Here's that video of Maia playing xylophone at the Harlem Globetrotters

[F-Litz]

Hi Holly,

Serial casting worked fast. It wasn't too heavy either - they used a fiberglass cast that they just wrapped on. The thing about it is that it's on 24/7 so the muscles never get a chance to contract at all during that whole time. But she's in that belly buster splint now just after being casted for a very short time. The splint is extremely lightweight - like feather just about. It's made out of a thin type of thermoplast - you heat it up in water and then shape it and it dries hard. All of Maia's past splints were really heavy, too and I do believe that they played a huge role in her dislocating (because of her posture at sleeptime). Her past splints had metal joints, etc. - that's what made them so heavy.

It's only been two weeks for Maia so far.... we may have one more week in this belly buster cast and then we move to nighttime only splinting - which will also be in a splint but without the punched out section that the belly buster has. And we're going to add a piece for the hand to help her ulnar deviation. I think that she'll probably have to sleep with something until she stops growing because when she sleeps she postures in a bent arm position and that's one of the reasons we got to a 40 degree contracture in the first place.

We cannot do Botox on Maia because she's a highly allergic child and she can't even get immunizations because of the reactions she's had (we tried 2x) - so we won't chance anything with Botox. But I can understand how someone might want to use Botox in a severely contracted muscle.

Best of luck with this,
francine

[Shlomo]

Masel Tov!!! It’s only because of you giving here the support and courage!!
Keep up!!!!!!!!!!!!!!!!

[Ben's Dad]

Congratulations Maia and Fran...you've worked long and hard to get that far...enjoy every minute of it...it's only the beginning. Thanks for sharing with us.

[F-Litz]

You're welcome. I know that some people might read this post and think that I am bragging like "look what my kid can do". But for those of you who know me for a long time know the struggles we've had and also know that Maia fell 3 years ago and lost everything and she has really fought her way back from hell and beyond. That she can move her arm to play this xylophone is miraculous in my reality and everytime I watch it I cry and watch in shock. Just to have her pick herself up and get back into life with the zest she has after losing everything (after working so hard for 6 1/2 years) is amazing. We have certainly been tested and have been through the mill. In the next few months there will be tons of concerts and shows, etc. and I'll just keep on posting them to YouTube under FranLitz - so just check there if you are interested.

[johnstrike]

What a great video, you must be very proud!

I'll keep an eye on YouTube.

John

[brandonsmom]

Wow Francine,
How awesome.

Her arm looks great !!! you have done so much and yes, I do remember all the problems that you had with Maia, and school and camp and well, you know !!! You should be proud, very proud !!!

[Joanie]

I finally got a chance to watch the video. All I can say is WOW!!! Mazel Tov to Maia! Keep up the good work.

Joanie

[Zadynsmom]

I cried when I saw her playing, what an inspiration to all! I can see my little girl in yours when I watch it and hope and pray for all with BPI.
Zadyn's mom

[Mom2Michael]

What a wonderful video, Fran!! She looks awesome! Looks like a preety fun jam session, too!