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.
Monday, September 19, 2011
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!
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...
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...
Monday, July 25, 2011
Nervous Anticipation
Tomorrow is the big day. We've been waiting for Bodie's muscle biopsy results for well over a month... (since he had his jaw distraction surgery in May).
We should know the results tomorrow & hopefully they will show that he does not have Muscular Dystrophy.
Praying extra hard tonight...
RH
We should know the results tomorrow & hopefully they will show that he does not have Muscular Dystrophy.
Praying extra hard tonight...
RH
Monday, July 18, 2011
Sitting up!
Bodie is finally able to sit unsupported!
We have to help him into a sitting position, but after that he can maintain his balance. It's like whole new world to him...
I'm so proud of my little buddy!
Saturday, July 9, 2011
Speaking Valve success!
Bodie has a little purple cap that fits on the Trach called a Passy-Muir Speaking Valve.
http://passy-muir.com/
It essentially redirects the airflow from his lungs (exhalation) to his upper airway, (mouth/nose) instead of exiting his Trach. It allows the air to pass his vocal cords & vibrate them in the process making....you guessed it, sound!
This redirection of air must seem foreign to him, because all he's ever known is breathing through his trach. It's taking some getting used to. He hated it at first & would only tolerate it for a few seconds. He has since worked up to over an hour now, (Thanks hunny!). He must get to the point where he is wearing it all day before we can attempt another decanulation, (permanent trach removal).
I'm excited about his progress & LOVE hearing my sons voice! He coos & makes little squeaky noises.
I hope to attach a Youtube video soon.
http://youtu.be/mUfODGh5Dgg
RH
http://passy-muir.com/
It essentially redirects the airflow from his lungs (exhalation) to his upper airway, (mouth/nose) instead of exiting his Trach. It allows the air to pass his vocal cords & vibrate them in the process making....you guessed it, sound!
This redirection of air must seem foreign to him, because all he's ever known is breathing through his trach. It's taking some getting used to. He hated it at first & would only tolerate it for a few seconds. He has since worked up to over an hour now, (Thanks hunny!). He must get to the point where he is wearing it all day before we can attempt another decanulation, (permanent trach removal).
I'm excited about his progress & LOVE hearing my sons voice! He coos & makes little squeaky noises.
I hope to attach a Youtube video soon.
http://youtu.be/mUfODGh5Dgg
RH
Tuesday, July 5, 2011
Thanks Mom!
After visiting with us for a month, my Mom headed back home today. A ten hour drive is too far away from Me-me.
I hope she can sell her house quickly & come stay closer to our Family.
I love you Mom! Thanks for everything you did during your stay, we had a great time. See you real soon!
I hope she can sell her house quickly & come stay closer to our Family.
I love you Mom! Thanks for everything you did during your stay, we had a great time. See you real soon!
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