United Brachial Plexus Network, Inc.

SOme of the "old timers" will remeber me. My oldest Daughter Rosalynn has a LOBPI and is now 10yrs old. I used to be very active on the boards, but them my youngest came along with congenital heart defects and a bucket full of other medical problems and I haven't had as much time (also the whole going w/o intermet in the house for 3 years didn't help any either). Well Dagny had her major heart surgery last month and came through with flying colors. At least hear I know many of you will understand when I say that the surgery doesn't "fix" her heart, but it makes it work a little better. Rosalynn is doing good in school and is very active in 4-H and Girl Scouts. I really feel though I have dropped the ball with giving her as much attention as she needs when it comes to her arm. Any advice for how to get her back on track? She is losing ROM with her affected arm. When we try to do exercises she complains of pain. Also she used to try really hard to do all the PE stuff, now she is constantly telling her gym teacher oh I can't do that because of my arm. I am in the process of trying to get an IEP back in place becasue they "lost" our 504 plan for a year and a half. Her classroom teachers knew what was going on and made accomidations, but the paperwork went missing and part of our plan was for PT consultation as needed in the gym classs, no paper work no PT consultation UggH!

Does she see a bp center? if so, then she could get an OT referral. I know my son's center recommends activities such as martial arts, tumbling, yoga, etc to keep bp kids' arms stretched and loose. Especially as the kids get older. My kiddo also loves Aquatic Therapy and we noticed a big change in his tightness (less) when we started. That heated water works wonders on him. That might be something an older child would enjoy too... just thoughts. It's great for strengthening too (we didn't know our town had a heated pool till he was older and so I sing from the rooftops about it... haha)! My son is only 3-1/2 and still thinks ROM exercises are a part of normal life and so does them because that's what we do (infact he tries to do them on my 10 mos. old, and my 2 year old insists I do ROM on him as well because he and his older brother are two peas in a pod).

I know centers do muscle/tendon surgeries on your daughter's age all the time... (if she hasn't had it already) do you think that'd be something that would benefit her? I know a 12 year old girl who had it done and was able to start playing volleyball a year later on her school's team... with lots of work and patience! My son had his muscle transferred and tendons released at 19 mos. old and after it, he fought us a lot less on ROM (because I think it hurt him less) and started using Lefty as a helper arm.

Sorry to hear about all your younger baby has to go through. I can't imagine how stretched you must feel! I hope you are able to jump through all the hurdles for her IEP without too much effort. Good luck to you!

My dear Cara,
With all the craft work,i.e.crocheting , knitting, that dear Rosalynn does for fun and for 4-H, maybe it tightens the hand & arm muscles.That's what happened to me. If it were just a small amount i would not mention it but I know how much she does do and it's alot to my Gramma mind. Definitely that pain when stretching and excercising arm and hand very well may be related ....just Gramma' C's "Musings" about it. Is the any thing like yoga or a particular martial art that might be a "Fun" activity that is also therapeutic excersize too that she can be enticed to try? At her age it has to be fun and have a friend do it with her. Perhaps talk with aanother 4-H Warrior Mom like you.
I love you all. HUGGZ all around.
Gramma Carolyn J
LOBPI/72++++
ps...Prayers Please for my leg surgery on this monday.