1st timers...big decisions

[admin]

This is my first time writing...I found this website, this hope of what is happening in Texas, only one month ago. My daughter, Molly, has ROBPI..10 pounder...you all know the story....she can get her hand up to her ear...she's getting tighter and tighter as she grows. She's awesome, has never let this stop her from anything...she plays sports, water skis, etc...all with her left arm. We've always been told by her PT's and Doctors here in California how "great she's doing and well she's compensating". In October, by a miracle chance meeting set up by her PT, Molly got to meet Dr. Karen Pape from Canada. She took one look at Molly and said, "Go to Texas right now...they can help her". We checked with the head of orthopaedics at UCSF and at Children's...they said, "No..as much as they wanted to say there was hope for even some gain...it is not possible". So of course, we went to Houston...we got back last week. In fact, I just read a posting from "Joe" who had surgery with Nath. We saw Nath that Tuesday morning after his surgery...he was telling us about this great case he had that morning on an adult male...ironic...so glad to hear he's doing well. We also saw Dr. Shenaq at Texas Children's and we were very impressed. Both Doctors proposed the exact same surgery (releasing those tight muscles under her arm)..both were concerned about how much deltoid strength she had, and both said they could get some nice improvement..(It's so hard to even let myself imagine..)even though she is a little older than the ideal patient. Like so many of the postings I've read, she would like to do her own hair and be able to use both arms in basketball. This is beyond a miracle for our family...we never knew there was even a remote possibility of improvment. It's so scary because I happen to be a surgical assistant and my husband a paramedic....and our doctors here, supposedly the best of the best, say (and I quote) "These doctor's in Texas are building an empire on families broken hearts...you will believe they can help because you and all these other people, want it more than anything"...With that being said, we have gone with our gut feeling and scheduled her surgery on January 31st!!! I'm crying so much right now that I can't see the keyboard. OK, so here is where I look to all of you for your expertise...we liked both Doctor's...we decided to go with Shenaq....any feed back on this decision? Has anyone gone through this recently-especially with older children? Molly is so ready...she gets the big picture...she understands what she's starting...She is an 8th grader, who has a 4.0, she is her class president..I only brag about her because she is so strong mentally, so much stronger that I would be. She is right handed, so I'm not sure how we'll go about school...as of now, she still wants to go...knowing she'll be the statue of liberty for a couple months (they said her splint would be on a little longer because she is so tight). Forgive me for rambling, as all of you know, to talk about this for the first time to people who know exactly what you're talking about is completely unbelievable. Any input is so appreciated. To not feel alone with this anymore, is already more than we've ever dreamed of.

[Tanya in NY]

Dear Katie and Molly,
Wow, you gave me goosebumps. The passion and love you express for your daughter Katie is wonderful. How lucky she is to have a Mom like you.

I congratulate you for looking for the best care for your daughter. Unfortunately, there is a lot of misinformation out there about treatment for children, but I'm glad you've decided to pursue options.

I do not have any personal interaction with either of these doctors, so I cannot offer you an opinion on that unfortunatley.

What I can offer you is support and encouragement. Hang in there and yes, go with your gut. Mother's do know what's best for their children when they trust their instincts.

Good luck to you both.

Tanya in NY

[admin]

Katie, Hi! My name is Priscilla. I have a 12 year old son, James that has a traumatic injury from an ATV accident last November, right arm, and he is right hand dominant. After a couple of opinions and rivers of tears, we decided to go with Dr. Shenaq. James just had his first surgery in April of this year. We found Dr. Shenaq to be a very professional and compassionate Dr. I wish your daughter all the best!

[Carolyn J]

Hello Katie and Molly,Welcome. Yes most of us adults have recieved alot of untruths about our BPI or our children. I fought for my son for 30 yrs to get what he needed(not BPI);very few people believed my gut instincts. A mothers instincts are the truest ones. Of course, I never knew there was hope for me,a LOBPI, until I found this UBPN network just last April '04.
There are a number of teens who share on this Board too, so I hope Molly will too. Keep us informed and keep coming back.
Love & prayers for your family.
Carolyn J(66 & proud of it!)

[admin]

Katie,

I'm LOBPI, i'm 28yrs old. I have seen many doctors and specialists since birth, and was always told that "surgery is not a good idea" .I had surgery twice when i was your daughter's age. The mod quad surgery has been my 3rd on my affected arm to date. There are 2 other surgeries that Dr. Nath can perform that can and i think will help my affected arm. I was told that these surgeries will never make my arm 100%. I am willing to accept that fact. I can see results and i'm not even a week post-op! I think what you are doing is right. Do a lot of research and go with your gut feelings. You are in good hands in Texas-These doctors are dedicated. Good Luck! -Joe arc76@snip.net