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Update on Maddy!!!

Posted: Thu Jan 23, 2003 3:26 pm
by madysmom
Hello !
I just wanted you all to know that my daughter who turned 2 months old today, is doing good, I think and I say this only because 1. this is new to us, we are learning alot daily and 2.I was told that any movement is good...but that it counts more when the child moves the affected arm against gravity. My daughter had been moving the fingers the hand and the shoulder alot better, it was just the fingers and she does this while lying on her side or sitting in her bouncer. Does this count?? I mean this is def improvment, right?? Well, listen to this yesterday she and I were spending some time and i was rubbing her arm and we were playing, its so fun now she started cooing and smiling, well....she lifted her armat the shoulder and bent it at the elbow to put it on her tummy, the shoulderwas not even on the bed she was on her side. I was thrilled!! We are talking back and forth w/ some hospitals that will view tapes of her, but I want to know if 2 months is to soon to view, still waiting to hear an answer on this, but wanted to share her improvements!! Thanks for listening!!!
Madysmom.Staci

Re: Update on Maddy!!!

Posted: Thu Jan 23, 2003 11:53 pm
by m&mmom
Any movement is a blessing!!!! I would send the tapes in on a monthly basis and make a couple appointments at some bpi clinics if any are close to you.
Cindy

Re: Update on Maddy!!!

Posted: Fri Jan 24, 2003 12:32 am
by CW1992
Yes any movement is good news! Congratulations. I hope she continues to improve and - and happy 2 month birthday!
Christy

Re: Update on Maddy!!!

Posted: Fri Jan 24, 2003 4:32 pm
by BobG
Staci,
I was in the same boat as you over 3 years ago. When my son was delivered he had no movement from the shoulder down. His hand was clenched in a tight fist. We didn't know a whole lot about his injury and how to proceed. We started seeing a orthopedic dr. who had some experience with BPI and should problems. His philosophy was "wait and see"; "too young for surgery" etc., We trusted his opinion, we certainly didn't know about this site and all the information that was available about BPI.
We were thrilled when one of Alex's fingers had slight movement. We did therepy and Early intervention. He gained back a little movement and now instead og being clenched his hand opened up. He still didn't have good movement, but his arm was alive. As he gained back a little more movement, I would try to tickle his arm (especially when he was sleeping) to see if he would move it. I wanted to see if his sense of feeling eas there. He did move his arm slightly at times when I did this. All the while I was wondering if (and how much) he was in actual pain. It didn't appear that he was in much, maybe because of the extent of the nerve damage. My main concern was "no pain." Little did I know that I should have been concerned abou a lot of additional things.
We probably should have been more aggressive and proactive about caring for his injury. We (and the orthopedic didn't quite explain this) didn't realize that there are certain indications and windows of opportunity in the care and treatment of the injury.
Maddy is just 2 months old and some info I have read (too late) says that with O-BPI's (Obstetric Brachial Plexus Injuries) a spontaneous recovery is possible anywhere in a 0 - 4 month window. Nerves regenerate at a rate of 1 cm per month, so recovery is very slow. Maddy still has a chance and keep in mind that each person's case is different.
What I found out too late is that if there isn't recovery and a muscle isn't innervated (or has a nerve growing and active in it) by 18 monthns, the muscle will become atrophied (limp and unusable) beyond fixing. The words I've read say "the muscle dies." A nerve transfer is the sugical option to address this problem (many people here call it their "primary surgery."
So...I'm happy that Maddy has some movement and I don't want to burst your bubble, but I just want you to be objective and realistic about where she is at and what may transpire from here. There are many great people on this board who are much more knowledgeable about these things than I am, so keep asking questions!
I wish you and Maddy the best during these difficult times!

Bob (father to Alex 3 1/2 Left-OBPI)