United Brachial Plexus Network, Inc.

Beautiful, John!

Thank you.

Peggy

John,

I am sitting here reading your message with tears flowing. Thank you so much for your kind words. Every time my daughter complains of having to do her exercises it breaks my heart, but I hold the tears and push on, knowing that in the long run this is what she needs. It gets hard sometimes to look at the big picture when you are so stuck in the daily grind. We will continue and we will have good days and bad days, but she will know that we love her with our entire being and that she is special to us not because of her injury, but because she is our daughter.

Hello MacKenzie's Mom,
I second and affirm everything John said. I live in Tacoma and soon we'll try to have a Starbuck's Coffee
Klatch of all of us living in the Puget Sound area,somewhere on the I-5 corridor. Until then stay strong and come to the message boards and vent anytime. I did not find UBPN until 2004 and only had a name for our injury the year before at age 65, so I really was overwhelmed with love,support and information. It has been very healing, to say the least. Also, there is no dumb question to ask on any of the message boards. We all are in this together. FYI, I learn sooo much from the teens! We are never too old to learn & I guess I'm living proof of that.
God bless you and all moms!
Hugs all around,
Carolyn J
Adult LOBPI,age 67 & proud of it!

John,

I just had to share that your post really touched me and it was worded so beautifully. I have heard of other mothers in their 70's & 80's who are also easily brought to tears by this unnecessary injury and the struggles it brings. I know my heart will never be the same because of it, but I certainly do my best and hope the healing continues. Boy, are you sooooo right....our children will probably do as well as we do. I have copied your post and will be saving it for years to come. THANK YOU.

Lisa

Hello, KC. Welcome to the board. I'm glad that you found us, but sorry that you had to be here. I ahve a daughter, Nicole, who is almost 6 1/2 y.o. She has had four surgeries (all done at TX Children's Hospital) and lots of PT / OT / alternative therapies. We're actually taking a major cutback in "formal" PT / OT right now to once a month. It's the only time we've ever cut it back so much except for post-surgery times. I think that my daughter needs a bit of a break too. I'm hoping to get enough "alternative" therapy from other activities like dance, Kindermusik, and therapeutic horseback riding, etc. Anyway, to anser your question, 8 y.o. is not too late for surgery. Primary nerve surgery is ideally done w/in ~6 months post-injury, but there are secondary surgeries that can be done many years later (although often there might be better outcomes for younger ages). I would definitely consider getting another opinion or two. Some drs. do video evaluations. I know that Dr. Nath does them. You can get more info. on his site: http://www.drnathbrachialplexus.com/ .

You should keep in mind though that if your daughter has surgery, following a post-op period of being in a splint, often intensive PT/OT is recommended for a while. It's actually good also to do some therapy before surgery to strengthen the muscles as much as possible beforehand. I thought I'd mention that since you're on a therapy break. I don't know how long of a break you think you'll take, but you'll have to figure all that into the picture if / when you consider surgery.

I thought I'd also mention that I've found that what helps is to do "alternative" therapy. Nicole has done things like dance (ballet/tap and will try Irish Step Dancing this year), Kindermusik, Therapeutic Horseback Riding, and skiing as some of her therapy. She knows the h/b riding is therapy, but doesn't know my hidden agenda of the other activities :O) I think that breaks are good too b/c the way I see it is that they have their whole lives to do therapy b/c they'll need some therapy at some frequency ongoing through the years, but they're only children for just a little while. Well, I've rambled enough. Feel free to e-mail me if you'd like.

~Tina, bpmom@comcast.net, mom to Nicole (6 y.o. w/LOBPI) & Joshua (1 y.o. w/NOBPI)

P.S. To echo everyone else, this is NOT your fault....

~Tina

John, thanks for sharing. Your reply got me emotional. It's so touching. I think that when I'm older, I'll be asking Nicole "Did I do TOO MUCH?" I know things were much different as far as treatment when you were a child. Niocle has had four surgeries and lots of PT / OT, etc. I also want her to enjoy being a child though and just having fun so we've recently made some major cutbacks in therapy for now anyway. Take care.

~Tina

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Hi, I am just writing to welcome you into our group

but am so sorry that it is because of this injury.

Others have given you good information but I want to

repeat some of it. The most important thing that you

ccan do is having a BP doctor see your child. As

stated before ,Some do video evaluations via the

mail. These docs might be able to help. Also, keep

telling yourself that the injury is not your fault.

We are all here for you. No question is stupid so ask

away and we'll all do our best to help. Best wishes,

Lou

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