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...
Saturday, July 30, 2011
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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