United Brachial Plexus Network, Inc.

Sometimes the bad days start to outnumber the good. I try to remain positive and happy for our daughter, but lately, it's becoming more difficult. Sidney had her nerve graft surgery in March and we were extremely hopeful when we began to see improvement in April and May. However, her scapula is winging more and her elbow is becoming more tight by the day. I'm terrified of the world out there that is going to look at her differently and whisper behind her back as she grows older. I want to keep her in the safe little bubble of our home so she doesn't have to feel different. I wonder if the pain and anguish I feel for her and for what happened will begin to diminish because it's starting to take over my life. It's all I think about in between the PT visits, neurosurgeon visits, and daily life. I've never felt such hatred for someone as I do for the doctor that hurt her. We're doing everything we know to do. Keeping up on appointments and therapy and proceeding with a lawsuit that will hopefully benefit Sid. However, the guilt and pain is still not subsiding. What happens when the trial is over and perhaps the verdict is in the doctor's favor. How will I feel then? I'm enjoying Sid's growth and development with guarded hope that this injury won't make a difference in the long run, but I think I know somewhere in my heart that it matters tremendously. How do you all get through this day to day. Especially people whose children are now in school, in the "tween" phase, and so on. When does the pain begin to melt, because I need it to so desperately. Sorry for the ramblings. I only share it with you all because I know you are the only ones who will understand. Thanks for listening.

Amy,

My advice is the STRETCH STRETCH STRETCH!! As bad as the winging scapula and tightening elbow are, they are signs of increasing innervation and are a GOOD sign. These newly tightened muscles demand a lot of special attention right now!

NOW is the time to "train her to relax" those newly-innervated muscles. Think of stretches as relaxation training - don't just crank against resistance to get her to let her elbow out or stretch around into midline, but put her in a moderate stretch into those positions and then massage and whatever else you can do to encourage her to relax the muscles in that elongated posture. Then try to get her to flex the muscles from that extended position, so she comes "back in" from the end of her range. To do this successfully you have to either support her weakened muscles or try to put her in positions where she can work them through their full range without taxing them overly much. For instance, we worked on strengthening Joshua's newly innervating biceps (which were also becoming contracted as these two things often go together) by holding him standing at the edge of the couch, placing things just at the end of his reach at the back of the couch, and only allowing him to use his left (LBPI) arm to get them. That way, he had to fully extend his arm to get the toy/grape/whatever and then contract his bicep from this fully extended position to get it to his mouth. BUT he had the couch to support the weight of his arm so his weak biceps had a chance to work through their full range.

The winging is most likely a sign of EXternal rotators getting innervated but they are fighting internal rotators which are stronger. So the internal rotators pull the shoulder forward and around, but the external rotators stay "on" so the scapula comes along, too.

So make sure you stretch in all directions: external rotation, internal, abduction, adduction, arm out to the side, arm across the chest... everything! When innervation is first kicking in is THE time for contractures to start - the muscles are getting enough innervation to begin to function, but aren't strong enough to function over their whole range so they tend to "stay on" in order to be useful at all. Your goal is to teach all her newly innervated muscles to "turn off" and also to try to devise "exercises" (like the couch one described above) to help her learn to contract from a fully extended position so her muscles will gain strength over their full range and not become contracted.

Hang in there... this is an exciting time and the time when your stretching and muscle "training" can have the most impact. It is exciting but scary, too!

Kate

WAHT SHE SAID AND THIS
GO TO A THERAPIST I HAVE HATE STILL AND I MEAN HATE /FOR U KNOW WHO/AND I AM NOT AFFRAID TO SAY THAT WORD. I HAVE BEEN TO A THERAPIST BUT NOW I HAVE NO INSURANCE. BUT, IT REALLY HELPS. I AM IN MY 4TH YEAR AND I WISH I COULD SAY IT IS ALL BETTER. I HAVE NEVER HEARD OF AN INJUY THAT PULLS ON THE HEART STRIRINGS AS THIS ONE. EVERY THING I HAVE ENCOUNTERED IS A BATTLE AND I MEAN A FIGHT. I FEEL LIKE I HAVE AGED TEN YEARS AND I AM ONLY 29. THERAPY CAN ONLY DO SO MUCH TOO. AT SOME POINT ONE HAS TO MAKE A DECISION ON WHAT NEXT. AND BOY OH BOY WHAT ANOTHER BATTLE THAT IS. THE ONLY GOOD THING IS THAT U HAVE A WONDERFUL CHILD AND EVERYONE GETS MADE FUN OF IN SCHOOL I KNOW I HAD RED HAIR SO I WAS DIFFERENT. BUT, IT WILL ONLY MAKE U STRONGER! EMAIL ME IF U WANT I WILL SHARE MY STORY IN PRIVATE MSHATRAW@AOL.COM

Amy, I can not help with the parental pain as I am still trying to find a way to help my parents get through their pain. I can tell you though that Sid will grow to be one of the strongest women you know!!! You wont have to worry about her, we are quite independant and will find ways to do things.
She may get teased in school but you will have to let the protective bubble pop! Just be there to support her during the rough times and enjoy the good times! In my tween years as well as high school, I didnt fit in as well as some of the other kids but I made great friends wit my teachers and I still talk to all of them! Now in college I am doing great! Its a whole new world, I have a second chance to make great friends and this time some of them are my age, lol.

Again, some people may look and whisper but those are just ways of weeding out the ones we dont want to waste our time on. If people cant accept you for who you are and whats in your heart they are not worth your time, thats the way I look at it now, and it seems to be working for me!
Hope that helps!
Hugs,
Amy 20 years old ROBPI from MN

Amy:
Travelling this road as a parent is truly a roller coaster ride. It seems to be okay and then...weeeeee... there comes another drop. But I have 4 kids and it can be like that with ALL of them.

As for the trial: I have said it before and I will say it again, DO NOT look for "closure" in a trial. You will not find it. The trial is a legal course of action. That is all. If you win, great. If you don't, move on. The money you win will not make anything "better". It provides for your daughter's care.

Closure or anything else you want to call it, comes from within. It comes over time, some take longer than others, and it comes with a true understanding that you are not at fault. Some people find help in religion, some in a therapist. Some just come to it on their own.

As for the teasing and the bubble... here's a newsflash: every kid is different. Kids get pulled out of class for speech, ot, resource room, you name it. So there isn't a guarantee that kids will make fun of your child. Kids are curious, and so they might ask questions. We have practiced these possible questions and their potential answers for years. We have taught Juliana to stand up for herself not only with kids, but with adults too. What we have really tried to do is raise her as a kid who happens to have an issue with her arm. We treat her like our other kids. She takes sports, swims, puts away her laundry, clears her plate from the table. You name it. We have shown her and told her that she can accomplish anything. And so she does.

I asked her once if kids have made fun of her because of her arm. She said that they sometimes ask her why she runs with her arm that way (her is extended), but noone has mimicked her or made a nasty comment.

Once the kids get into school, I think it gets easier to see that they will be okay. These first few years, when you are snowed under by ot/pt/alternative therapies, doc visits, surgery or no surgery... it is so overwhelming. I can close my eyes and remember a day...it was snowing and Juliana had therapy at a center. I had to pick up my big kids from school, drive to therapy. Julie had fallen asleep, and now I have to wake her and drag these three other kids into the building for 90 minutes...no playdates for them...I remember getting out of the car and slamming the door shut and saying out loud "I don't want to do this anymore." And then just doing it. Hating it. I know how you feel. But please, trust me, it gets better if you let it. Live for these early times. The kids are so cute. I never really saw Juliana's cuteness, I just saw her arm. Now, when she is a pain in the butt, I have to try to see her cuteness!

good luck,
claudia

Amy,
There isn't a whole lot that I can add from what claudia said and others have replied, I echo their sentiments.

I understand your feelings towards the doctor completely. I know for a fact that the doctor we sued has hurt other children and patients. We went to trial on our case and heard his lies, heard their experts' lies and the jury still came back with a verdict in his favor. We actually appealed because I felt the judge made a grave mistake in his instructions to the jury and we were successful on appeal, the appellate court reversed the judge completely and granted us a new trial. But, I have to agree with claudia...do not look for closure in a trial, having been through it once and now going for a second time! When we lost I couldn't help but think..this doesn't feel right...ultimately, you have to do what you feel is best for your daughter. As others have said...things WILL get better.

I'm bumping up my post that has our appellate decision in it for you. Even though it is a New York case..you should pass it along to your attorney...it might help in some way.

On the bright side...I know my son is a better and more sensitive person because of all those therapy sessions with other children with disabilities that he befriended as a child.

Thank you all for your responses, including the couch trick, I plan to try in just a minute. I'm accepting the roller coaster, just getting sick on the ride. I love my daughter and have the best intentions to make her strong, like Amy. I can only hope I do a good job. Thanks for being there guys, I appreciate it.

I just wanted to add some encouraging words....my daughter Cassidy had her nerve graph surgery in February and we have yet to see very much improvement...some but not as much as I was hoping for. I know the torment your feeling and I myself have good days and bad. I think that we can raise these kids to rise above this disability...it does not define them! There will be hard days to come but our girls are going to be fighters and they will only get stronger....keep the faith!
Love Dawn
mom to Cassidy 14 months
ROBPI