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...

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

Sitting up!

Huge milestone!

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!

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

Thanks Mom!

IMAG1558, a photo by ryker1970 on Flickr.

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!

Keep on truckin...

Slow but steady progress. That's how we roll.

It's been a week since the distractors came off & the failed capping attempt. Bodie is doing great otherwise. He seems happier (how that's possible, I don't know) maybe because the distractors aren't poking him anymore & his face is beginning to feel "normal" again.

The recommendation we received was to increase the time we are trying his Passy-Muir speaking valve on him, so eventually he can work up to tolerating it for a whole day. This could take months, but we are going to remain firm in our resolve to see this through & get rid of that damn trach.

He's doing much better at sitting up, (supported) and is almost able to roll himself over on to his stomach.

Finally, he just keeps getting more adorable each day. I do love that boy!

RH

One step closer...

Before surgery to remove his jaw distractors:







and AFTER:

Unfortunately, the trach capping didn't go well. He's still got the trach for some time to come now...