United Brachial Plexus Network, Inc.

Jill,

Of course. The recovery is hard, but it is well worth it. Just know you are doing the very BEST thng for your child. Let me know how things went! Feel free to e-mail me at my personal address.

Take care,
Lauren

Hi Everyone!

My son Mark had the TT surgery in Aug of 2006...he 7 months post op and doing great. He's playing baseball and basketball. He was snowboarding a month ago and just being a normal boy. Its so amazing to watch them recover so quickly. As a mom I worry should he be playing? hmmmm I decided that to smother him and constantly tell hem to be careful would drive him nuts...so even though I worry everytime he snowboards, and slides into a base I take a deep breath and he laughs and gives me a great big smile...Oh and one more thing. ( remember after the splint comes off during the day in 6 weeks your child's arm may be limp and week. It's normal! I was a nervous wreak but Dr. Nath explained that the arm was immobilized for 6 weeks and the strength will return...he was right! Mark has been improving everyday.....God Bless and good luck!!!!!

Hello All,

Really need your support. My daughter Skylar was born w/ a BPI and we have been going to therapy since she was 6 weeks old, she is now 3years old. She has had great return with both her muscle and nerve, but she still has an elevated scalpula. We went to see Dr. Nath at one of his satellite clinics this past weekend and his reccomendation was TT as he said therapy will never give 100% return with this injury in terms of her bone.

I know it is the right thing for her thinking long-term, but I can't help but feel completly helpless and as I reflect back wonder if their was anything I could've done so that my baby would not have to face this.

I've been on edge since we spoke with Dr. Nath and can't stop crying, I have a really good support base, but they can't truly understand the last 3 years..Don't get me wrong, again she has had great return and to the eye of someone who is not familiar with BP, they probably couldn't see anything right off, and her therapy sessions are playtime for her she loves it.

Its just as her mother, I feel that the only thing she should be worried about is loving life and not the discomfort of all that this surgery will bring.

I do have a sense of peace that this is the right thing for her and know that our faith will bring positive results, I'm just.....well I guess I'm just a mother..

Thanks for listening..
Kim

HELLO,
PLEASE DON'T EVER EVER THINK THAT THIS IS YOUR FAULT, IT'S NOT..........
IT'S HARD ON A PARENT TO COPE WITH OUR CHILDREN BEING HURT.
MY SON HAS HAD 7 SURGERIES,I HAVE SEEN IMPROVEMENT IN THEM ALL SOME NO AS MUCH AS THE OTHERS...... MIKEY JUST HAD TT,TO SOON TO SEE OUTCOME YET....MIKEY IS ALMOST SEVEN AND THAT IS ALL HE KNOWS DOCS,PT,OT.....HE HAS 60 TO 65% AND THATS HIS OVER ALL...IT'S HARD ON OUR CHILDREN AS WELL BUT IN THE END WE WILL BE THANKED FOR IT.....
I WOULD GET ADVICE FROM ANYONE WHO WANTED TO GIVE IT AND IT'S UP TO YOU ON WHAT YOU DO WITH IT.I WILL SAY THAT I THINK THE WORLD OF DOCTOR NATH AND HE IS A WONDERFUL DOCTOR... I JUST GOT HIS BOOK IN THE MAIL TODAY NOT HAD A CHANCE TO READ IT WITH 3 KIDS....
YOUR FEELINGS ARE NORMAL AND YES YOUR JUST A WONDERFUL CARING MOTHER... IM SURE WHAT EVER YOU DECIDE IT WILL BE FINE.
I WILL KEEP YOU AND YOUR FAMILY IN MY PRAYERS.
BEST OF LUCK TO YOU AND IF I CAN HELP PLEASE LET ME KNOW
THANKS KATHY

You already have helped more than you know. Thank You. I feel your strenght of endurance as I read your response. Kathy you are nothing short of amazing, and because of your story, I truly know that it will all be ok. I just ordered his book last night, so hopefully I will get it by the weekend. Did Dr. Nath perform all of Mikey's surgeries? How did you explain to him the 1st time about what was to come?

Kim, I feel your words as a mother, I really. WE live in Zion, Illinois and my son has had 2 surgeries with Dr. Nath. Both when he was little so I cannot help with your question. But did you know that there is a support group in Chicago?

www.chicagobpi.com

they are a wonderful group of people....if you aren't already involved....check them out. Take care GAYLE mom of Brandon 8 1/2 ROBPI

HELLO KIM,
HOPE YOUR DOING BETTER!!!!!!!!
MIKEY IS DOING OKAY. STILL TO SOON TO TELL ABOUT THE RESULTS OF THE TT..... HE WAS JUST A BABY WHEN HE HAD HIS FIRST SURGERY SO I REALLY COULDN'T TELL HIM MUCH, HE HAS HAD JUST ABOUT 1 SURGERY A YEAR, NOW THAT HE HAS GOTTEN OLDER I FIND IT TO BE A LITTLE HARDER TO HOLD IT TOGETHER. HE'S ABLE TO TALK NOW SO IT JUST BREAKS MY HEART WHEN HE SAYS SOME OF THE THINGS THAT HE SAYS... HE HAD TO GO TO THE DOCTOR TODAY, HE GOT IN THE CAR AND SAID MOMMY WHERE ARE WE GOING I TOLD HIM TO SEE HIS DOCTOR, HE SAID MOMMY I JUST WISH ALL THIS DOCTOR STUFF WAS OVER WITH I DON'T WANT TO GO SEE THE DOCTOR ANYMORE.... I FELT SO HELPLESS FOR HIM, BUT IF YOU HAVE A GREAT DOCTOR THEY CAN HELP MAKE FUN, THAT'S VERY IMPORTANT FOR OUR CHILDREN SINCE THAT IS ALL THEY KNOW.... MIKEY IS SO USED TO IT NOW AND HE KNOWS WHAT TO EXPECT MOST OF THE TIME.....
HE'S GOT SO MANY OTHER HEALTH PROMBLEMS AS WELL THAT IT'S GETTING TO BE SO OVER WHELMING FOR HIM. IT'S STARTING TO SHOW IN SCHOOL AND IN OTHER WAYS TOO.
I HAVE 2 OTHER KIDS THAT NEED ME AS WELL BUT I FEEL LIKE THAT THEY DON'T GET MUCH OF ME BECAUSE I STAY SO BUSY WITH 2 JOBS PLUS MIKEY, PT, DOCTORS, AND INS COMPANY......
IT'S A PRETTY HARD LOAD TO CARRY BUT WITH GOD BLESSINGS IM DOING IT!!!!!!!!!!!!! ANYONE CAN SAY THERE A MOM BUT, IT'S OUR CHILDREN WHO MAKE US THE GREASTEST AND PROUDEST MOMMY IN THE WORLD!!!!!!!!!!! IT MAKES MY HEART SING WHEN MY KIDS HUG MY NECK AND TELL ME THEY LOVE ME, THE HOMEMADE CARDS,AND THE CUTEST SMILES... THAT'S WHAT KEEPS ME GOING.... I KNOW THAT IT WILL YOU TOO....
DR.NATH PERFORMED 6 OF MIKEY'S AND SHEANQ DID 1... BUT IT WAS A GROUP THING.
KEEP YOUR HEAD UP HIGH AND HEART OPEN EVERYTHING WILL WORK IT SELF OUT..
BEST OF LUCK IM HERE IF YOU NEED ME!!!!!!!!!!
PS SORRING FOR THE MISSPELLING WAS IN A HURRY
THANKS KATHY

Thank you for the support group information Gayle and just for understanding. I will definitly look into the support group.

Doing a lot better Kathy. It helps to have dialog with phenominal parents with phenominal children in the same situation. You can explain it over and over again but there is nothing like someone being able to completly relate. I just think that your so amazing...let me retract that..that God is so amazing that he is giving you the strength and endurance to hold on and be faithful through all that you bare. Nothing short of inspiring...thank you for answering my cry for help.

I just received the information to get the 3D CT Scan done at Childrens Memorial here in Chicago so they can forward the official results over to Dr. Nath and I guess then the process begins..

THANKS KIM!!!!!!!!!!!!
KEEP YOUR FINGERS CROSSED THE 3D SCAN WILL TELL ALL....
DR.NATH HAS SAID THAT MIKEY NEEDED SURGERY BEFORE AT AN OFFICE VISIT THEN ORDERED THE SCAN AFTER LOOKING AT IT NOT AS BAD AS HE THOUGHT AND SAID NO SURGERY NEEDED.
I'LL KEEP THEM CROSSED AS WELL..... BEST OF LUCK
KATHY

NOTE:I WOULD GET THEM TO GIVE YOU A CD OF THE SCAN AND MAIL IT YOURSELF... HE WILL GET IT ALOT FASTER, I GOT 2 COPIES MADE MAILED TO NATH AND KEPT THE OTHER AND LOOKED AT IT ON MY COMPUTER,IT'S PRETTY NEAT TO SEE IT FOR YOUR SELF, ALSO I LET MIKEY LOOK AND I WAS ABLE TO EXPLAIN IT BETTER.....