United Brachial Plexus Network, Inc.

Hi there!

I'm so glad you found this site, but so sorry that you have a need to find this site!

I'm Cherie, mom to Sarah who just turned 3, and one of the co-founders of the D/FW support group.

I know exactly what you mean about keeping your daughter from being active -- it's impossible! Sarah is exactly the same way.. Right after she had her last surgery, I walked into her bedroom, and she was jumping on her bed with a full upper-body splint on. I thought I was going to have a heart attack! I think one of the things that I have learned is that we cannot over-protect them. (Believe me, it's been such a hard lesson for me and my husband to learn!) We have to let them learn to compensate for their injury. It we spend all our time protecting them, they'll never learn that compensation. One of our therapists once told me that "Adaptability is 100% better than inability". They will adapt, and they will find (sometimes strange) ways of doing things for themselves!

Where are you located in the metroplex? We have lots of people in the area that are pretty active in the support group. I would love to answer any questions you might have... Let me know how we can help! Feel free to email me (chohertz@dfwbpi.com) and I'll give you my phone number to talk...

I'll look forward to hearing from you!

Sincerely,
Cherie Hohertz
D/FW BPI Support Group

Welecome,

We live in Austin, TX. My son has a bpi and is now 7 years old. He sounds very similar to your daughter. And at age 7 he has not slowed down a bit. He plays baseball, soccer, and last year took 11th place out of 57 boys in breastroke. He does compensate alot but our motto with him is if he feels he can do it we let him try. We have not allowed football or wrestling due to dr.s advise. He has had 3 surgeries (Dr. Laurent, Dr. Nath, and Dr. Shenaq all in Houston, TX). He has pretty good function but we do keep him active. He still goes to PT and OT but that is fun for him. The best thing for his shoulder has been swimming. He actually was scheduled for shoulder surgery before he started the swim team. He had tough practices every day for 1 hour (he loves swimming). After the swim team was over, the docs cancelled his surgery. They were amazed out the strength of his shoulder. They felt that he would loose function if proceeded with surgery. The winging is kind of normal for BPI kids. My son's shoulder appears dislocated but it is slightly seperated. Unfortunatly, in his case there is not a fix to that without loosing function. Since he is pain free and alot of function, he is not a candate for some of the shoulder surgeries. We do have him evaluated every 6 months and seek out multiple opinions. We also took him to the orthopedic hospital in Houston, TX. They are also worldly known. We wanted an "orthopedic" view and it was pretty consistent with the BPI specialists.

My son 's bpi is also in his left arm. I think he would have been left handed and as a result he uses his left as much as right. He can bat left and right handed - that is actually a plus for baseball . He also eats left handed with finger food but if really hungry will use right. So the natural tendency to the left has also helped him. SOme things they do have to adapt too, writing was not possible to do left, so he does write righthanded. It is sloppy though.. .

Hope this helps. I have be coming to this website for over 6 years and it has helped me tremendously. Keep asking questions...

Hi Jess, welcome aboard, it is really a great place to spend time when you feel good or bad

Thank you all for your input. I know this is going to be a long hard road, I am glad there are others we can talk to now. In the past we seemed isolated and that nobody else has this problem. I would never wish this on anybody but it is good to talk to people who have or are going through it. I really wish we would have found this site sooner.

Please note that Sariah does have therapy at our home twice a month and at another PT's home twice a month. We have received a lot of emails about getting her therapy and we are well into that. I was asking about strenghtening her shoulder because if you act like a zombie (both arms out in front of you) she is unable to bring her left to the 90 degree angle. We work with her everyday on stretching and strenghtening her arm just wondering if there was any one exercise that was really good for that. From all the feedback I believe we will put her into swimming very soon. She loves the water and splashing anyway. It is a busy time of year and if I do not get the chance again, please all of you have a very Merry Christmas and Blessed Holiday Season.