I just wanted to see if there are any bpi kids & families here in the Orange County area. We have been going through the motions of PT and visits to the specialists and I would love to get some feedback on local doctors, or just chat about our kids.
My son Garrett just turned 3 months today and we are still waiting for that bicep. Sadly! Getting ready to consider the next option.
I used to live in San Diego, they have a great support group there. Connie Cannon is the membership person and ubpn's own Cathy Canter was one of the co-founders of the group c_cannon@uscd.alumni.org is connie's e-mail address and cathy's is cathy@ubpn.org
Hi. I'm Kari. I don't live in Orange County, but I live in Santa Clara county and I have several friends who live in California with kids who have BPI. We've formed an e-mail support group, (for more than just people from Cali) and you can get great info. there on hospitals. Also, check out my website and see if it can give you any info. We see a doctor out of Standford Medical Center, Dr. Vincent Hentz. Really good doctor. He's about to do surgery on Caleb (Dec. 16).
We're in Santa Barbara, but go to LA to see a few different BPI specialists, my daughter had a tendon/muscle transfer two years ago at the age of three. Tuesday we're going to see yet another doctor to get his opinion on the capsoledisis (sp?) surgery.
Our son moved his arm for the 1st time about 1 inch off the table laying flat at 3-1/2 months of age. He now is 7 months and can raise his arm almost to his ear and bend his elbow. The only thing he can't do is suppinate(palm up)and his scapula is week. Hang in there it still could come back.
We live in Northern California and will see Vincent Hentz at Stanford.
I live in Apple Valley, CA. we are close to Barstow. We have been everywhere to have our daughter Bobbi checked and Loma Linda U.C.L.A. have both told us she is handicapped and deal with it. we finally went to Texas this October 29, and had Dr. Nath do the Mod-Quad on her we are still going through alot with recovery but we think we did the right thing. She has been a trooper through this all. More so than I who breaks down all the time. I hope you can find someone who will give you the correct advice on what and when to have surgeries or not done on your baby. We didnt and we also had alot of problems with insurance. Please E-mail me if you would like to talk or call me. I could always use a friend. This is so very hard to go through, especially when you are alone. Jennifer, Bobbi's mom. E-mail power@accex.net or 760-240-4132.
Thanks for your replies!! You have all offered such great moral support!! The family is moving next week so I'll try to catch up with everyone after the holiday.
Hope your little ones are doing great!! We have looked into CCS and are hoping to get the application done soon.
Bobbi
Getting ready to consider the next option.