE THE BIGGEST LIAR EVER.

The officer waits for me to stop stuttering and yammering and says:

"What happened to your head and your eye".

To which again I begin stuttering and stammering saying "Oh this, I was in a wreck yesterday, it's actually kind of funny that you are here and I am dealing with the police two days in a row, I swear this is from the accident, did you see the STONE HILL sign up there...well I did that....."

Then he demands the police report from the accident.

When I handed it to him, he starts to read it, his face lights up and he says:

"OMG YOU ARE THE LADY THAT GOT REAR ENDED BY FLORIDA HIGHWAY PATROL YESTERDAY"?

sigh

"Oh yes, that was me, how did you know about that"?

He then explains that they "all" knew about it and that everyone was giving the officer a hard time and that I was the "Poor Mini Van Mamma".

LOVELY.

He then asked to see Jakob and left with a big grin on his face.

A week later I was walking into the gym. That particular day I was tired of wearing my sunglasses on the treadmill so I braved it with my black eye out for all to see. I was walking to the treadmill when I noticed a man staring at me. The closer I got the more he stared, which I assumed was because I had a black eye. Then he smiled very big, jumped off of his treadmill, ran over to me and exclaimed "OMG HOW ARE YOU", THEN HE HUGGED ME! Initially I had no idea who this guy was and was about to PUNCH HIM when I realized.....THIS IS THE GUY THAT REAR ENDED ME!

He said he thought it was me when I walked in but that when he saw that black eye HE KNEW IT HAD TO BE ME. We joked around and he told me he had gotten nothing but grief from his fellow officers about the accident. The officer that had come to my door the week before called him after he left my house and ragged on him saying "Dude you should really feel bad, that poor lady looks like someone beat her up, I can't believe you hit poor Mini Van Mamma".

OY.

Ocala, it's a small town.

The Wreck.......and what's that in my brain!?

2010-04-12T11:20:00.006-05:00

In February I was in a car accident.

I had dropped the kids off at school, gone to the gym and was coming home. I literally was turning INTO my subdivision. Mid turn I was rear ended. I lost control, and went off road straight into the neighbors yard. The drop from the road to yard was un even so the van shifted to the left and my head hit the drivers side door window.....pretty hard. I felt the impact of that but didn't have time to think because then I ran over our subdivision sign which deployed the air bags. When that happened all I could see in front of me was well...airbag of course and A HOUSE that I was going straight towards. I went to hit the brakes and in my panic and confusion (I had just hit my head AND had an airbag in front of me) hit the gas. SIGH. Luckily I got it together enough to hit the brake and my van literally came to a stop five feet from my neighbor's front door.

My Trajectory...scary I say!

When the van came to a halt, I saw smoke, panicked thinking it was on fire and got out. It was just barely raining. I sat down on the ground a few feet from the van and that's when I noticed a red SUV across the street parked.

The lady that lived in the house opened her door (in a mumu and curlers btw lol), looked shocked that there was a van in her front yard.......then she noticed me sitting on the ground and said "OMG WHAT HAPPENED!"

She ran back in and called 911.

A man got out of the red SUV ran across the street. He sat down next to me and asked if I was okay. I was shaking and hyperventilating at this point. I had been trying to catch my breath but was so shaken and confused. Between gasps I told him I think I am okay but my head really was hurting. He looked at my forehead and said "Well you do have quite a goose egg there". He told me to try to slow my breathing down. Then looked me over. He saw burns on my arms and explained they were from the air bag. I told him maybe we should move that I thought there may be a fire in the van and he said no the smoke was from the airbags too.

Then he did something that was very surprising.

He put his arm around me and said:

"You realize this is all my fault, I rear ended you I am so sorry. I am an under cover Florida Highway Patrolman and that's an unmarked car, I already called this in before I even got out".

I just started crying. I am not sure if it was out of relief that this was an honest man. He was a cop that wasn't going to try and pin the blame on me somehow.

The more he talked to me the more I started to calm down. He had his arm around me most of the time saying how sorry he was and talking me through slowing my breathing down.

The ambulance arrived. The paramedics were SO nice and they advised I go ahead and take a trip with them to the ER because of the bump on my head. I quickly told them my sister was a paramedic and to call her. By the time they had me loaded up in the ambulance I had calmed down and was actually joking with the paramedics. I apologized for how bad I must have smelled. I had just come from the gym and told them had I known they were going to pick me up I would have showered first. They told me that I didn't smell that made me happy! LOL

About an hour after the accident.

Once in the ER, the doctor and nurses were surrounding me asking questions, taking off my shirt, putting a gown on me. I was hoping they would leave at least for a second. I had worn a waist slimmer belt to work out with . It was all sweaty and nasty and I didn't want to say HEY I'M NASTY....don't mind me taking off my nasty fat girl waist slimmer belt LOL.

The doctor told the nurses to bring in the ultrasound machine so he could scan my belly. I'm thinking okay here's my chance, they will leave....NOPE. She rolled it right it and he pulled up my gown to reveal my sweaty belt.

LOL

So I say "Uhm, I'm normally a clean, fresh smelling gal, but I was coming from the gym and this belt is supposed to make you lose more weight in your tummy and so it's sweaty and gross".

*blink*

*blink*

The doctor looks at me straight faced and says...."Well can you take it off so I can scan your belly".

HAHAHAHHAHAAA

I ripped it off and was mortified to see the nasty sweat on my stomach.

SHOOOT ME.

He didn't even flinch, scanned my tummy and said all was fine.

They sent me for a CT scan a few minutes later and made me pee in a cup.

I was discharged the same day with bumps, scrapes and bruises. My knee and my head were hurt and the van was totalled but knowing it could have been much worse I was relieved.

Day three....you should see the other guy.

My thigh (omg how fat does my leg look!)

My knee

Upon discharge the doctor explained that while my CT did not find any bleeds or problems from the accident they did see an "asymmetrical enlargement of the choroid plexus". He said I should see my primary doctor and have an MRI to be on the safe side.

I didn't think too much of it, immediately chalked it up to possibly being something to do with my 11,22 balanced chromosomal translocation. A normal abnormal....no big deal.

I had the MRI two weeks ago. Really I only did it because I thought it would be interesting to see what was in my brain LOL. I wasn't concerned.

The doctor called me Thursday and says there is in fact a mass in my head. He explained he is referring me to Neurosurgery.

*blink*

*blink*

I got a copy of the report. It suggests that the mass is one of three things.

1. Choriod Plexus Papilloma

2. Hemangioma

3. Meningioma

I am pretty sure it's a Meningioma. Reason being is because under causes in the link above it states:

The most frequent genetic mutations involved in meningiomas are inactivation mutations in the neurofibromatosis 2 gene (merlin) on chromosome 22q.

If you look farther down under References number four says this:

^ Lekanne Deprez RH, Riegman PH, Groen NA, et al. (April 1995). "Cloning and characterization of MN1, a gene from chromosome 22q11, which is disrupted by a balanced translocation in a meningioma". Oncogene 10 (8): 1521–8. PMID 7731706

While I don't quite know what all of that means, it mentioned balanced translocations and chromomsomes 11 and 22. I have a balanced 11,22 translocation so........

My friend Stephanie the originator of the http://www.c22c.com/ website and support group has forwarded this information to Dr. Emanuel herself to see if they have any information about this and if she thinks the two are in fact related.

All that being said, I'm a smidge nervous. Not like one would imagine one would be when they have been told they have a mass....a gasp...TUMOR in their brain. I don't know if it's denial or ignorance on my part (I do have a brain tumor you know?) but I am not freaking out about this. I think I have a hard time believing I could possibly have brain cancer (see it was weird typing that)? I am not sure why because I mean.....I do have a little girl that only had a six percent chance of being born and she is here soo.....

My hope is that when we see the Neurosurgeon he will just suggest a PET SCAN and then just monitor it from there. I don't want anyone poking around in my brain, I mean I really don't want anyone to mess with my sparkling personality right?

We have decided to name my tumor Edna. She is old.....as the MRI states there are some calcification's which means it's been there for a while. I intend on blaming EVERY mistake I make from here on out on Edna.....

ALLEN: Trish you started the baby's bath water but you didn't pull up the stopper!

ME: Give me a break I DO HAVE A BRAIN TUMOR YOU KNOW!!!

I'll keep you posted on Edna and I.

BELOW IS THE FULL REPORT FROM MY MRI for those that like that sort of thing:

MRI OF THE BRAIN WITHOUT AND WITH CONTRAST

HISTORY: Mass in the posterior left lateral ventricle seen on a CT of the head from 2-12-10.

CREATININE LEVEL: Creatinine lab testing was performed at Medical Imaging Center of Ocala to establish the patient's estimated glomerular filtration rate (eGFR) with the results being:
Creatinine level 0.9, eGFR 73.

FINDINGS: Multiplanar, multipsequence MRI of the brain was performed without and after intravenous administration of 18 mL of Magnevist. As noted on the CT scan, there is a rounded mass in the choroid plexus in the occipital horn of the left lateral ventricle. This mass measures 1.6 x 1.5 cm in the axial plane and 1.6 cm in the cephalocaudal dimension. It contains a small amount of calcification. It demonstrates a significant amount of enhancement and has slightly increased signal on the T2-weighted images. It also has slightly increased signal on the diffusion weighted images. It does not appear to invade the surrounding brain parenchyma. No surrounding edema. There is no hydrocephalus. No additional masses are seen. The brainstem and cerebellum appear unremarkable. Incidentally noted, there is mucosal thickening in the right maxillary and ethmoid sinuses. The findings suggest sinusitis.

IMPRESSION: Partially calcified, enhancing mass is seen in the choroid plexus in the occipital horn of the left lateral ventricle. Diagnostic considerations would include a neoplastic process such as a choroid plexus papilloma or a meningioma. A nonneopastic process such as a hemangioma could have a similar appearance. Neurosurgical consultation is recommended.

HAPPY SIXTH BIRTHDAY MY GIRL.

2010-04-01T12:18:00.002-05:00

She is six today.

Six.

My Dearest Makily,

I am in awe of you. I think I always have been. I didn't know such strength and resilience could exist in such a small and frail little girl. Some children say how much their parents have made them who they are today. I have to say YOU have made ME who I AM today. As your mother I am supposed to teach you everything. Instead you have taught me more then I ever dreamed a child of six years and no words ever could. Watching you struggle and knowing your life is not what you deserve has been the hardest thing I have ever done. That being said YOU ARE the BEST thing that ever happened to me. I wouldn't take any of it back . I would do it all again. You are the light in a dark room, your laugh warms the coldest heart. I am so proud to be your mother. Thank you for choosing me.

I love you more then I could ever describe.

Happy Birthday my angel.

Love
Mommy

Makily's Youtube Channel:
http://www.youtube.com/user/patyrish

Makily's Life Video:
http://www.youtube.com/watch?v=RUoWKPJlw-U

Crying over Cupcakes.

2010-03-31T14:55:00.002-05:00

Yesterday Makily's teacher asked if I was bringing anything to the school special like ice cream or cupcakes for Makily's birthday.

I hadn't thought about it really and immediately felt like a crappy parent.

I didn't occur to me though since Makily does not eat.

I told her that I would and she gave me suggestions.

I picked Jakob up from school today and we went to Walmart. I picked out some mini cupcakes and headed over to the health and beauty section to get a few things. All the while I was fighting back tears.....over cupcakes.....

I was buying cupcakes for Makily's birthday. I bought them for her to share with her classmates in celebration.

Makily can't and likely won't ever eat a cupcake.

Insert anxiety attack in the middle of the deodorant aisle.

I could feel the tears welling in my eyes.

I hate MARCH.

I got back to the car, called Allen and cried my eyes out all the way to the school to pick Makily up. I wish I could just let go of the past and what's been lost and move on. Most of the time I think I have but birthdays almost kill me every year. I think with Jakob's adoption I had so much going on and was distracted so I didn't have time to think about it much. Now it's here and I can't avoid it.

Too much pain, too many memories and the reminder of how much has been lost.

I hate that her birthday does not signify a happy joyous event for me.

It ALWAYS takes me back to that horrifying night when she was born.

The sound of her first cries will never leave me. I think I knew then before I had even really seen her that something was wrong. She sounded more like a kitten then a newborn. I can still see her eyes wide, huge and blue........she was struggling to get air into her tiny lungs. I remember holding her in my arms the first time, watching her trachea completely sink into the back of her neck, she was pulling so hard to try to breathe. She would attempt to cry in between breaths and it was again, like a kitten. Her limp body, the blue around her lips, the extra skin on her face, the monitors beeping that she wasn't getting enough air.

The look on Allen's face.

Seeing everyone else's faces filled with worry, not just my family members, but the doctors and nurses.

There was no mistaken....something was very wrong.

Where was the healthy 8 lb baby girl I was supposed to be having?

My head was spinning while I desperately tried to act like I was happy in front of everyone. I mean what kind of mother would I be if I showed them all how sad I was right now?

I recall the nausea hitting me hard when I realized that something was very wrong with this baby in my arms. Inside I wanted to put her down and run out of there. I wanted to run away from this awful reality.

These images will never leave me.

I will carry them always.

They have made me who I am.

They have strengthened me.

Remembering it all though.....every year.....sure is hard.

I love you Makily.

Makily Update.

2010-03-29T16:40:00.007-05:00

I haven't updated on her in a bit so I figured I would.

She's had a runny nose since the New Year. We are on her third round of antibiotics and I *think* it may be clearing. We started out giving her Omnicef the first two rounds and she had RED poop for weeks, scared the school half to death. I admit the first time it happened on my watch it scared me too. I thought for sure she started her period (and just about shot myself in the face) but it's just a side effect of Omnicef turns your poop red. She had a double ear infection but luckily that cleared up on the first round of meds.

She's loving school as always. Kindergarten has been fun for her. She is walking with TONS OF HELP. I have to stand behind her, hold her arms bent at the waist and help her shift her weight. She takes steps, one foot after the other, she will not do this though until you stand her up and initiate it. She refuses to use a walker, does NOT want to hold onto it and when they try to get it to move with it, it's not very productive. I'm not sure why she is so against the walker other then she isn't thrilled with having to hold on, maybe a sensory thing still with her hands? She's lifting up her arms for the teacher to put her tray on the wheelchair now. She'll lay on her belly on a wedge for quite some time at school, for some reason she acts like I am killing her when I do it here at home though.

She had her first real eye doctor's appointment last week. It was a challenge but it went well. She kicked the nurse for putting drops in her eyes. I made sure to warn the doctor ahead of time that she's a kicker when she's mad and he should protect anything important to him! LOL. In the end he said her eyes/vision looks great. She's near sighted like me....in fact my and her vision is exactly the same. Crazy huh? No glasses are needed right now he said since she won't be driving any time soon (lol).

She's growing up fast and it's killing me. She's 35 lbs and getting taller by the minute. Her legs are so long and I'm not sure where she gets that from. We are all short in this family! I am sad to say that it's getting increasingly harder for me to carry her and lift her. She no longer fits in the double stroller. So I have been creative when I am out with the kids. Sometimes I will put her in the back of the cart and Jakob in the front. I just bought a larger jogging stroller so I hope that will last us for a while. We have the wheelchair but we leave that at the school. I miss the days of just being able to carry her indefinitely on my hip without a second thought. I don't want her to get bigger and grow up.

We are due for a follow up with Neuro, ENT and Cardiology. I am trying to get them all scheduled for the same day or maybe two days back to back so we won't have to drive back and forth and back and forth to Orlando.

It's hard to believe she will be six years old in just three days. So much has happened and I look back and think WOW what a whirlwind. I am so happy to know that we can just relax now. Medically speaking Makily is in a great place. While I know I can never TOTALLY let my guard down with her it's nice to be where we are with her. She's happy and healthy right now, has been for a while and I am so grateful.

We did some Spring cleaning over the weekend and I went through "the drawers". I had two of Makily's dresser drawers filled with mementos from her birth, hospitalizations, illnesses, clothes, pictures etc. I have avoided going through it and getting rid of some of the things I didn't need that were not important. I had tried in the past to go through it and my tears always stopped me. I got rid of a lot of things (a bag of pink jelly beans from six years ago, old envelopes, hospital bills and paper work).

I did happen upon the outfit I had purchased to bring her home from the hospital in. I saw it, held it and just cried. I remember buying it at Sears when I was about eight months pregnant. I was sad she couldn't wear it to come home in. In fact she didn't wear it until she was nearly nine months old. That's how small she was for so long. I guess that outfit represented the hopes, dreams and life I had before we knew anything was wrong. It brought back memories that I knew it would. This is a tough time of year for me. Her birthday is always hard. I can't help but remember how awful that first year was....especially the first six months.

Jakob's adoption has healed many hurts I have had over the years but there will ALWAYS be wounds that I carry.

I will always want more for Makily.

That will never go away.

I will always wonder what might have been for her.

I love you Makily, my angel, my teacher, my hero.....forever.

The LONG road to Jakob's adoption.

2010-03-21T21:06:00.003-05:00

I knew going into fostering it was going to be emotionally trying. More so because we were going into it DESPERATELY wanting to adopt.

I prepared myself.....I thought.

I had no idea how quickly I would fall in love with Jakob. It was literally the second I saw him. He smiled at me, they placed him in my arms and I was hooked.

In my heart he was already mine.

Does this make me a bad foster parent?

Probably.

Our license expires next month.

We are not re licensing.

While our family is complete and I BY NO MEANS want another child part of me is sad that we will not be welcoming any more children into our home for respite.

There are several reasons why.

First and foremost is that emotionally it is TOO HARD.

The emotional aspect is made worse by the fact that those paid to ensure that the child's best interests are met DO NOT CARE.

Unfortunately one of his social workers was HORRENDOUS. We were DRUG through hell and back at one point because of her. She lied often, even in court, straight to the judges face. There are many dirty people in the system. A few in particular nearly brought me to my knees. Having to sit in a court room the and listen to the person who is supposed to be looking out for the best interest of Jakob LIE through her teeth was infuriating.

When things were at their worst I wrote a letter. The letter was addressed to the head of the foster agency, the head of the agency the social worker worked for and everyone else involved in the case AND their higher ups. I detailed every mistake being made, lie that was told with dates and times. Explained why I was so afraid for Jakob. That if his parents TRULY and honestly had gotten it together I would have been able to support reunification. I explained that things were being covered up to the judge so they could reunify. The "counselor" (and I use that term very loosely) assigned to provide parenting, substance abuse and anger management to Jakob's father was a total and complete moron. At one staffing she stuttered through the entire thing and it was obvious she had no idea exactly WHAT she had been doing and what treatment she actually had provided. Finally she admitted she had not really done much substance abuse counseling with him because she felt he didn't need it. This was interesting to hear because SHE did his initial evaluation AND RECOMMENDED substance abuse treatment. She also eventually admitted that she had done MAYBE 6-8 sessions with him in a year......he kept missing or no showing. The lies were apparent and no one seemed to care. It was being brushed under the rug. Jakob's biological mother and father had pretty severe substance abuse problems. His father had no where to live half the time, his mother had left the state six months prior, the father was ordered drug testing and to AA and to stop drinking. He skirted every random drug test, said he went to AA but could never prove it and when he did take a drug test the social worker warned him THREE days ahead of time. When he DID go in for the test on a MONDAY MORNING all he was given was a breathalyzer. The social worker told the judge he had taken a RANDOM drug screen and passed. LIE. He admitted openly in court he was still drinking, and they STILL gave him an additional three months on his case plan....he had already had a year at that point.

My letter detailing everything was not well received. Jakob's social worker who I'll call DUMB ASS came to my house a week later. She told me her supervisor who I'll call THE BITCH DID NOT like my letter. She was angry. She had instructed DUMB ASS to do yet another search for relatives when she had already done three. She also advised her to have another relative appeal her home study denial (denial because she had an ex con living in her house AND prior child neglect charges). She told DUMB ASS she was angry and wanted Jakob taken from our home and did NOT want us to adopt him. I find it incredibly sad THE BITCH was going to try to move mountains to take Jakob from us and would rather him live with someone with prior child neglect charges. Did she not see that she was not only punishing me but that this would have SCARRED Jakob for life? She obviously could have cared less. This woman NEVER ONCE called me. Never once did she call to find out why I was so upset, to try and explain things or to ask for further documentation. She was angry because not only did I point out DUMB ASSES mistakes, I had pointed out the fact that she knew nothing about any of it to all of her colleagues that I had copied the email to. To this day I have never seen or spoken to her.

When this happened I nearly lost my mind. I finally just threw up my hands. I remember telling my mother, they want me to just roll over and take it so I guess at this point I have no other choice. So instead of fighting, I got quiet. I cried a lot. I put up with MORE and I wondered why. I wondered how I was going to live if they took him from me. What was I going to do if they DID reunify him with his father that WAS STILL drinking. God forbid he drive with Jakob in the back seat. The thought of it made me physically sick. What would happen if they lifted the denial on the relative. What if they sent him hundreds of miles away to live with a relative that saw him as nothing but a paycheck

The only person besides Allen and I that seemed to care and THAT SAW through the lies was the Guardian ad Litem and I am so grateful to her. I am not sure what would have happened had she not been involved and speaking up for Jakob. No one cared what we thought or how we felt. We were just the "foster parents".

Fate stepped in.

His father was arrested, released and left the state.

We have never seen him again.

Both his parents rights were terminated in July of 2009. I had to testify at the hearing. Neither of his parents attended but his father did participate via phone. I was incredibly nervous. I had not spoken to Jakob's father in six months. I had never testified in court and had no idea what I was going to be asked. Both my sisters came with me and while I was waiting to testify, my face went numb and so did my fingers. I looked at my sister and said I think I am having a stroke. I imagine my blood pressure was just incredibly high. I was asked simple questions about Jakob and so that was a relief. There were quite a few VERY sad moments during the hearing. One in particular was when the attorney asked the social worker if Jakob would know who either of his parents were if they walked into the room. While everyone in the court room knew he wouldn't, it was a sad thing to admit, especially knowing his biological father was on the phone.

Jakobs case was transferred to adoptions at the end of July 2009. His case worker came to the house once, then was fired a month or so later. We went without a case worker for a month or so and then the supervisor started coming to see Jakob. NOTHING was done to move towards finalizing his adoption UNTIL DECEMBER. The original agency's contract expired and was not renewed, it was transferred to a new agency and so I guess the old agency didn't feel the need to work on the adoption as they felt the new agency could deal with it. I went into the new office the DAY the new agency took over with Jakob in tow. I introduced myself to his case worker, explained we wanted things done and asked what else I could do to expedite the process. It took three and a half more months to finalize things....and that was ONLY because I faithfully called EVERY SINGLE MONDAY and said "how are things going, are we closer yet, have you turned in everything"? I was not impressed with this social worker either. Not once did she ever come through on dates she promised. She promised A LOT and delivered little. I finally told her to please STOP giving me dates because she has never followed through since I had known her. Harsh I know but we had been waiting for a long time and I wanted things DONE. She and I had some pretty tense words on more then one occasion.

Last Wednesday we went to the adoption attorney's house to sign some papers. We were originally told once the papers were filed we would get a court date in two weeks. We signed the papers and the attorney asked if we could do this "tomorrow". I said "do what"? He explained that he had two adoptions the next day at around 3 and would like to squeeze us in with them if the court would allow it. We said we would do whatever we needed to arrange our schedule. He called the court house in front of us and they agreed. WE WERE ELATED.

I am so grateful that it is all over with. I look at my kids and I melt. We didn't realize when we started trying to build our family EIGHT years ago that the road would be this long. We had no idea the toll it would take on us. We have fought for both of our kids for so long that it is nice to be able to just relax and just be a family.

We are so blessed.

More to come.

Ours Forever.

2010-03-21T15:14:00.003-05:00

It is with GREAT PRIDE that I introduce to you our our son

JAKOB ALLEN

We officially adopted him Wednesday March 17, 2010.

I cried through the entire adoption.

I will post the entire story this week about how it all happened and give more details, but I just wanted to let ALL my readers know, he is ours forever.

The fight is over and we are so relieved.

He is about two months old here, I don't know for sure because this was taken before he came to us.

The day he came to us, Four and a half months old

Day three with us.

Adoption Day

More pictures, video and details on EVERYTHING to come.

Stay with me my friends.

Soon my friends.....

2010-03-01T19:07:00.002-05:00

....the adoption *should* be final.

There is so much I want to say but I fear who may be reading this....just when I let my guard down, I'm shocked to hear of people that live here that read my blog. Just know Ocala is a SMALL town.

I LONG for the day I can come here and post AWESOME pictures OF MY SON and tell his entire story. I have kept so much from my blog and I hate that. I need to let it all out.

Be patient, my hope is that within the next two weeks, you will see my son's adorable face. You will get to hear his story and you will be amazed at how much he has already overcome.

Until then.........

I'm coming back.

2009-12-19T23:41:00.004-05:00

I am so ashamed that I have neglected my blog for so long.

I started facebooking and I think that may have been a reason for my blog block. That and so much of J's case is *almost* over that I honestly am afraid to even talk about it here for fear that someone will find this blog and something bad will happen.

Am I paranoid?

Most definitely.

I also have been in a weird place as far as Makily is concerned. I don't mean how much I love and adore the little booger. I mean the why's etc. I get to the point where I don't want to talk about all the sad crap and my blog HAS been my outlet so I have just stifled myself. I'm not sure why other then sometimes talking about it makes it more real maybe?

Not too much has changed since I last blogged. Like I said before J's case is FINALLY winding down but not without MUCH drama and headaches as always. My Christmas miracle would be that his adoption would be final by the end of this year. That is my DREAM. I sort of have a feeling it will be in January though and that makes me mad but yet again it's not something I can do anything about. Until his adoption is final I can't relax. I worry EVERY DAY that some family member will crawl out of the woodwork and say they want him. They tell me that's highly unlikely but I've heard that all before haven't I?

Makly is doing well and being as sweet as ever. They have been working with her on a tricycle at school and she seems to like the "regular" one as opposed to the adapted trike. The adapted one has all kinds of restraints and Makily hates being strapped into/onto anything. Add a helmet to that and she's M.A.D.! The regular tricycle is less restrictive and they said she giggles with it. Hoping to try and get her one like it for Christmas or soon after.

Today she's come down with a fever, nausea (with retching...oh joy), and diarrhea. I can't wait until the cold weather is over because it seems like we just can't keep her well during this time of year.

Much love blog family. Sorry I've been away but I promise, I'll be blogging more.

Oh my gash I'm blogging.

2009-11-09T09:44:00.002-05:00

So I'm updating!

YAY ME

First off Makily is doing great. We all had a horrible bout with the swine flu around here.

THAT SUCKED.

The baby did okay with it, Allen and I had mild symptoms but Makily struggled pretty hard. It was not pretty. Double ear infection, bronchitis, fever of 104.....and of course swine flu. She was down and out for about 2 weeks. Luckily she avoided being admitted and is doing well now.

J is growing like a weed and will be two in a little over a month. Where has the time gone. Still waiting on multiple things with the adoption. Having a hard time keeping a social worker. Not sure who his worker actually is right now. I'm hoping to light a fire this week and get things moving along QUICKLY. I really would LOVE to be done with this adoption before the end of the year.

Allen and I are doing fine. He's working his butt off as always. I'm still doing the OCALAMOM thing and staying at home with J. J may start early intervention four hours a day soon and I am not sure what I will do with myself then.

I took a Pole Fitness class on Saturday. I made an ass out of myself but it was a lot of fun and I am really sore. They also have other classes there so I will be going back and learning. I need to get myself back in shape and on top of things again.

I'll update later today with pics of HALLOWEEN. The kids were ADORABLE!

So how's Makily doing?

2009-09-24T00:07:00.007-05:00

I've had quite a few ask me that lately so I figured I would do an update.

We went to Neuro a week ago. My sister Deborah went with us.

The doctor and I discussed Makily's last abnormal EEG. He said she was just having "mis-fires that can lead to seizures but NOT seizures".
He said Makily DID NOT have to have a 48 hour video EEG. He will do another EEG in the office in three months. He did increase her medication by another half a pill and Makily has done fine with that.

She LOVES school and is doing VERY well with that. She has art twice a week with a "regular" kindergarten class. Carrie's son Logan is in there and he knows Makily well so that makes me smile.

Makily also has P.E. twice a week. I am proud to announce she is taking SWIM CLASS for P.E. I knew that once she got into kindy they would let her do swim class and so I made sure to get the forms filled out when school started. They said she does well in there and really enjoys the water.

This morning I woke up an hour late. I decided not to even rush around, I was going to be late no matter what. I got the kids ready and took Makily to school. She smiled when we drove up and started clapping when her teacher came in the room to get her. She LOVES school and it makes it so much easier to take her there seeing how happy she is being there. She has also made a new friend. A lady named Suzanne from ocalamom saw Makily's story and showed her life video to her daughter Kate. Kate is in the fifth grade and she fell in love with Makily. She just so happens to also go to Makily's school.

Kate asked her teacher and Makily's teacher if there was a way she could come in and play with Makily a few times a week. They all agreed and so Makily's friend Kate comes in and reads to her and plays with her in her classroom. HOW SWEET IS THAT? It just gives me a lump in my throat thinking about how my Makily has touched Kate.

We took the kids to a splash park last weekend and J LOVED it.

Makily not soo kean on it. It was too....well "splashy" for her taste. I did hold her under a mushroom fountain with me for a while. and she tolerated that. It was very relaxing and I love snuggling with my girl and having those "moments" where the whole world fades away and it's just her and I.

Later Allen asked me if it bothered me that people were looking at us. I told him I hadn't noticed, I have learned to force myself to not pay attention to that type of thing. It would have ruined our moment. Some times are harder then others. I like to think they were staring because they just thought she was so darn cute.

She ate several gerber cherry puffs happily yesterday. In between puffs she would sign the word EAT over and over again. Makily usually puts her hand to her mouth often but this seemed very deliberate so it made me very happy to see her doing this.

Chance Meetings, Small Towns.

2009-09-23T19:45:00.003-05:00

So I had a lady named Aimee on OCALAMOM contact me asking me questions about foster care.

A few days after we chatted she friended me on facebook. The next day I had a message from another nice lady named Jeannette. She said Aimee had shown her our story and that our kids had a lot in common.

I saw she had a blog and immediately read the whole thing...with tears streaming down my face.

Jeannette and her husband Steven have a BEAUTIFUL six month old baby boy named Caleb.

When Jeannette was seven months along the doctors diagnosed Caleb with Trisomy 18.
Babies with Trisomy 18 are usually miscarried or stillborn. Those that do make it usually don't survive past the age of one. Of course there are always that handful that prove the doctors wrong and outlive all the statistics.

Even still the doctors say that Caleb is terminal and he is at home on hospice with his loving family.

Strangely enough, his mom had mentioned Caleb had a therapy session. I asked her where and she said with Elon Bruner....this is Makily and Baby J's therapist. Her appt was right before ours and I got to meet Jeannette, her father and of course sweet Caleb yesterday. She even let me hold him and I felt so honored. I sensed she was nervous about it though and it reminded me to much of myself when Makily was that little. I was always nervous about people holding her that she wasn't used to. If she wasnt held a certain way she would cry and get upset. Her airway was such a mess that first year and crying always exasperated that. I just wanted to give her the biggest hug and tell her how much I understood her. I get her.

Caleb though is amazing. He is truly a sweet, perfect spirit like my Makily and it isn't very often I get to meet another child like this. His little cry reminded me so much of Makily in those early days. Holding him was much like holding her when she was that age. So tiny and frail, but it was so obvious she was in there and was a fighter from the very start.

Knowing how rare Emanuel Syndrome is and how rare Trisomy 18 is, I find it very strange that both of our families are living in the same small town. That we were connected in the way that we were and ended up having therapy on the same day at the same office...around the same time.

Wow.

I spoke with Jeanette briefly today and she said it was very good for her and her father to see Makily. That seeing my baby gave them hope.

She does not know it but that statement did things for my soul I can't describe.

According to medical science Makily should have died many times over the years...and she is still here. Still fighting, still stealing my heart every day.

I've been struggling with my faith lately. I can't say that I have resolved all of those issues but this chance meeting and connection means something. There is someone out there connecting us. Putting us in the places we are supposed to be at the right place and time. Sending us to those that need to be uplifted in only ways other families like mine can uplift them. I don't think Jeannette knows what our meeting did for me, what holding Caleb did for me either.

I know God is out there, I have to believe that, but I sure don't understand why he does a lot of the things he does.

It's not my place to question God....but I am ONLY human.

Please visit Caleb's blog today and offer his family words of love and encouragement.

We survived the first day of Kindergarten.

2009-08-24T14:49:00.004-05:00

Mommy had a hard time.

So my baby is now a big girl.

*sigh*

When I dropped her off this morning her old PRE-K teacher Mrs. Byrd came up to say hello. Makily got so excited when she saw her, it immediately made me cry.

What can I say, I was on the verge of tears all morning anyway.

I kissed and hugged her bye after getting her strapped into her wheelchair.

Then I got in the van and bawled all the way home.

It's hard to let go and let your baby grow up. That was killing me but it was hard to look at her in that damn wheelchair on her first day of kindergarten. Oh how I have dreamed of her running into her classroom excited and ready for her first day of school.

I HAVE DREAMED OF THAT....she hasn't.

Makily was happy as a clam this morning and so I am happy for her.

They said she had a great day and there were no problems at all.

She has her own little student planner.

I love this kid.

School starts tomorrow!

2009-08-23T21:24:00.002-05:00

So I am actually excited about it.

I went to Orientation at the school on Friday and I really liked Makily's teacher. The class will ONLY have five students INCLUDING Makily so I REALLY love that.

I have her outfit all picked out and her back pack ready.

I'm happy and sad about it all at the same time.

I just can't believe my baby is FIVE.

SHE'S FIVE.

How is it possible?

It seems like just yesterday I was holding her in my arms, distraught and wondering what the hell our futures were going to look like.

Here it is five years later and I don't think I could have guessed my life would be where it is today.

Who knows what the future holds?

I sure don't.

That being said, I am trying to turn over a new leaf.

I have found that I need structure.

How crazy, I am 32 years old and need someone else to make me structured?

I swear in some ways I really am 13 years old!

I need a schedule, I need to have somewhere to be, and a time to be there.

I NEED THAT.

So I am planning on working out again and tanning. I will drop Makily off, drop J off at Granny's (as long as she'll let me lol...I'm sure she will) and then I am hitting the gym. I always feel better when I work out. ALWAYS.

I am trying to force myself to think positively about certain things again. Admittedly in some cases it's harder then others but continuing to stomp my feet and say how unfair it is, is just making me sad. I'm tired of being sad.

Will post pics in the morning of my baby's first day of kindergarten.

That sentence gave me a lump in my throat. *sigh*

"Your Not Shaken"

2009-08-20T23:18:00.004-05:00

As most of you know, I'm really into music. I get great joy out of hearing a song that I relate to in one way or another.

My friend Chontee send me this song and I listened to it and of course bawled my head off.

It really describes where I'm at right now, although I can't say that I have the same "resolve" right now as the song writer seems to.

I'm hoping I'll get there one day.

Your Not Shaken
Paul Stacey

Thanks for sending this Chontee.

Busy Day and a couple of pics.

2009-08-20T22:32:00.003-05:00

Today Makily had her five year well check.

How is it that she is FIVE?

She is 33 lbs. 11 oz. (and my back swears she is 43 lbs LOL)

She is 37 inches tall.

The tube in her LEFT ear was just kind of sitting in the back of the canal and NOT in her ear so they lavaged that out. NOT FUN. It didn't take too long. I am putting drops in that ear though to prevent an infection.

She got three shots, she was NOT pleased. She cried and I admit I did get a little teary.

She starts kindergarten MONDAY.

WOW.

I got all 800 forms I needed from Dr. Pierre for her medications and her shot record.

J was a maniac during the visit, he was in and out of the cabinets, under the table, trying to play in the trash, opening the drawers...then SCREAMING....this was TONS of fun. Makily now gets upset when J cries. So when he is pitching a tantrum and being a brat....then Makily cries. So I have two kids screaming.....lovely!

I complain but really I wouldn't have it any other way. While my life is hard sometimes, I wouldn't trade either of the little turds. They truly are my heart.

Then we went to Walmart....I HAD to get diapers. Of course we had the stroller dilemma. I needed two boxes of diapers. I crammed one in the basket of the stroller (no easy feat mind you) and then put the other one on top of the hood part.

I get to the 20 items or less lane and OF COURSE there is a lady with about 100 items checking out. She pays with a card for her items. Then remembers she needs cigarettes and buys a carton and pays with a check.

EVERY.

TIME.

WHY DOES THIS HAPPEN TO ME!?

It's like I just prepare myself to get behind these people.
As I was putting all my stuff up on the belt, I look down and J has TWO PACKS of Hanes thong ladies underwear in his lap...clutching them for dear life. I have no idea when he picked these up but I promptly snatched them out of his hands.

WHY WOMEN'S UNDERWEAR?

It seriously reminded me of my dirty panties post....and THIS post.

So I finally check out. I put the two small bags in the basket then I cram the ONE box of diapers into the basket and balance the other on top of the hood of the stroller again. I get to the exit and would you believe the lady at the door asked to see my receipt. I looked at her....looked at the CRAZY TRAIN that is the double stroller, diapers and my children in front of me and said "Your kidding right"? She says no...and stands there waiting to see my receipt.

SIGH

I pull the damn box of diapers out of the basket, pull the two bags out from under the diapers....then I proceed to dump the contents of said bags onto the floor in front of her in search of my IMPORTANT receipt...because you know me, I STEAL HUGE BOXES OF DIAPERS FROM WALMART. I HAVE TIME FOR THAT. I find the receipt hand it to her, she looks at it for literally 1.2 seconds, slashes her important yellow line on it, hands it to me and then turns her back to me.

REALLY?!

REALLY?

SERIOUSLY?!

UGH.

I put all my crap back in the stroller and was tempted to just kick the damn boxes of diapers to the car. I figured I would make that more of a spectacle then I already was so I crammed them back into the stroller the best I could.

By the time I got to the van I was sweating. I throw everything in the van, put Makily in and then strap J in. I go back to the stroller to fold it down and throw IT in the back when a lady walks up and says WOW you sure have your hands full, it takes forever just to get in the car,I don't know if I'd want to go anywhere.

SIGH

I just smiled and said OH YEAH, it's a chore!

The thing is staying home is what brought me down so low so I AM TRYING, really hard to stop doing that. It may be a pain but I need to do it for my own sanity.

***Thanks for all the comments on my last post. They did help. I am still in a weird place as far as wondering why and God is concerned but I will get through it. ***

Where's my head?

2009-08-16T21:45:00.002-05:00

It's in weird places.

So on top of all the other crap I mentioned before about being depressed and all, I am struggling with another issue.

Where is God?

There I said it.

I came out and said that I PATRICIA CALDWELL, woman that everyone thinks has this perfect faith is having major spiritual problems.

I am questioning God like I never have before in my life. Even more so then after Makily was born. I've been doing that for quite a while now....just haven't had the nerve to admit it.

For a long time I kept telling myself all the problems we have had was for a reason.

God was working, he was doing it for the greater good.

Well I am T-I-R-E-D.

I think I have seen too much.

I can't say I don't believe in God anymore, in fact the thought of just uttering those words makes me feel very odd. I just don't think I believe some things I always believed before Makily was born.

Where was God when Makily lay suffering in Shands when she was six months old?

Where was he when I was begging and pleading for the doctors to help her?

Where was God when I nearly had a nervous break down after being in the hospital with her for nearly five weeks? I vividly remember laying in the floor of the shower of Makily's hospital room crying so hard I vomited. I remember feeling catatonic afterwards.

Where was God on the night Makily had her seizure and I was here with her alone and horrified? I can't say I felt his presence that night or the two nights thereafter that she had to be put in a drug induced coma to stop the seizing.

More importantly where has God been for the past five years that I have been praying and begging him to heal Makily? There are actually people that believe if you just pray enough...or the right way (and what is the right way?) that God will answer your prayers. Well I am sure I have prayed many different ways....and my prayers seem to have fallen on deaf ears. I don't even expect her to be "normal", I've just prayed for simple things like Makily to walk, to talk or....gasp....to eat by mouth.

What I am saying here is that I am not praying for God to give us a million dollars.

I am praying for my baby's life to be fuller then it is.

What's sad....is that I'm not the only one. Our family is not the only family that I have witnessed go through some pretty HORRIBLE times.

Look at Andrea (and i hope you don't mind me calling you out here honey, I love you dearly, your life has deeply touched mine). She had sweet Luke with CMS, then has beautiful Hannah whom avoids having CMS but instead has Downs.

REALLY.....REALLY GOD? SERIOUSLY?

I have been following THIS FAMILY.

They had one baby....little Gabe who passed in-utero. Then she joyfully gave birth to little Jonah. Jonah has EB...a condition which basically makes his skin just fall off, and create sores all over his body. The things HE and his family have to endure are RIDICULOUS. They are handling it amazingly well. I can't help but look at Jonah's angel face. He is smiling, his GORGEOUS blue eyes gleaming, with sores all over him. I wonder WHY GOD....WHY!!!

Right now the Osero family also has been on my mind. Danny has been in patient for SEVEN...YES SEVEN WEEKS. One thing after another, after another, after another. His mother reminds me of me and her stay has been MUCH LIKE the one I had with Makily at six months. She's begging for certain things, the doctors ignore, her child suffers....then in the end they do what she said from the get go. I'd be a lunatic....I was.

Why should ANY child suffer?

I think I have seen too much.

When you have watched your child suffer time and time again, it changes you.

When you sit back and realize that no matter how hard you try, how much you do there are just certain things that aren't ever going to get better. That your child will just have to deal with it....and you will have to sit by and watch it...helpless.

I went to Walmart last week to school shop, how depressing it was to stand in the back to school aisle and KNOW that there is NOTHING there Makily can use. I decided to go buy her new clothes instead, I regretted that decision quickly when I found myself standing in front of all the leotards, tutu's and tights. More things Makily won't ever need, things she won't get to do. I'll never get to sit at a recital watching her dance off beat and clumsily in a tutu...and frankly THAT PISSES ME OFF.

I'll say it again, I'm not asking to win the lottery, or be a super star....I just want the simple things for my baby.

I am grateful for one thing though, I am grateful that Makily has no idea she is different. I am happy that she only knows our love for her and LOVES US back. If she knew she was different, if she understood the jokes that will be made about her as she gets older.......I might not be able to bear it.

So there it is, the hard, ugly truth.

I'm not sure where to go from here.

These wounds, they will not heal.

2009-07-23T07:45:00.003-05:00

I'm a little crazy, I've just decided that.

I'm not blogging like I should...I know.

I decided I needed to today.

I think I've realized that Makily being age five is what has gotten to me lately.

Five year olds arent babies anymore. They go to kindergarden, they cut, paste, color, glue, dance, sing, jump, yell and talk your ear off. They are obnoxious and ask a million questions, have embarrasing tantrums in Walmart and beg for candy in the candy aisle.

Makily does none of that with the exception of going to kindergarden.

I had hoped she'd be walking by five...she's not.

I had hoped she'd at least be eating some by mouth, we've pretty much given up on that.

I had hoped she at least have two words Mamma and Daddy. She doesn't.

This has all been eating away at me and I don't want to talk about it. I've pushed it back, ignored it, didnt want to deal with it because really it's been five freaking years. I need to get over it, but I know....likely, I never will. No one wants to hear me whine about the same shit over and over again. I don't even want to hear me whine about it anymore.

So I guess I have just retreated into myself which in turn cuts everyone else off.

Is this healthy? NO.

Do I know how to stop doing it? NO.

Do I want to stop? I know I need to but right now I just lack the motivation.

It's incredibly difficult to go anywhere right now when Allen isn't home. J is walking but I don't trust the maniac to just walk and hold my hand. Taking TWO kids to the store both of which can't walk on their own is a chore in and of itself. Makily is getting way too big for the double stroller. I can't use the wheelchair when we go out because then what am I going to do with J? Can't carry him and push the chair. I'm sure being cooped up in the house is not making things any easier right now either.

So there it is.

I talked to my mom about it just now. I think I need to change my medication. I've been on Effexor for five years now and I'm thinking I'm somehow immuned to it or it's just not working. I don't want to need medication and so the fact that I obviously do....well it frustrates me.

I am listening to a lot of angry music. Linkin Park mostly. They have a great way with putting frustration into a song I must say. If your ever angry/sad/mad....I highly suggest listening to them.

I'll leave you with the lyrics and video to a song that I can really relate to. When Makily was little I listened to it over and over. I actually relate to it more now then I did back then. It describes EXACTLY how I am feeling right now.

I want out of this funk.

CRAWLING
LINKIN PARK

Crawling in my skin
These wounds, they will not heal
Fear is how I fall
Confusing what is real

There's something inside me that pulls beneath the surface
Consuming, confusing
This lack of self control I fear is never ending
Controlling

I can't seem
To find myself again
My walls are closing in
(Without a sense of confidence I�m convinced that there�s just too much pressure to take)
I've felt this way before
So insecure

Chorus

Discomfort, endlessly has pulled itself upon me
Distracting, reacting
Against my will I stand beside my own reflection
It's haunting how I can't seem...

To find myself again
My walls are closing in
(Without a sense of confidence I�m convinced that there�s just too much pressure to take)
I've felt this way before
So insecure

Chorus (Repeat until end)

There's something inside me that pulls beneath the surface
Consuming, confusing
This lack of self control I fear is never ending
Controlling (Whispered during chorus)

Linkin Park - Crawling

AM I A HUGE RAY OF SUNSHINE TODAY OR WHAT FOLKS?

Big Day In Court.

2009-07-06T07:14:00.002-05:00

Been waiting for this day for 14 months.

I'm a nervous wreck.

Don't know what will happen.

Hoping all goes well, but I really feel like I am walking into the total unknown here.

Was told about 10 minutes ago I'm on a witness list. This is news to me.

Hoping I'm just on the list and I am not called.

Will update later today.

Think and pray for us.

Father's Day at the Beach.

2009-07-01T11:43:00.002-05:00

We went to the beach in Crystal River.

The beach is a great place to get awesome pictures don't ya think?

NOTE: KEEP SCROLLING DOWN, THIS IS THE 3RD ENTRY IN THE LAST TWO DAYS...I AM SO TRYING TO CATCH UP!

I'm back Bloggies and trying to catch up.

2009-07-01T11:15:00.003-05:00

Bear with me ya'll. I'm really trying to get myself back in order.

Figured I'd play a little catch up here with random pics of what's been going on around our parts (that sounded very country of me).

We went to a tattoo party on Sunday. It was a little different but we had a good time. Everyone brought their kids and they played, Makily watched TV and did really well hanging with the other kids. I put her in one of the bedrooms while she ate, but after that she watched TV and hung with them. She did great. J was the maniac he always is. He loves kids, and had a big time.

Me waiting for the guy to start....NOTICE THE SMILE!

During....not so smiley anymore!

The finished product....sorry for the oogy looking picture of it, still have ink and stuff smeared. It's healing now so I will get better pics eventually. I think later I may add legs to her and little swirlies above and below to make it look like she is walking up my toe.

YES IT HURT, luckily it only took like 15 minutes. I would never get a huge tattoo again. I have a big fairy on the small of my back and I wouldnt do that again.

I don't have an actual pic of mine but here is the pic I used to have it done.

That was my first one, it took forever. Too painful for too long.

J is doing all kinds of new things. Climbing is his new skill, I AM NOT A FAN. He will push a chair over to the sink, climb up on it and then try to do dishes. He also enjoys mopping and sweeping. I joke that he is going to be a janitor one day. He will find a broom or mop ANYWHERE we go and use it. He enjoys cleaning. He is pretty much finger feeding himself and will eat nearly anything you put in front of him. He loves stuffed animals and will pick them up and hug them to himself. Of course he is obsessed with all things he's not allowed to play with. The phone, TV remote, camera, keys etc. He's doing well in speech and is babbling MUCH more. Just like Makily HE LOVES MUSIC. He will stop in his tracks when he hears it and DANCE. IT IS SO CUTE AND HILARIOUS.

Makes me laugh every time.

Will blog more later....keep checking....trying to catch up guys!

The crappy blogger of the month award goes to......

2009-06-15T13:54:00.006-05:00

*drum roll please*

ME!

I suck bloggies, really I do.

I am in a funk. A writing/blogging life in general funk.

I have my own issues I am dealing with....nothing new really, same crap different day you know? I can't say I'm depressed about anything really, I'm not......I guess I'm just withdrawn? I have been having that whole "Who am I, how is this my life and what am I doing" crisis. Sounds totally cliche and it is but I'm so there people. I'm not even really unhappy, just I don't know what you call this.......BLA?

I don't know if I am making any sense or not.

If you have been calling or emailing, it's really not you IT'S TOTALLY ME. I am trying to force myself out of this "funk" but I am hard headed as you know. I seriously checked my email this morning and had 1000 emails in my inbox....ONE THOUSAND. That is ridiculous. Oh and btw my cell phone is GONE....I lost it days ago and have yet to find it. I'm going crazy without it.

Anyway as I type this I have Makily vid uploading, and that will be posted at the end of this thread.

The long awaited Pre-K Graduation video:

Make an on-line slide show at www.OneTrueMedia.com

**please forgive the earlier DIRTY word, it REALLLY and truly was a typo that I am mortified about at this very moment!!!**

I'm ALIVE, sorry bloggies....

2009-06-02T08:49:00.001-05:00

i've neglected my blog.

Hanging head in shame!

We have had a busy couple of weeks. Hanging out with friends, the kids were both a little under the weather, therapy appts for them both, I have a cold and a million other goings on!

I will blog Makily's pre-k graduation later today. Right now I am playing catch up with all kinds of other stuff.

Be back soon with pics and vid.

STAY TUNED!

WARNING: THIS POST CONTAINS GRAPHIC PHOTOS.

2009-05-21T20:03:00.002-05:00

VIEWER DISCRETION IS ADVISED.

**Seriously this entire post is gross so if you are easily offended OR have a weak stomach....skip it*****

Okay you have all been given fair warning.

I was in a mad rush to get ready to be at my doctors appt by 11:00. I am always in a mad rush to get ready.

Story of my life.

ANYWAY

J was taking an early nap (because I knew if he didn't I would pay for it at the doctors office). I had just enough time to get ready and be to my appt on time.

I got out of the shower and heard J talking in his room. I decided I would go get him up real quick and then blow dry my hair.

Well when I opened his bedroom door.....this is the horror I found.

(cue psycho music....reet, reet, reet, reet)

Have look INSIDE his crib:

Gotta love baby turd hand prints:

J was covered in poop from his head to his toes.

He even had crap plastered BETWEEN his eyes.

SERIOUSLY.

I had no time to take his picture. I quickly picked him up (while holding him away from my body....think Three Men and a Baby), and went straight to the bathroom. I left the drain open and just ran the water. He thought this was a wonderful game and squealed in delight. I blew dry my hair while he soaked the turds off of his body.

sigh

I have been saying for the longest time that I wanted to do a mural and a theme in his room. I ha vent for fear they will take him and then it won't be his room anymore.

I guess J was tired of waiting for his mural.

He made his own.

Out of turds.

I will say that I am rather impressed.....to me it looks like a bat....maybe even a bald eagle? How Patriotic of him?

Look at the wing span on that!

Just when I thought I had all the solid turds cleaned up...I pulled the crib out from the wall to clean it and found this....Oh Joy I thought...another prize!

I like to call this picture

Sticky Wall Turd

Needless to say I spent an hour bleaching the walls, his crib, the sheets and cleaning up turds. I shampooed the carpets too.

I will be saving these photos to use as black mail when little J is older and he brings a girlfriend over. I may have been the turd cleaner today but revenge is sweet!

Here's the after. Hopefully it will stay this way....if I wake up to another turd mural in the morning.....I may cry.

Trish honey, YOU TOTALLY called this last week didnt you!?

I HATE APRIA MORE TODAY THAN I DID YESTERDAY.

2009-05-19T19:12:00.002-05:00

Dear Apria,

This afternoon after a long day of appointments and running around with my kids, I was relieved to see a small box from your company on my doorstep. I was thankful that FINALLY after ALL YOU PUT ME THROUGH in the last couple of weeks, I had the extension tubes I so DESPERATELY needed in order to FEED MY CHILD!!! I was almost joyful about it.

Well my relief and joy was short lived.

I opened the package and quickly realized something very ANNOYING.

I could feel my blood pressure go through the roof.

You sent the WRONG EXTENSIONS.

YOU SENT THE WRONG EXTENSIONS...YES THE WRONG ONES.

THESE DO NOT FIT YOU SORRY EXCUSE FOR A HUMAN BEING.

What really BURNS me up is that you sent the VERY extensions that I told you SEVERAL times WERE NOT THE CORRECT ONES.

Please know that I will be calling your office in the morning...and I feel incredibly sorry for the poor chump that gets my call.

Sincerely

Trish
Psycho Mommy on a Mission for AMT feeding pump extensions.

p.s. I hate you all.

I had a couple of questions from readers I figured I would answer here:

1. Maklily's AMT button is an 18fr 1.7 cm.

2. IT IS NOT one of the AMT models that we can use Mic-Key extensions with. I was hopeful it was, but alas it is not. I have tried....believe me. The part that hooks into her button is too fat and seems shorter.

3. I had not heard of the AMT clamp but I am on a mission to find one and get one!

4. The exact name of her button as written on the box is: AMT Mini Balloon Button.

What I ended up doing is yanking off the med port/feed port peice off one of the new extensions (which I wasnt sure you could do...but now know I can). Then I yanked off the med port/feed port off the old extension. That really was the part that was making the tubing slide out because it's been used to much it's stretched out. I put the new piece on the old tube and it's working for now.

I am the Queen of "Make it Work".

I feel like Tim Gunn (I so love him by the way).

It's sad I have to rig my kid's feeding tube with parts and pieces to feed her.

Such is life.

I HATE APRIA!!

2009-05-18T08:15:00.004-05:00

I HATE THEM!

HATE THEM!

Makily's got this new AMT button. When we got it, it came with ONE bolus extension (for feeding quickly with a syringe...which Makily can't tolerate) and ONE pump feeding extension.

I was due to order her monthly supplies in a week or two and figured I would order more extensions then.

Well in TRUE MAKILY FASHION the ONE extension we had POPPED A FREAKING HOLE. NEVER has this EVER happened to us. Holes in the balloon on her button yes BUT NEVER on/in the extension tubing. In all honestly I was just glad the button didn't go bad!

So I call Apria in a total panic telling them that Makily can't eat without this extension and I need one overnighted to me. I was desperately trying to think of ways I could feed her in the meantime from taping over the hole on the extension we had or just trying to make the bolus extension work with the pump (which ultimately is what we did overnight).

I tell the woman MY CHILD CAN'T EAT WITHOUT THIS TUBE.....she does not eat by mouth.

Do you know her reply?

Brace yourself.......

"Sorry, Ma'am it's a special order item and it will take two weeks to get it to you".

WHAT?!

I reiterate AGAIN that Makily can't eat without the tube, SHE WILL SHRIVEL UP AND DIE OF STARVATION waiting two weeks for them to ship the freaking thing.

Then she had the nerve (and stupidity I might add) to actually tell me that since it's a special order item.....they don't even make them until you order it, that's why it takes two weeks.

I LAUGHED...VERY LOUDLY IN HER EAR.

I went on to tell her this was unacceptable. She had to get me the stupid tube somehow, some way.

I didn't care how.

She says "well I don't do special orders"

GIVE ME TO THE PERSON WHO DOES YOU FREAKING MORON!!!!!!!!

She transfers me to someone equally as heartless and idiotic.

I go through the entire story with the new asshole and do you know what she has the nerve to say?

"We don't even have an order for that tube ma'am, I can't even try to order it without an order from the doctor".

At this point I lost my cool (okay I am lying, I lost it when the first idiot told me two weeks). I said "Look I don't care what you may have to do, what extra step you have to take but I NEED THIS TUBE and NOT two weeks from now...I NEED IT YESTERDAY LADY"!

THINK OUTSIDE THE BOX PEOPLE.....THINK OUTSIDE THE BOX...WHAT PART OF MY KID CAN'T EAT WITHOUT THIS TUBE DO YOU NOT UNDERSTAND?!?!!!?

Am I speaking Greek or something!?!

THROW ME A FREAKING BONE!!

So I ask her what she suggests I do. What should I tell Makily when I can't feed her for the next two weeks? Sorry Makily....the lady on the phone couldn't send us your tube because she didn't have a piece of paper and it was a special order?

I asked her what she would do in my situation.....I say "If it was your baby, I am sure you would find a way to get the tube....and NOT in TWO WEEKS"!

YOU KNOW WHAT SHE SAYS?

"Ma'am, I would follow the same procedures I am following right now with you!"

I laughed and said "Well I feel really sorry for your kids!!!!!"

She says she will "see what she can do".

That's the last I heard from her.

When I hung up I had to run to pick Makily up from school and then take her to therapy. I wasn't sure what I was going to do.

I called Allen and asked him to google "AMT" (the button manufacturer).

He did, then he called them and guess what?

HE GOT TWO OF THE EXTENSION TUBES OVERNIGHTED TO US FOR $30.

It took him all of 10 minutes.

SHAME ON YOU APRIA......SHAME ON YOU!!!!!!

I wasn't going to call them and tell them how incompetent they are because it just puts me in a really bad mood and nothing ever changes with them.

Three days later I get a call from Apria. Verifying that I ordered a new AMT button for Makily.

sigh

NO YOU IDIOT, I DIDN'T ORDER THE BUTTON......I ORDERED THE EXTENSION SETS...THE FREAKING EXTENSION SETS!!!!!!

I swear I am going to have high blood pressure and gray hair.

So I tell that lady what a moron she is (and honestly she just was thrown into it and had no clue what was going on....I feel bad about going off on her now, give me a break, she called me while I was in a cramped dressing room with BOTH kids in the double stroller SCREAMING). I go through the whole story AGAIN which just pisses me off that I have to waste my breath for the 900th time with these idiots. She tells me she will "check it out" and call me back.

That was six days ago.

sigh

Fast forward to this weekend. Makily's extension tube kept coming unattached from the pump. Meaning it fed the bed, her car seat or her diaper. The extensions are really only made to use for a week then thrown out. We have had to use these more because it's all we have right now. This morning we get her up for school and she is laying in a puddle of formula....fed the DAMN BED again. THANK GOD for her Sleep Safe Mattress....it just wipes right off. (Shameless plug there :-)

We get her ready for school and start a feed on the pump. Allen drives her to school and THE DARN THING UNHOOKED FROM HER TUBE AGAIN!!!! Fed the car seat, she was drenched and a mess by the time Allen got her to school, so he turned around and brought her right back home.

I call Apria to find out WHERE ARE THE EXTENSION tubes that I ordered.

I go through the entire story with the supervisor (I asked for her off the bat because I did not want to go through the entire story more than once). She does not apologize for the stupidity....she puts me on hold to check on it. Comes back and says that our local branch has them and will be sending them to us today. I ask her why I had the issue when I called about the tubes to begin with. Does she not see that it was a bit ludicrous that I got NO HELP and left to figure things out on my own? I went on to tell her it took us 10 minutes to get the tubes overnighted from the manufacturer. That it makes no sense why they couldn't have done the same thing.

Her reply?

"We didn't have the order".

SIGH

I give.

Here's my problem....I get they didn't have the order.....I get it. I get that it was special order and they don't always do that.

WHAT I DON'T GET IS THE FACT THEY DIDN'T CARE/UNDERSTAND THAT MY KID COULD NOT EAT WITHOUT IT AND TRY TO FIGURE OUT A WAY TO GET IT TO ME AND ASAP!!!!

It takes minutes to get the order. Dr. Pierre is usually always good, especially in situations like this. Even if they didn't have the order in their hands at the moment they shipped the extension tube.....really who was going to know that? Who would have found out? A five year old kid COULD NOT EAT without this tube and so I think it was worth the minimal risk of sending us a FEEDING TUBE and getting the order a day later.

We got the button with no order?

I told the lady on the phone that I pray she never has a child or a family member in the situation my kid is in. I told her that if that ever did happen to her I pray that someone would help them more then they had helped us.

END RANT.

Never a Dull Moment.

2009-05-16T09:04:00.002-05:00

We have so much fun around here lately.

Let's see.........where to start?

Makily has developed diarrhea. Her poop is no longer normal poo. It's watery and yesterday had little white blobs in it? I know too much information right? My only guess is that it's from the increase in Topomax...which by the way we still have not gone ALL the way up to the dose they want her on. I pretty much can guarantee though that if I call neuro about it they will say it's not from the Topomax because my understanding is that diarrhea is NOT a side effect. I am convinced that it IS the Topomax though because well that is the ONLY thing that has changed.

I don't really want to try and change her seizure meds right now since they are suspicious of new seizure activity. I would hate to wean her off one to wean her up to another and chance her having a massive seizure. I sort of would like her off the Topomax and on something else (because it could be causing the infrequent urinary retention) but again I don't want to risk a seizure at least until she's had the 24 hour EEG and it comes back normal (assuming it comes back normal ).

I say all that to say this.....I really don't think she is having any new seizure activity. I know I sound lame and maybe in denial a little since the EEG DID indicate her brain is mis firing, she is sleepier lately and she had that weird episode at school. I really don't know. I start to think about going back to the original Topomax dose because I really DON'T believe she is having an issue but on the other hand if she had a seizure after I did that I would NEVER forgive myself.

BANG HEAD HERE!

If I sound non chalant about all this, I guess it's because I kind of am just getting used to this crap. I almost don't even panic anymore. I have noticed that I have changed A LOT in that respect. I am not surprised that all this is going on. I am not making myself totally sick over it because I really can't do anything about it except what I am already doing. I find myself shaking my head saying "yea of course there is all kinds of new weird crap going on with Makily.....of course.....this is just normal for us". We have a stretch of "everything is fine" and then weird stuff happens with this kid. I just hate it for her, because I feel like she has enough to deal with just on a daily basis and so it makes me a little angry that every now and then she has more things added to the pile.

sigh

In other news Allen has been tentatively diagnosed with Diabetes.

sigh

No, I am not kidding.

We just recently established with a new doctor. Allen went in for blood work early last week. Doctor says his fasting blood sugar was high....it wasn't horribly high so I didn't panic at first but his HGB A1C was elevated also and well that basically confirms Diabetes.

So Monday he goes in for a Glucose Tolerance Test and that will give us a gauge of how severe it is or is not (I am thinking it's not that bad). My hope is that the GTT comes back borderline and that we can try to get things under control with diet and excersize. I would rather HE NOT be put on medications. The doctor agreed with that and said Allen is too young for him to commit to medications. Allen is a truck driver so he eats what he can when he can. He also has a horrible addiction to Mountain Dew.....obviously NOT good for someone who is a suspected Diabetic. So we have stopped Mountain Dew altogether........Allen is not thrilled but he knows he has to be healthy for the rest of us as well as himself.

All is well.

2009-05-14T17:09:00.003-05:00

Makily is doing okay with the new med change. We are only doing 1.5 pills in the morning and two at night. She's on the apnea monitor at night and so if she has any episodes it will go off.

Mrs. Leslie at school has told me on several occasions here and there that Makily went nearly all day without a wet diaper. I noticed one day last week that she had only peed minimally and then the next day Mrs. Leslie said she hadn't peed that day at all. We have not decreased the amount she is eating at all. I can't give her extra free water because she can't tolerate the extra volume in her stomach. She starts retching. So I called Dr. Pierre and we have a consult with Nephrology for June. Emanuel Syndrome children can have kidney problems so we figured we would be safe then sorry. She had a renal ultrasound when she was in the NICU and they said it was okay but I really don't trust ANYTHING that Shands told me back then. We'll see.

Maybe she is just learning to hold her urine. I don't know.

Don't know what's gioing on with Doodles...

2009-05-08T21:20:00.003-05:00

...but she's keeping us on our toes.

I took her to school this morning and let Mrs. Byrd know that we had increased her meds from 1.5 pills twice a day to two pills twice a day. I gave her the increased dose last night before bed. Then she got two pills this morning at about 6:45 am.

Well I got a call from the school at 9:00 saying Makily was acting different and was asleep. I thought the nurse was a little crazy because it didn't make much sense for her to be asleep but acting funny? I asked if she was breathing okay and she said yes and then asked me to come pick her up.

I got to the school at 9:30 and she was asleep in her chair. I didn't think anything was any different at first. Then the nurse held both Makily's eyelids open and she never flinched. She didn't pull away, her eyeballs never moved. The nurse shined a light in both eyes and Makily continued to just lay there. Her pupils were TINY but were slowly reacting to the light. She held her eyelids open for at least 20 seconds. Makily does not like ANYTHING on her head or face.......you can't even wipe her nose or change her bib without her getting agitated and kicked or whined at....even if she is asleep. So the fact that the nurse held her eyelids open and shined a light in there for that period of time with no reaction scared me. Her heart dipped down into the forties during this "episode".

I picked her up out of the chair and did everything I knew to wake her and she just laid there. I decided to stay at the school until she woke up. My fear was that she was about to have a seizure and I didn't want her to do it in the car while I was driving. Ten minutes later she sat up, opened her eyes wide, smiled at me then clapped her hands like nothing ever happened. She acted TOTALLY normal the rest of the day....happily, sweet and giggly.

VERY WEIRD.

She was in that state for nearly an hour. The nurse thinks it was a seizure. I immediately assumed it was from the medication increase. I called Neuro and spoke with the Nurse Practitioner. She blamed the med increase. I told her that the doctor told me yesterday that the increase would not cause any drowsiness or side effects which is why I was concerned. She told me that Makily's body had to adjust to the new dose and that she is going to be sleepy. I reiterated what the doctor told me the day before and she told me that if it made me more comfortable I could back off to 1.5 pills in the morning and two at night....then slowly wean her up from there. I again told her the doctor told me that Topomax will not cause those issues and she said to hold while she spoke with him.

sigh

She came back and told me that he does not think the increase in Topomax had anything to do with the episode this morning. That it does not cause drowsiness but that if I was more comfortable I could try the dosing the Nurse Practitioner had suggested.

So I kind of feel like they don't believe it was from the meds, they don't know what it was and so they are just offering me this solution.

I don't know what to think.

Tonight I gave her two pills and I will just do 1.5 in the morning and go from there. I kind of feel like they are leaving it up to Allen and I to decide what to do and I just don't know.

She's back on the apnea monitor again.

I'm too paranoid now.

I can never fully relax with this kid....never.

2009-05-07T15:57:00.002-05:00

I don't have a bunch of time but wanted to update real quick.

Monday Makily had an EEG w/Neuro. She's had one every six months since the seizure.

The last visit with the Neuro he explained that she was on a very low dose of meds, had good EEG's and CT's since the seizure and he wanted one more good EEG. As long as that was okay he suggested we start weaning the meds.

Well it wasn't okay.

sigh

I had a message from the doctor himself on my phone yesterday.

I knew it couldn't be good because all her other EEG's I just got a thing in the mail saying "normal EEG".

I called back today and spoke to the doctor. He said that Makily's EEG was abnormal. They didn't see a seizure but her brain is mis-firing. He asked if we had noticed a difference in Makily lately and I said she has been sleepier. He said those mis-fires could cause seizures..possibly (and I have questioned if she had these type in the past) absence seizures...which could in turn cause the excessive sleepiness.

sigh

He upped her medication and is working with the insurance company now to set up a 24 hour video EEG. He said he wants to catch the mis-fires and see if they also see a seizure. She'll need to be in the hospital for 48 hours but hooked up to the EEG for 24 (that is going to be a load of fun by the way).

When we hung up, I cried. I have told myself time and time again to not get too relaxed about ANYTHING when it comes to Doodles but I guess when things are good for so long....I trick myself into believing that Makily is just fine.

Harsh reality is that she will never be "just fine".

I hate HATE the extra chromosome she has.

One tiny piece of genetic material can really mess up your body.

It can really wreak havoc on so many lives.

I wish I could give her back every single thing this stupid gene has taken from her.

One year ago today....

2009-05-02T20:29:00.001-05:00

......a four month old baby boy was placed in my very welcoming arms.

He smiled at me the moment our eyes met and I immediately fell in love.

It has been a year of many emotions, ups, downs and uncertainty.

We remain uncertain in the outcome of J's case.

Being J's foster mommy is the SECOND hardest thing I have ever done.

I wouldn't take any of it back.

Not. one. second.

It is BECAUSE of all we went through with Makily that I believe we have had the strength to continue on with our journey with J. She prepared us for the emotions and uncertainty.

I find it incredibly ironic that today ON the one year anniversery of J coming into our home, I recieved a call saying that the agency is reccomending Allen and I, as J's prospective adoptive parents. This is not something we believed they would recommend for reasons I can't go into here. Just know that an incredible weight was taken from my shoulders when I was given this news.

That being said...we know this is still far from over. Things can change in an instant as it has before in the past and so we continue to guard our hearts. We continue to hope for the best....but to expect the worst.

We continue to love J with all our hearts and treat him as though he is already our forever son.

We pray that one day soon, he will have our last name.

I long for the day I can splatter pictures of his sweet face all over my blog for all of you to see.

Until then, this will have to do....

Wild Waters Fun.

2009-04-30T07:35:00.002-05:00

Just pictures today folks.

Busy week.

Will blog more soon.

It's not always about me.

2009-04-21T18:10:00.005-05:00

A few weekends ago we and the Teals went to Sonny's for lunch. We are a loud bunch. I alone am loud so add three more adults to that along with four kids all five or under and well, we are a spectacle in a restaurant.

J was in rare form, he had skipped his nap and was eating his lunch late. Makily also was not being her usual Princess self. She was grumpy because her schedule was off.

Trishtwo leaned over to me and said "Those people keep looking at us". I take a quick glance back and sure enough the table behind us was looking. At first I shrugged it off thinking maybe they just were trying to figure out what kids belong to whom and if we would ever quiet down. Makily became so agitated though that Daddy had to take her out of her chair and hold her, she was hooked to the pump when he picked her up and her shirt went up. Her belly was exposed which obviously revealed she had a the feeding tube. It was more obvious because it was TAPED IN at the time. Seconds later Trishtwo again says "Gosh they are still looking at us, if they don't want to hear loud kids they shouldn't go to a family restaurant. I glance again and the Dad and I lock eyes for a brief second, I smile, say "Hi" and turn back around.

At this point I am CONVINCED they are gawking at Makily.

*sigh*

Trishtwo and I begin bantering back and forth about it quietly when Allen says "Hey do you two want to feel like real jerks"?

I say "not really but tell me anyway".

He says "They are bolus feeding the baby behind you".

I felt the blood rush to my head as I turned around quickly to see that Allen was telling the truth. I also noticed the baby had trache ties around her neck.

Usually I have radar for this, how did I miss it!?

I quickly realize that they probably thought WE were staring AT THEM just like we thought THEY were staring AT US.

THE IRONY.

So I whisper to Trishtwo "Should I say something? I can't stand it...I HAVE to say something".

I turn around and say "Hi, that is my daughter Makily she is hooked up to a feeding pump right now, how are you".

Talk about an ice breaker huh?

The whole table started laughing and admitted they had assumed we were staring at them because the Dad was feeding her....plus she had the trache and they get stupid comments about her all the time.

We talked back and forth, they told me about their little girl who was THE CUTEST LITTLE PEANUT EVER! She was reaching her hand out to me as I was talking to them. So sweet. She had many of the same complications and surgeries that Makily has had. It was refreshing to talk to them. I gave the mom my email address and blog addy. She contacted me this week.

WHAT ARE THE CHANCES THAT TWO TUBE FEEDING KIDS WOULD BE SEATING RIGHT NEXT TO ONE ANOTHER?

Slim chance.......I happen to think our meeting was for a reason.

What that reason is, I don't know.....I'll just add it to my list of one of those "things".

The Invasion of the Crud.

2009-04-21T11:42:00.004-05:00

Sorry for my lack of blogging.

The crud officially invaded here and we are now officially "The Snot Family".

Sounds lovely doesn't it?

I had been congested all week last week but it was really only bothering me at night so I ignored it.

Makily was really bad Thursday night so we kept her home Friday and took her to Dr. Pierre. We came home with Singulair, Prednisolone, breathing treatments q4 (for the lay person that's every four hours.....I sometimes miss using DOCTOR lingo...I DON'T miss office politics though.....I am such a dork).

ANYHOO

She was perked up already it seemed by Saturday.

Saturday day we went to the Square for the "Dance Festival". It was really nice, saw lots of old friends I haven't seen in a while and they all doted on Makily and J. Someone recognized me from Ocalamom and I felt famous! LOLOLOLOLOL Seriously I felt my head swell.......Allen just rolled his eyes at me and my head quickly deflated!

Since Doodle was doing somewhat better Allen and I went out dancing with the Teals while Granny doted on Makily and J.

Well I learned my lesson, I'm too old to go out on the town when I have a little bit of a cold. I woke up Sunday morning feeling like someone had shoved tissue up my nose clear to my brain. I had the headache from HELL (and no it was not a hangover for those thinking that LOL) SINUS PRESSURE IS AWFUL! Allen bought EXTRA STRENGTH nasal spray. I didn't know what the difference was....that is until I used it. GOOD LORD ALMIGHTY IN HEAVEN........It was so strong I thought my eyes were going to pop out of my head. It was like spraying Tabasco sauce up my nose. My eye sockets hurt the rest of the day. Thanks Allen.

Makily was still snotty Sunday, J was starting to run and then of course Allen started with it later in the day. Makily had a sleep study scheduled for Sunday night. I cancelled because I just wouldn't have trusted the results of a sleep study she did while she had a cold.

sigh

I had a doctors appt for today that I cancelled. J is still snotty and now poor Granny has the crud so I have no one to keep him while I go to the doctor(sorry Granny, I fear we gave this to you, you can't ever say we never gave you anything....he he he). I rescheduled it for next month. I hate going to the doctor for me. HATE IT. I know likely he is going to tell me I'm too fat, and that I need to eat better and take better care of myself which I really do. I hope by next month I will be in at least a little better shape that I won't be so worried about him saying "Hey fatty lay off the big macs".

sigh.

Anyhoo, I'm going to be at the March of Dimes this weekend for OCALAMOM. It's Saturday and I am super excited about being involved. Makily spent a month in the NICU so MOD has a special place in my heart.

We may go to Wild Waters with the kids afterwards. Oh we DID go weekend before last and HOLY MOLY it was COLD. Poor little J shook and his lips quivered but he was smiling and giggling sooo much. Makily just laid in my arms while I sang to her and "talked" to me. She fell asleep like that which TOTALLY made my entire day. We only stayed a few hours since it was not warm enough....although the weather man claimed it would be at least in the 80's...he so lied. We have passes though so we'll get lots of use out of them.

Will try to do a more interesting blog entry today maybe with pics. I do have an interesting "meeting" I want to blog. It's yet another one of those times that I say "I hear you God". I haven't wanted to listen to him lately for MANY MANY reasons that I won't get into here. Some of which has to do with Makily and with J, not them personally but circumstances surrounding them and their precious lives. I have found myself questioning things a lot lately and I don't know what that means. Maybe it just means I'm a normal human being (stop laughing....I'm sort of normal). More on this later.

She's a Mean Bongo Player.

2009-04-15T20:01:00.001-05:00

Some clips here of Makily playing with her favorite Speech Therapist Elon Bruner w/Therakids.

Make an on-line slideshow at www.OneTrueMedia.com

The NEW BUTTON!

2009-04-14T16:31:00.002-05:00

Makily has had her new AMT mini button in for one week now.

It's working BEAUTIFULLY.

I like it so much better. It's WAY flatter and smaller. It's more flexible so it moves more with her. It's leaked a smidge but nothing that's a big deal. Cool thing is it's really the same concept as the Mic-Key button, just a little different. I keep using Pampers and Huggies to compare them. Same thing just different brand....some people like one more than the other.

As long as this thing does not start popping pin holes in the balloons Makily will forever be an AMT girl. I also would love to find out what the difference is in the make up of the balloons for the AMT vs. the Mic-Key.

I wish we would have tried it sooner.

So if you have a child with a Mic-Key button that keeps developing a pin hole within days to weeks of inserting it, I highly recommend trying the AMT.

**I just re-read through this post and I sound like a television commercial.**

*Note: I reserve the right to completely change my tune about the AMT if for some reason it too starts popping pin holes......this review was made after just one week of use. Actually if the AMT starts popping pin holes like the Mic-Key's did then likely it's an anatomical issue with Makily and not the button after all. Let's hope it was just the Mic-Key right?

Here's a short vid just showing the differences in the two brands and after putting it in Makily's tummy.

Make video montages at www.OneTrueMedia.com

Easter.......

2009-04-13T16:40:00.002-05:00

Went to Nanny's.

Had an egg hunt, celebrated Herman, Nanny and Delaney's April birthdays.

It was great fun.

Enjoy the pics.......will be playing blog catch up this week, lots to talk about.

Delaney

Makily in all of her Princess Glory

A baby with eggs.

Hunting eggs....

Baby finds an egg!

Delaney found one in the tree! Micah's got a bag full!

I SEE IT!

Cool angle.

Makily and Me

Photo and video editing at www.OneTrueMedia.com

Doodles Party with PICTURES GALORE.

2009-04-05T21:02:00.002-05:00

Today went so well.

Everything was really laid back. Makily was in a WONDERFUL mood. She got lots of presents and was loved on all day long. Just want the Princess deserves.

I have had a few of you ask where we get Makily's clothes. I am a shopper when it comes to dressing her! I love to look and find JUST the perfect dress for her. The "bee" dress in her photo shoot was from Bealls, it was 40% off. I almost never buy ANYTHING full price unless it's SCREAMING at me to come get it. The dress she has on in today's pics actually was $7.99 at a local consignment shop I love. Some of the hair things I have made, had made for her or bought off ebay.

Anyway here are pics from her party and I am throwing in a few more miscellaneous ones from the last week.

Goldilocks aka Aurora.

Those sweet feet of hers.

This one is kind of "interesting". Her stander in the back and her pump in the front.

Easter Dress from Nanny and Papa

ADORABLE Dress from Auntie Liz. I asked Allen if he would model all Makily's dresses for me...this is the closest I could get.

Butterfly embroidery....Makily's fav.

SWEET dress from Granny.

The Teal girls picked this out for Makily!

From Cousin Nathaniel, Holly and Hailey

AWESOME blanket made by her Auntie Deborah...it's huge and fits her HUGE Princess bed perfectly. (Raggedy Anne courtesy of Granny)

She LOVES her blanket!

Play Date at the Park

Makily and Bri

Makily and her G.G. (Great Grandmother) on her birthday

Again....

2009-04-03T10:51:00.003-05:00

I've lost count of how many we have been through this month.

I think this is NUMBER FOUR of replacements that Kimberly Clark has actually sent us. They are REPLACING the REPLACEMENTS! When I ask what the problem is they can't give me any straight answers. She said that this usually only happens with 1% of their patients only.

I doubt it.

I mean don't me wrong I wouldn't be shocked if Makily was in the rare 1% that had this problem. I just find it hard to believe that it's really only 1%.

This one actually went bad on her birthday. That night when I was putting her to bed, I heard a funky sound.....I knew before I even looked at her tummy it was out. I didn't freak out though, I have put it back in so many times now that it's like putting in an earring.

I am awaiting an AMT button from Apria.

I called them last week saying we had to try a different brand because these Mic-Key's are junk......at least the last 20 of them have been.

They said it may take up to two weeks to arrive since it's not a button the generally keep in stock. I really figured the replacement Mic-Key would last long enough to get the AMT. I was too hopeful.

The last two buttons have lasted seven days or less.

No lie.

I ask you this:

How is it we can send a man TO THE MOON, but we can't make a button with a balloon that does not develop a pin hole within a week?

Birthday Photo Shoot and Stuff.....

2009-04-02T08:09:00.003-05:00

Don't you love all my technical quirky titles that include "and stuff"

So yesterday Makily had her "I'm Five" photo shoot. She's gorgeous. Really the kid looks like a doll. My friend Chontee and I went to duck pond and took pics. Well she took pics and I danced around like a fool singing Happy Birthday trying to get smiles.

I made a total ass of myself.

Not the first time I assure you.

When we came home Makily was sleepy so I set her up on the couch and she took a nap, I got some really nice shots of her sleeping. I know I am partial but some of the photos she does not even look "real" to me, she looks like a doll. I have heard that SO many times in the past from other people too.

I'll put the pics at the end of this post.

This year we are doing Makily's birthday differently. Usually we have the huge party with a bounce house and all kinds of other crap. Makily could care less about any of it. We decided to make this year ONLY about things that SHE would enjoy. It's about her and no one else. So we are having a small "open house" with cake (Spongebob of course)this weekend for family.

This is the cake, is it to die for or what? Daddy picked it out and ordered it on his own. It's got strawberry filling. Daddy rocks.

Seriously our friends and family would all shoot me if we didnt at least have something that they could come see Doodles, bring her presents and love on her. Then next weekend we are buying passes to Wild Waters / Silver Springs and spending the day at the park. Makily loves the water, it's good for her and so it's the perfect gift. The passes for BOTH parks are only like $50 that's for the entire year. Totally worth it since we will go so much and it's literally less than five miles from our house.

So here are the pictures of my big girl on her big day.

The "awake" park pictures were taken by Chontee and all the sleeping pictures were taken by me here at the house.

She's beautiful.

She really has an angel face, I love this one.

The infamous "squint, squint"

Cute one, we could not keep her straps up, her little shoulders are so low tone!

Emanuel Syndrome hands......it's amazing to me that all these children just LOVE their hands....Makily used to be obsessed. The older she gets the less she does it but she used to have NO interest in anything but those sweet hands of hers.

Doll Baby

Look at the little "dimple".

BIG GIRL!

The bow (not the clippy that's ebay) in her hair by the way was made by another Emanuel Syndrome mom. Jen, that bow is so special to me and I think of you and Jackson each time I look at it.

A nap (she looks like a doll in this one)

She's got great hair

I couldnt get this one unblurred, i like it anyways

"Flintstone Feet"

Too perfect to be real.

My love

Sleeping Beauty

Dedicated to Makily.

2009-04-01T08:00:00.001-05:00

I had thought about going through and re-hashing the two days I was in labor here on my blog.

I actually started to do it....I did the first night.....I began writing the second night.....

I am not going to finish it here.

I already wrote it out in the "How it all started" section of my blog to the right.

What is the point in rehashing it all right now?

It always ends the same, Makily's birth and life is NOT what I had dreamed it would be.

I hurts like hell but I can't change it.

I am determined that today.....I am going to try my best to focus on the positive.

Today should be about Makily and not me right?

I am going to focus on how far she has come and not how much she has lost.

To My Dearest Makily,

Today my sweet girl, you are five years old. FIVE. Where has the time gone? It seems like just yesterday they placed you in my arms. You were so tiny and so sick. I didn't know what to do. I saw the worry in every one's eyes as I held you, Dr. Pierre even looked nervous. She looked at me though and while patting my arm said "She's feisty Trish, just like her momma". I don't think ANY of us had any idea how feisty you really were, you sure planned on showing us though didn't you?

You fought so hard that first year.

We lived at the doctor and each time we went they told us something else that was "wrong" or needed to be fixed. We were in the hospital all the time. You kept going though. You wouldn't give up.

The odds stacked higher and higher against you, your doctors failed you, you suffered with incredible pain, your own Mother began to crumble at all of this but YOU refused to give in. You continued to fight for every breath you took, every hour, every second and every minute of your precious life you reamain determined. Many adults (myself included) would have given up with just half of what you were going through........but you just kept going.

I am in awe of your will to live and your strength.

When you smile at me my heart totally melts. I waited so long for a full out grin from you and it was well worth the wait. You light up the room, you truly do. Your laugh is the sweetest sound I have ever heard. The roof could be caving in on us and your laugh could make me smile anyway.

I love it that even though you can't talk you have figured out ways to get the things you really want. I love that I have learned your unique language and that I know what just about every sigh, squeal, cry and snicker mean. I know when you kick your leg over the other that you are fighting sleep, when you shake your head back and forth you are usually bored, when your arms get stiff you are excited, when you "patt patt" that's your way of saying "i love you, your pretty cool". I also realize that when you are screaming at the TV it usual means there is a commercial on and thanks to Granny spoiling the heck out of you, you are not used to having to sit through those (dang TIVO).

Although your life is not what I wanted it to be and not what I feel you deserve (let's face it you deserve the world and then some), you are happy and you have joy.

Isn't that what all parents want for their children?

Pure Happiness.

Pure Joy.

How lucky I am that I know you have that each and every day.

You have changed me in ways I never imagined and taught me more than I will ever teach you in a lifetime. You are loved and cherished by so many and I am so blessed to be your Mommy. Thank you for making me who I am today, for giving me strength I never thought I would possibly possess.

Thank you for loving me no matter how crazy I am or how hard I push you sometimes.

Thank you for your "patt patts" and for holding my hand even though that's hard for you sometimes.

Thank you for forgiving me for all the mistakes I have made. I know there are lots of them and I am sorry. I'm learning a lot of all this stuff with you.

Mostly thank you for the joy your bring to my heart.

Happy 5th birthday my baby girl, you have fought for each day and you are truly my hero forever.

I love you always my angel, Makily.

Love
Mommy.

At 8 pm tonight.....

2009-03-30T12:46:00.003-05:00

....it will be five years since my labor began with Makily.

I had felt crummy all day long.

Had Braxton Hicks the majority of the day.

I laid in bed around 8 o'clock thinking my BH would go away. I watched a surfing documentary on MTV. They featured a girl that was surfing and her arm was bitten off by a shark. She recovered and STILL surfs.

I remember thinking how brave she was.

By the time the show was over my "BH" were getting more and more annoying. I decided on a whim to time them.

To my surprise they were three minutes apart.

I almost panicked.

Allen was on the road. I was home by myself.

I called my Mom and Dad, then called the maternity dept at the hospital. They asked me if I had felt Makily moving, I told them not as much as usual.

They said I should come in just to be checked out.

My parents came and picked me up and took me there. I called Allen while I waited for them and he immediately started to head home.

I didnt know it but it would be 48 hours until Makily was born.

48 hours of LONG anxious labor.

I had no idea that would pale in comparison to what was about to happen to us.

Turned down a placement on Monday.

2009-03-25T18:03:00.003-05:00

That was hard.

I told my friend it's a good thing they call and don't just show up at your door with these kids and say "can you take him/her?".

I'D BE IN BIG TROUBLE!

It was a one year old little boy. Supposedly was only going to be placed for one month. The circumstances they gave me though were a bit shady and I really doubt it would have only been for a month.

I asked Allen what he thought we should do and he said "Well I would say yes but you are the one that is home 24/7 so it's up to you".

Gee thanks!

I thought about it and it is really the WRONG time to take on another little one SO CLOSE to J's age. It would be almost like having twin boys. GOOD LORD! Our April schedule is JAM PACKED full of therapy, doctors appointments, a sleep study, Makily's birthday, a couple of Ocalamom events and a ton of other things and so I knew it would be too hard. If they could have guaranteed a time frame we would have considered it more but they really couldn't and the reasoning behind the time frame wasn't making sense to me. As Judge Judy says "If it doesn't make sense it usually isn't TRUE"!

I felt guilty for saying no the rest of the day. I got up Tuesday morning though and was glad I didn't say yes though. J and Makily have so much going on this month and right now I just have to focus on both of them.

Thankful for the small things.

2009-03-23T21:23:00.004-05:00

Makily's pulmonology appointment was today.

Ho Hum.

They wanted $710 for our "back co-insurance payment"?

Uhm......WHAT?

No one could explain what that was....first girl said it was NOT a co-pay?

After back and forth banter it was discovered these WERE co-pays. (DUH?) Sleep studies are AT LEAST $1000 A POP, Makily has had three that's $600 PLUS co-pays for office visits that no one asked us for at the visits?

I said I had no intentions on paying $710.

We paid $150 and they saw us.

We'll be paying on that for a while. $10 a month. They want it paid in five months. Wonder if they hold their breath?

sigh

It sucks not to have back up insurance when you have a medically fragile kid.

Wait...isn't this post supposed to be about Thankfulness?

I'm bitching again.

ANYWAY.

The appt went fine. Of course as with EVERYTHING ELSE concerning Makily all the solutions he offered for her have a "will fix this but could mess this up" or even better, my favorite "not guaranteed to work but IS GUARANTEED to cause lots of pain". Let's jump at that option shall we? NOT REALLY!

Here's what we went over:

1. C-Pap is a no go for all the reasons I mentioned and he totally agreed.

2. He mentioned a jaw distraction again. Says he feels the apnea is likely caused by the PRS. Reminded him that we already talked about that and decided not to do it. He then asked me if I had spoken with the Craniofacial team.

*sigh*

I then reminded him that YES Makily had seen Craniofacial since birth we spoke with them about a distraction at his urging over a year ago and they said NO her PRS is not severe enough to do a distraction and that they felt that it would be too much trauma for her.....I agree. Before he brought up removing her tonsils and adenoids I reminded him they were microscopic per the ENT and in no way were causing the obstructive apnea (Didn't I just pay him $150 to know all this....I'm just sayin). He then said that jaw distractions are very painful and that it's not guaranteed to fix the problem.

3. Supplemental oxygen at night. He is on the fence about this but at this point it's the only "solution" I see. His fear is that if she is requiring too much oxygen while she sleeps that her body will become dependant on it (that didn't make sense...all our bodies depend on oxygen right? heh). What he means is that he is afraid Makily will start NEEDING oxygen more than just at night as her body's drive to breathe will not be as strong since it may get used to having oxygen during the night. He says if she only needs a small amount that it shouldn't be a problem BUT if she is needing two or more liters then she could have troubles down the road. Makily needs more breathing problems like she needs a hole in the head. I am not thrilled about doing oxygen at night and risking her body eventually ALWAYS needing it but on the other hand SHE'S TIRED. She's tired A LOT. They even mentioned this at her IEP. I don't know what to do about it.

So we are doing another sleep study. When/if she starts desatting they will put nasal cannula oxygen on her and see if that helps. They will see how much she has to have to keep her sats up. He did say that since she is bigger the apnea may be better but with as sleepy as she is I really don't think that it's gotten better. I'm no doctor though. I just work here.

The good news though is that Makily was SO HAPPY all day today. I just enjoyed watching her giggle, smile and laugh. It was awesome. She is great on car trips. She loves it. I took video.

Here it is:

Make video montages at www.OneTrueMedia.com

See like I said, "thankful for the small things". ;-)

Bits N Pieces.

2009-03-22T20:59:00.007-05:00

Okay so this will be a chopped up entry with stuff I meant to post/blog in the last several days but with everything going on have not done.

1. Makily went to see Neuro last week. All was fine, he wants to wean her meds. He told me she is really ONLY on 1/4 the dose for her weight so he doubts that is doing anything for her. She has been seizure free for nearly three years, EEG's normal, MRI's unchanged...yada yada yada. We are going to do another EEG and discuss weaning again after that. I don't know how to feel about weaning, I am back and forth. I do know I do NOT want to see Makily seize EVER again. EVER. EVER. Did I say ever? He assured me that we would have emergency medication on hand but I don't know. What can I say, I'm a nervous mommy.

2. We see Pulmonology tomorrow (Monday). Makily is *supposed* to be sleeping with a C-PAP on her face. Long story short....she's not. We have the machine, she just refuses to let us put the damn mask on her...here is a picture of the thing (Makily's does not have the straps that go around her head though, it's almost like a freaking hat with a ton of holes in it).

I ask you......how many of you with "normal" four/five year olds would wear this to sleep in? She screams bloody murder, I can't torture her like that. On the other hand she's always sleepy so my guess is that it's from the sleep apnea....sigh. At this point I am just hoping he will suggest supplemental oxygen at night via nasal cannula. She tolerates that (has before in the hospital) better. I assume he is going to order another sleep study.....I LOATHE sleep studies. Makily LOATHES sleep studies. It should be loads of fun.

3. All is quiet on the fostering front. *knock on wood* I like quiet when it comes to that.

4. Joined a new gym. So far I love it. It's like $20 a month for use of all the equipment (treadmills, bikes, the stair climber thingies, weights). They have a 30 minute circuit training room that I love. I also get unlimited tanning too so it's an awesome deal! I want to lose some weight before the summer. Seriously I am so tired of going up and down and up and down...story of my life.

5. You may recall from THIS ENTRY that I did something incredibly stupid on the way out of town and I promised to share my shame?

Well here it is.

Allen and I were rushing around like mad (I was rushing around....Allen GOD LOVE HIM has two speeds turtle and tortoise, he DOES NOT rush unless his hair is on fire) trying to get out of the house to head to Orlando. I of course gave him a hard time about it. I know I really need to work on this, it's a quirk I have....I multi-task and I just want everyone to.

ANYWAY.

On the way out of town we were going to drop the water bill off in the drop box. I go to get out of the van....look down and see this:

Did you not quite get it?

Well here let me help you.

MY LEFT FOOT

MY RIGHT FOOT

I had no idea I did this....NONE....I didnt feel the difference. Oh and did I mention these were the ONLY shoes I brought with me? We made a trip to Walgreens as soon as we got into Orlando and I bought a pair of MATCHING sandals.

I am a scatterbrain.

Allen made me go into the jiffy store to get him Mountain Dew with my mismatched shoes. He laughed at me all day. I deserved it.

Here are pictures from the rest of that trip:

Allen Squinting by the pool

Aubrey being adorable

Makily having a good time

Makily

Eating and sitting with Mommy

The Pool

Some really cute baby feet! ;-)

Here are a few more snap shots from the last couple of weeks. I havent shared pics and so I thought I would catch up here.

Sleepy Girl after school

Cute baby watching TV

A sleeping Princess in her little (okay HUGE) nest.

Time for SCHOOL!