United Brachial Plexus Network, Inc.

Hello, we just got back from Texas after the modquad. I have to say I am a little disappointed, things just didn't go the way I had pictured. Lots of trouble with the splint, they adjusted it 3 times but now we are backhome and it still isn't quite right. It tends to sit crooked on her, leaning toward the bad arm, by the end of the day it ends up underneath her other armpit. Any suggestions? We also got very minxed signals about what ROM to be doing the first 4 weeks. OT said to gently move arm up and down 10 times, range fingers,hand and elbow, Angel, Lisa's assistant said no ROM. Finally got hold of Lisa, after about 6 phone calls, messages etc, and she said what the OT said. Is this right? I could vent for about another page so I guess I should just get off the computer. The good news is, Dr. Shenaq said her injuring was mild, and she should not need any furthur surgery. I guess that is the important thing! Thanks

Hi Gina... I understand about your experience not being that great...we have had super great and not so super great experiences there...but I think of it this way - the thing that counts the most is what they do inside our children and I do trust all of the doctors there.

So about the splint... Maia's is splinted now and the thing that has always worked best for us is to make sure the fit in the armpit (of the affected arm) is perfect - that's the #1 goal - then we do the straps. We figured out a way to make it work for us and I show it on the mod quad splint page on Maia's site.

http://www.injurednewborn.com/maia/homepage.html

It worked well for us (may not for you, but it wouldn't hurt to give it a try) and is still working well for us with the capsulodesis splint.

Just do it slowly and get it tight and there should be no movement at all. The straps stretch very fast actually, so you'll just have to keep on adjusting where the placement is.

hope this helps,
francine

My daughter had the mod quad the week of thanksgiving and we still don't see any results. She actually lost what she had before surgery. The therapist says it because she was in the splint for so long. Hers wasn't the original sol splint. But we had so many problems with it and got so confused about what to do with it and how to make it fit right. We just got done with the aqua therapy and she can't do anything new. I really don't know what to do.

When the children are splinted for so long their muscles atrophy - it takes time for things to normalize. Sometimes you see results immediately and sometimes it takes rehab to get there. I remember thinking one year after Maia's rehab that wow - look what she has one year later! I remember thinking that it definitely took one year of rehab.

Nothing with this injury happens easily or quickly it seems. I think one of the biggest learnings we had and still battle is "patience".
Hope this helps you...

take care,
francine

btw - with Maia's capsulodesis surgery - we took the splint off and her arm was completely dead. But we're 6 weeks post splint off and she's probably at 90% of what she had before the surgery so it's coming back pretty fast now.... have faith