So I am totally in love with Makily's Neurologist.

He is the sweetest man. The last several times we have seen him he has joked around. He remembered Makily by how she claps feet and with how much force. This kid is totally limber people. Sometimes I'm appalled and impressed at the positions she sometimes gets herself into. I will go and reposition her and she will look at me, annoyed, and wiggle RIGHT BACK into the awkward position I just changed her from. She's funny with blankets like this too. You will get her all tucked in, snug and tight and as soon as you step away she'll grin and start kicking it off. She'll have it up to her waist in no time flat. Then she'll giggle while you put it back. She'll play this game as long as you will.......or until she's craving Spongebob.....she is addicted.

I allow it though.

Call me an enabler....lol.

wow

That was a rabbit trail if I ever saw one.

ANYWAY

I love the doctor he's friendly and sweet to Makily and he also is the one that admitted the misdosing on Makily's diastat. Most doctors would have blamed everyone else and their brother or just avoided the topic altogether. Not time. He said right up front that the Nurse Practitioner had written it that day and that it was their (as in his entire office) fault and how sorry he was. wow.

Dr. El Bohy feels that we should change NOTHING right now even though Makily had a suspected seizure.

He says since the seizure did not affect her respiratory system or heart rate that it's worth the gain in progress towards walking and communication.. I agree wholeheartedly. Now if she starts having longer, more frequent or respiratory compromising seizures then we will obviously rethink this.

I'm pretty confident in this decision as Makily was totally interactive, giggly and happy today. She didn't nap ONE time. She's just overall happier.

I'm holding my breath and hoping that we have no more issues from here on out.........we'll see.

It started out to be a great day.

I got up this morning and did Makily's morning routine with her. The same routine I do every morning before school. I was on time and proud. I say that because I am HORRIBLE in the mornings. I can never find a shoe, Makily's AFO's, the last clean bib.....ugh. Half the time I can't find a bra and so I will run out of the house making sure to wear a shirt with a picture on it. Since as my friend Whitney says "It's ok to go bra less as long as your shirt has a design on it." Ever since I came home from the nut house I have been much better in the mornings and I actually am on time more than I'm not these days.

I hurriedly got both the kids strapped into their car seats and jumped in the drivers seat. I glanced down at the clock. 7:31 AM. Damnitt I think. I can make up the one minute so long as we hit ZERO traffic. The windshield wipes squeaked loudly. You know the squeak they make when your windshield is not quite wet or dry? Makily BELLY laughed each time it squeaked and I clicked them on and off to watch her laugh over and over. It made me happy.

I got to the school, one minute late but since it was raining the buses were slow so thankfully they were still out waiting for us. I dropped off both the kids at school and went home. My friends Justin and Trish called and asked if I wanted to hang out this morning. I drove over to their house and we had some of the funniest conversations. We laughed and joked about all kinds of things. It was a relaxing happy moment. My phone rang at one point and I said "Ugh I hate it when my phone rings and Kily is at school, makes me nervous every time."

I went and picked Jakob up from school and took him grocery shopping. He was such a good boy and even helped me check out each item at the self checker. I stopped to get him a Happy Meal at Burger King and we headed home.

Halfway to the house my phone rang. I got anxious but when I picked it up and saw it was the school my heart jumped into my throat. I answered hoping and imagining it was just going to be a question about paperwork or a reminder to bring wipes to school. Instead it was someone asking for Makily's mom. She said Makily is having a seizure.

The world stopped.

I hung up and threw the phone and immediately turned the car around.

I went from completely calm to panic attack in about two seconds.

I turned my hazards on while I cried and began dialing Allen.

No answer.

I called again....no answer.

All the while I'm shaking and trying to drive.

I called my niece Tara and said "Tara Makily is having a seizure please call Allen, I've been trying and he is not answering and I can't have a panic attack, drive and call anyone else." Tara said she would call him immediately and let him know.

At a stop light I sobbed, all the sudden I hear Jakob's angelic voice say "Makily why cry?". He repeated it several times and I just had nothing for him. I couldn't answer him....looking at his sweet face broke my heart. I could see the fear in his young eyes and I hated Emanuel Syndrome again in that moment for scaring not only me but my baby. When we got to the school I have never seen Jakob move out of the car so quickly. I threw him on my hip and ran. Typically he would have complained and yelled "Mommy I WALK", but he knew something was wrong and again started saying "Makily why cry Mommy."

When I walked into the class room someone took Jakob and I walked over to Makily laying on the floor being assessed by the paramedics. Her eyes were not her own but she had already come out of the seizure and was moving around. There was some concern about her oxygen saturations and because of that I opted to have her go to the ER just in case. The last time this happened Jakob's teacher kept him until someone else could pick him up so I could ride on the ambulance with Makily.

I asked if that was okay to do again when the woman in charge said that "Due to their special staffing circumstances that it was not possible." Makily's teacher piped up and said well he could just stay in this room with us and we will watch him. Again the woman in charge said "We are just too short staffed." I wondered how hard it could be for a school with two pre k classes to keep ONE Jakob (although HE IS a handful. lol). I looked at her and said that's fine I will just figure it out. She then explained that I could ride in my car behind Makily. I told her I knew that but there's a difference. Either way I got it. A few moments later as I was leaving she said she worked it out and they could keep Jakob. I thanked her.

When we got to the hospital Makily was acting like her normal self. Her temperature was low and her oxygen sats were still in question. They couldn't figure out if she truly was satting low or if the probes were just bad. I, for obvious reasons was not comfortable leaving without knowing which.

The ER doctor called Makily's Neurologist and at this point we are going to do nothing.

This seizure was different than the last. She just went totally limp, her pupils became fixed adn dilated and she was unresponsive. It lasted about two minutes and they were just laying her down for a nap when it happened. So she wasn't overstimulated.

I don't know what we will end up deciding or doing when we see Neuro on Wednesday. Part of me wants to wing it and keep doing what we are doing now and if we have to deal with a seizure every six months then so be it. I am so proud of the progress Makily's made in just the three weeks she has been off the meds. We got this note home from school just TWO weeks off the Keppra.


I just can't imagine putting her back on a second medication when the last one drugged her up so much. She was regressing and not making progress and now I see how bright eyed she is and we are seeing progress again. I hate that I have to make decisions like these.

I don't know what to do.

Thanks For the Doggie Biscuits.

So Allen and I are horrible neighbors.

We don't associate with any of them.

I sorta know the old guy catty corner to us but we just wave at each other.

There is another old man that sits on his walker down the street and waves. He is always outside on his walker.

I bet he's bored....anyway....

Jakob plays outside all the time.

My neighbor behind us came over the other day with a variety of things from my yard. I'm immediately embarrassed as she tells me she found all of those things in HER yard.

Someone threw them over the fence.

I start apologizing and saying I will take care of it and make sure it doesn't happen again. She then tells me that it hadn't happened before and she thought it may have involved other kids in our yard....the day before we had friends over with their kids so it was possible. I thanked her and apologized again and she went home.

Yesterday she shows up at my door with her two year old on her hip and a bag of doggie biscuits. I'm in sweats and a t-shirt with glitter on my face from having had my makeup done by Trishtwo the night before for her portfolio (she's a makeup artist). I'm just disheveled.

Portfolio costume makeup by Trishtwo. I'm a devil.


She tells me that she coupons and got an entire case of doggie biscuits for free and so she brought us a bag. I realize at this point she is trying to make friends. I took the doggie treats and thanked her. Jakob then comes barrelling to the door screaming with SallyWaWa on his heels barking away. He runs into me throws up his arms saying MOMMY I UP...I UP! I pick him up as the neighbor lady is discussing how to coupon and bla bla bla all the while Jakob is reaching over me to ring the door bell. If I didn't let him ring it he fought me more and made me look like EVEN more of an idiot to this nice doggie biscuit bearing neighbor.

Each time he'd ring the bell he would hysterically laugh and say "Mommy I bell".

Someone kill me now please.

The lady continued to talk while Jakob and I did the doorbell shuffle. The entire time her little boy was perched perfectly on her tiny hip, quietly holding his sippy cup.

I remember thinking this lady must think WE ARE FREAKING NUTS.

I told her I would try to stop by one day for coffee and we could chat and she could show me how to coupon.

She said coffee gives her acid reflux.

I think she changed her mind about making friends.

Ha.

Learning How Not To Strangle The K-Mart Check Out Lady.

So one thing that has been helped NOTICEABLY since I got out of the nut house is my temper.

It does not flare up nearly as much as it used to and I am much calmer about things when I do get pissed off.

I won't say that before I was tyrant or anything but when someone ESPECIALLY someone in customer service would piss me off (because they were lazy or just didn't want to do their job) I would lose my shit and not care who was around.

I went to K-Mart a few weeks ago. I am slowly redecorating the house right now and they were having a sale "ALL HOME DECOR 50% off".

So to me that means well.....ALL HOME DECOR is 50% off.

Yes I K-MART decorate my house and I AM PROUD.


I picked up several pics for the walls, decorative pillows and a really cool matching mirror set. I had a few other things and they were all home decor BUT I know how K Mart can be sometimes. I knew I'd get up there and this or that would be marked full price. So I just decided I'd have the cashier price check the items that I knew would be questionable.



Of course there are like two cashiers working and full lines so I wait forever to get checked out. Those that know me KNOW I am not patient person although I AM WORKING ON IT so I was already a little irritated with the wait.

I always get behind the person that says YES.

When I got to the front of the line I had all the items I wanted price checked together. I put them on the counter and said:

"These should all be on the 50% off sale but I just wanted you to double check they are truly on sale because I know sometimes it doesn't ring up right."

She looks at me....annoyed....and says "Didn't you price check these yourself using our in store scanners?"



*blink*

*blink*

My first thought and answer WOULD HAVE BEEN:

"No you DUMB ASS, I did not. Had I done so WHY THE F*CK would I have gotten all these items into a pile together and then asked you to do it? FURTHERMORE, YOU are the cashier I AM THE CUSTOMER, will it kill you to scan FIVE items and tell me the freaking price so I know they are on sale....ISN'T THIS YOUR JOB....WAIT A MINUTE did I accidentally go to a SELF CHECK OUT LANE.....is this my mistake?....NO WAIT...IT'S YOURS....price check the items asshole."


Instead of going off on that tangent LIKE I REALLLLLLY wanted to I said this:

"No ma'am I didn't see any self checkers in the store and......."

She cuts me off and says

"Well THEY ARE ALLL OVER the store."


*blink*

HUGE SIGH

She's really trying me now. Basically saying I'm blind or just a plain lazy idiot for not scanning MY OWN items IN THE STORE...WHEN SHE IS THE PAID CASHIER.

l
sigh

I just said "Well I don't see any...."

Then she cuts me off AGAIN and says that she isn't supposed to price check my stuff because they are on a timer and it takes too long to price check.

I pause for a moment to do this in my head.....



I ooked at her and envisioned JERKING her out from behind the cash register and QUICKLY scanning the items myself to show her how fast it can be done.

BUT AGAIN.....I still had a shred of restraint and said...

"Well what if a customer is like me and does not know this rule....and let's face it......not many are going to know it......are they just OUT OF LUCK AND FORCED to buy something at full price that should be on sale....I'm sure you have elderly people that come here that don't even know how to USE the self checkers throughout the store.......much less see them."

Then she said that she was going to do it for me this time (how effin kind of her, she's doing her job for ME this time) ....and would you believe that two of the items rang up full price?

When I argued and said "Aren't all home decor items on sale?" She just looked at me and said YES. I said "Well isn't that wall picture HOME DECOR?" She said YES and then just stared at me.

I asked why it was ringing up higher she just said it must NOT be on sale.

I told her I didn't want it and got the rest of my items and left the store.

I'm trying to change....really trying but sometimes people really know how to make it difficult.



*BTW I realize there is a paragraph that is a link to one of my pics and I can't figure out how to get rid of it....so I left it there. SORRY!*

Is this what numb feels like?

I have found that if I take my meds later in the day then usual, I typically have more emotional moments.

In fact if I'm crying, typically the first thing I think is "Have I taken my meds yet?"

Today the answer was "Whoops...NO."

This morning I was driving home and it seemed as if every song on the radio knew how I felt.

I'd change the station and THERE it would be again.

It's like it was chasing me.

So I listened to the music that reminds me of the things that make me sad.

I cried....wondered if I took my meds.....realized I had not.

So then I cried little more.

I wonder if these meds are just numbing the pain I have or if I really am getting better?

Has the medication just put a huge band aid on a wound that will never heal? Like a shot of Lidocaine, it burns like a bitch at first but then your numb.

At times I feel like I NEED to cry but I just CAN'T which is a bizarre feeling.

I guess it doesn't matter either way because all I know is that for the most part, I'm happier than I have been in YEARS.

The thought of going back to the dark place I was in is JUST NOT an option for me.

I won't let myself slip that far down again.

Awakenings.

The last two weeks I have watched Makily's eyes become brighter and she is smiling all the time.

It's funny that in the beginning all her weird quirky movements would have made me uneasy for fear someone would stare at her. And now, nearly eight years later, here I sit still writing in this blog....watching her rock and shake and grin wildly and it makes my heart soar because all these things mean Makily is happy.

That's all I want and need.

I've said so many times I just want to see Makily dance on stage in a tutu.

My Prima Ballerina.

She's sure got the legs for it. Long, thin, dancer legs. Each time someone comments on her ballerina legs inside I am cringing. Wishing they were legs that she would leap and jump gracefully with.

Then today....really just now as I am writing this I realize that dancing in a freaking tutu may be awesome. But how can that EVER.....EVER compare to what she can do and on top of that what she does without even being able to speak? My kid's videos and blog has comforted more people than I will ever probably know. THAT'S HUGE. That's humbling in ways that I can't even begin to express with words. I don't feel like I am "great" enough to have this blessing (and yes in sad times...this curse) bestowed on me. I'm just me....I obviously can do this but doing this nearly drove me crazy.

She though...she is a ray of light. She is the one thing on this earth that I can hold in my arms and just "be" with and in that moment EVERYTHING is alright. Nothing exists except she and I. It's like Xanax.......but without the side effects.

According to the doctors and statistics, Makily should have been miscarried, stillborn or died soon after she was born. The pulmonary hypertension SHOULD have and nearly did kill her. The overdose when she was six months old, I thought for sure that was it. Then the fucking seizure.......that's the closest I have felt....closest I have gone in my head to her actually dying.

All those things, and here she is sitting next to me in her chair, watching Fairly Odd Parents and grinning at me. That's a hero. THAT is strength. She is perfection........Makily will always be spiritually PERFECT. What more could I ask for?

Is it hard? Yes.

Would I have chosen this for her? Never, but Makily's journey on this earth is more powerful than most. She has these old eyes. She looks like she has been here before. Like she knows something I don't. Like she understands why her Mother is crazy....and she forgives me for it because she understands.

That sounds crazy. Maybe I am. Maybe IT is.

I've watched her in the last several days "awaken" from the haze of TWO seizure meds. We've nearly gotten her weaned off the Keppra and she is brighter, happier and much more engaging. I look at her and my heart swells I'm so proud. I'm so lucky she is still here. Science says I shouldnt have had her for this long.

Makily is showing them.

You keep showing them my girl.

Love Forever
Mommy.

It's always an adventure with ME.

I saw Kelly Clarkson last night.

IT. WAS. AMAZING.

Worth every single penny we paid for the tickets and headache it was getting there.

I had google mapped the directions. I have GPS on my phone but last time I used it, it got me really lost and then lost signal and I was on I-4 during like rush hour traffic. I figured we would use the GOOGLE map directions and my GPS only as a backup.



We drive for TWO hours and according to the google directions we should have been arriving at any moment. We realized something was up because streets and places weren't matching up at all. For a few minutes I actually thought I had pulled up THE WRONG VENUE address. I was none too pleased. Finally we realize I had the right address but GOOGLE MAPS had it wrong and at this point we were an hour away and the concert started in 30 minutes.

I almost cried.

I have this awful car quirk.

If I am going on a car trip, if the trip should take two hours but for whatever reason it takes longer I start getting anxious at two hours and one minute. I never mentioned this to the shrink but it's annoying and weird. So I was driving in the dark on a HUGE interstate highway in a city I know nothing about an hour away from the concert that starts in 30 minutes that I paid an arm and a leg for the tickets for. To top it off I am going to be in the FRIGGIN car a additional hour. I wanted to bludgeon (okay beat...bludgeon could be a bit much) the person who had screwed up the Google directions. I kept my cool though. I did not have a hissy fit although I was on the verge of it.

We FINALLY get to the venue, park and rush inside to find that the opening act had just finished and we had NOT missed ANY of Kelly.

PHEW!

I immediately was in a better mood.

We walked down to get into our seats and the farther to to the front we went the more surreal it became. I kept looking at Trishtwo going WOW this is for real. We got to our seats and neither one of us had any words. We both just kept looking around with really goofy grins on our faces.

Don't mind my sweat!


We made fast friends with the people around us. (minus the lady described farther down) lol

We were less than 6 feet from the stage.

We went to the bar and both ordered Rum and Cherry Cokes. I didn't want to get plowed like the lady behind us.

She kept screaming a mixture of the following:

1. AHHHHH I LOVE YOU KELLY

2. I LOVE YOUR MICROPHONE KELLY

3. YOUR GORGEOUS

4. YOUR DOING A GREAT JOB

5. YOU SING MY LIFE KELLY

6. I LOVE YOUR MICROPHONE STAND.

Then she would do some Indian sounding yell. She was toasted out of her mind and her husband was trying to keep her STANDING up. Finally they ended up leaving before the concert was even over.

She sounds AMAZING live. Just as good as she sounds if not better than on the radio. She doesn't have a bunch of dancers or terribly intricate stage sets but they were still really cool. I liked how it is just HER and her beautiful voice. She's really cute in person too.



She sang all my favorites and some of them she did a faster or slower version of and they all sounded great.



When the concert was over we got a sackful of Krystals (don't judge) and spent the night at a hotel. How fun!

We drove home this morning and I have to say the last week has been so good for us. For me. For Makily. For all of us. I just hope things continue looking up.

This was the song that was my favorite from last night. So beautiful and sad at the same time.



More pics below.

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

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.

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

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.

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.

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.

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.

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.

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.

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.