Thursday, November 24, 2011

Surgery update

Well the surgery went as planned. Bodie did well and we went to see him after the surgery in the PICU.

He was swollen and unhappy. It was a long 48 hours and then the Doctors noticed a problem. The right side was not adjusting correctly. They had to go back in under anethesia and fix the problem. His skin was stretched so tight that it was holding the adjusters from moving. So they cut the skin/flesh so it could move where they needed it.

After a looooooooong eight days we were able to come home. Wade stayed with Paula because he had picked up a cold, (more on that later).

And now the pics...

Before: (He was as happy as can be)


After:









Finally starting to feel a little better:


Corinne even stopped by for a visit to cheer him up:






The jaw distractors will come of just before Christmas hopefully.

Wade came home sick from Paula's & despite our best efforts to keep him quarantined, Bodie got sick.

After a trip to the ER he's back home on antibiotics & improving slightly.

This has been a hard month on all of us so far.

RH




Tuesday, November 8, 2011

Big Surgery tomorrow

Tomorrow is the big day. Jaw distraction surgery (again) and closing the cleft palate.

I'm nervous mostly due to anestesia fears more than anything.

I hate that Bodie has to endue yet another surgery that will leave him immobile, sore, hurt, scarred and helpless but I know the results will be worth the suffering in the end.

Oh to be rid of that damn trach!

Praying everything goes smooth for the Surgical team & for my beautiful son.

RH

Monday, October 31, 2011

Bodie Crawls!


Bodie Crawls! Hooray!

What a wonderful day it was Saturday. I was out running errands when I got a call on my cell phone from Brandi. "You'll never guess what your son did" Of course I'm thinking that Wade must have broken something, but it was GREAT news instead.... Bodie Crawled! For the last two months he has been able to pull his legs up underneath him but not able to crawl... until Saturday.

As of last night, he is now pulling himself UP on stationary objects too!

I am so happy that my little boy is making such great progress!

Thursday, September 29, 2011

Surgery update...

We went to see Dr St Hilaire in New Orleans today. He's the doctor that performed Bodie's jaw distraction. Well, he's going to do another one & close the cleft palate at the same time. Looking like this will all happen around the first week of November.

RH

Monday, September 19, 2011

Making progress...

My sweet boy is doing great things lately. He's learned how to flip from his back to his stomach & can "crawl" backwards- more of a scoot than a crawl actually. But it's progress and I'm a proud Dad.

Bodie is still as happy as ever. I swear, tht kid knows how to appreciate life & smiles at me every single time he sees me.

Heading into Fall we are expecting a surgery date for the Jaw Distraction part II. Hopefully to be followed by the Cleft repair surgery, (soon as well).

The main thing is to be vigilant during Flu season to keep Bodie & Wade from getting sick.

Wednesday, August 17, 2011

HAPPY 1st BIRTHDAY!!!

From Mommy:

Well my love...it's been quite a year. Without a doubt, the hardest of my life.
When we decided to have another baby, I thought the extent of my sacrifice would be going through the pregnancy, delivery & baby years all over again. We never imagined we'd both be going through an emotional breakdown instead. We never imagined we'd be watching our baby fight for his life.
Of course you know about all the bad things that can happen, but you never really think it could ever happen to you. You see things on tv, and you cry along, and you think if that ever happened to me, there's no way I could handle it...but you do. You get through it one day at a time, one hour at a time, you go numb, you build up walls, you pretend like it's not real, you spend most of your time with your head in your hands, you go through the motions like a zombie. You hope, but you try not to hope out loud cause your scared you might jinx something. You cry in the shower or in bed cause you don't want to freak out your 3 year old, and you don't want your Husband to see how weak & hopeless you are. You try to maintain your feelings so you don't pile anymore stress or grief on your partners shoulders. But mostly, you fill up your mind with all these selfish little thoughts, because if for one second you let yourself think about the hell that baby is having to endure, that's when you lose it.
Look at you now though! Look how far you come, it's absolutely amazing! You have been through so much, but you still smile all the time. I guess you appreciate life more than most people, because you know firsthand how fragile it is! I love watching how determined you are to do everything, you don't let anything get in your way. Just like you were determined not to let anything cheat you out of your life! I hope you always keep that happy & positive disposition all through your life.
It's funny to think back to those first few months and remember how angry and bitter I was that this happened to us. I felt unlucky. And now I realize just how lucky I really am. I got to witness an honest to goodness miracle, I got to find out how strong I am, and how dedicated this family is, and I learned how to be grateful. But mostly, I'm lucky because I have you!
Happy Birthday Sweet Angel!

Saturday, July 30, 2011

Results in...

No Muscular Dystropy, but Bodie has Mitochondrial Complex 1 deficiency.

Basically, his muscle Mitochondria do not produse ATP (needed for energy).

Studying up on what this means & how to treat it.

In other news, he will have to have yet ANOTHER jaw distraction. The first one did not move his jaw out far enough.


Getting there slowly but surely...