United Brachial Plexus Network, Inc.

Hi Tina and Francine I want to said was a pleasure for me meet both of you in person. We do not have enough time to share and was a critical day for everybody. Both of you were wonderful persons and yours husbands too. How are the girls doing? I hope everything is going well with the girls. Francine: Do Maia feel better with the position of the new cast done at the hospital? Sorry, I had problems with the computer. We sent it to the warranty service. It took almost two weeks.
Jocey is getting me crazy, she is asking for the photos of your digital camera. She said each time I turned on the computer Mami when I will see the computer photos from Maia's mom camera?
Jocey's surgery will be January 21. The EMG don't show enough comparing it with the last one done two years ago. That means the only thing could help her at this point will be tendons and muscle transfers. You saw her arm and for be a total avulsion from c5 to t1 she is doing wonderful. We do not know how to pay for all what the Drs has been doing for our Pretty Butterfly.

We are very concern with the scars. I has been explaining her what will happen and also Dr. Klebuc was talking with her and he told her after this surgery she will be able to hold a cup of water and when she grow up she will be able to turn on the car with the help of both arms. You saw her, she think is a teen with only five years. But she told us no, "I do not want any more surgeries". Maybe could be she still remembering her last surgery who was four months ago.
I will like she meet another kids of her age with the muscle transfer done to the wrist it will be more easy to prepare her. I called Angel and I explained her what is going on. She told me will contact another parents with kids who had the surgery done and will give them our phone number to contact us.
I do not know how to explain her about the scars on her leg and arm after this surgery. They will remove a thin piece of skin from her leg to cover the muscle. additional to two other scars on her leg too for remove the muscle. On her hand she will have one scar over the inside side of the wrist and the hole near to the inside side of the elbow. Dr. Klebuc told us will do a plastic surgery around six month after this surgery to close the hole where they will fallow up the grow of the muscle implanted.
I do not know how will be the psychological impact from this surgery on her behavior. Around one year ago she was hiding her arm. I asked her why she did it? Because she have a beautiful arm. We though maybe was comments from other kids at school or all the adults you found each time you go out from home. Well we succeed that step talking and explaining to her how she could teach to other persons who do not know about this injury. Now when somebody ask her if she fall down or said those incredible comments she answer them explaining what happened to her arm. Now she enjoy to see them like ignorant persons who have to learn a little bit. Also she said when grow up want to be a doctor to help other kids. She always talk and think like an adult. That is why the Drs decide to do this surgery now. They usually do it when kids are six years or older. Now I'm scare about how she will feel and how will be her behavior. Please help me. Do you know about any other psychologist who work with braquial plexus kids additional to us the moms who have brachial plexus kids Thanks, Ivelisse

SORRY ANSWER THE OTHER POST WHO HAVE THE SAME SUBJECT. I DID A MISTAKE.

Ivelisse - my heart goes out to you. I understand completely where Jocey is coming from.

All the pictures are up and on the website - so being that you posted - this means your computer is back?

www.injurednewborn.com/maia/homepage.html

look at the capsulodesis section - the hospital part and then look at the TCH section....I think Jocey's picture with the ballerinas is there. You daughter is SO beautiful - she IS like a little butterfly! Maia sleeps with her unicorn - she loves it especialy because there are sparkles on its horn!

I think a psychologist is a good idea - we are looking now for one, too.... do you think that TCH has someone right there that would be helpful? I'd call down there and see what they thought. You live in Houston right?

I will pray for all of you. I wish we lived more close by! Merry Christmas to you, your husband and your sweet little girls!!

big hugs,
francine

I like the way your daughter understands other people are just ignorant about this and they need to learn a little bit
information exchange would be the answer to so many of our world's problems-
There are parents who choose not to have the surgeries because their child feels the same as your Jocey- Not many, but there are a few-
if you would like to speak to some parents with older children who have chosen not to have a surgery done because they thought they couldnt do another surgery psychologically- contact me- Ill put you in touch- having a surgery is always a choice.
- I want to clarify that I think sometimes the introduction of stress and trauma into a child's life -has wonderful outcomes from the child learning to cope and meet the challenges-
Just because there is stress and trauma does not mean it will have an overall negative effect-
but I think your concern is valid and you are doing the right thing to look for ways to help Jocey deal with the challenges of the extra trauma-
blessings of wonderful recovery !

We too understand your concern about Jocey not wanting this surgery. Is it possible to wait until she is a little older to see if she chooses to change her mind or perhaps once she has a chance to talk with other kids and see how they felt about the gains (or losses, physically and emotionally) of the surgery(ies)? Or even kids that never had the chance to have surgery , even if they did need it. I don't see how we can expect a child that didn't need surgery to comprehend what the ones that need them are going through. Have you had the doctors explain the whole thing to her on her level of understanding? Do you know what it is about the surgery she doesn't want--the pain, the splinting, the scars? Maybe she just wants a short break. These kids seem to be a little more mature than others their ages and maybe she just needs to "do" some research herself. Our family will be thinking of you with many prayers that whatever decision is made will be in her best interest.