So how's Makily doing?

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.

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.

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!

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"

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.

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?

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.

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.

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.

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.

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......

*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....

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.

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.

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!!

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.

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.

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...

...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.

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.