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Re: New Roll Call

Posted: Sat May 21, 2005 3:03 pm
by shellybell03
hi im michele, mom to gabriele (rbpi, already had nerve trans t1-t7 affected as well as phrenic nerve, has elevated diaphram,leg length discrepency,horners syndrome,all this and she was my third child at 36 weeks,9lbs 50z little sister to julia- 5yrs old,9lbs 5oz also but no injury and Andrew 17 years old 7 lbs 13 oz. She is the fiestist little child i have ever seen nothing and i mean nothing stops her!!!!!!!She is truly amazing just as her surgeon (Dr.Waters)is.
we are back up to boston in sept for mri then january will be 2nd surgery. sorry i went on but thats us, i thank god there is an organization like this, i have felt so alone this past year, no one has any clue what this is or what these tiny kids go through. thanks for letting me ramble!!!
Michele

Re: New Roll Call

Posted: Sat May 21, 2005 3:05 pm
by shellybell03
p.s. gabby is 17 months old.

Re: New Roll Call

Posted: Sat May 21, 2005 6:15 pm
by sydsmom
My name is Deanna. My daughter Sydney is 6 1/2 years old and has a L0BPI. She had Mod Quad in Texas almost 3 years ago. We live in Cincinnati.

Re: New Roll Call

Posted: Sat May 21, 2005 6:32 pm
by admin
Hi all!
My name is Kim Lane- AKA Kimba..:>
My beautiful 8 yr old daughter Dani has OBPI affecting her right arm.- but not her will!
She has had 2 surgeries, one by Dr Cynthia Verchere- neurosurgeon, and the other by Dr Chris Reilly, orthopedic surgeon, at British Columbia's Children's Hospital. We also did our physio at home and in hosp visits with Doria Bellows- PT...The Brachial Plexus team at BC's Children's is becoming a force to be reckoned with in Canada..I can say that with pride. I had taken Dani at 10 months to see the Dr's at Toronto's Sick Children's Hosp as I was advised they were the best in Canada...They advised me to to go home and put my daughter into the hands of Dr Verchere & the team here. I can say that I did check out MANY options. I had all the great advice here, not to mention being VERY tenacious! I took Dani to see Dr Nath in Texas, and after her 1st surgery was done, a couple of years went by and it became obvious that Dani would need a " mod Quad" as it's called. We then used that trip to see an orthopedic specialist in LA and also take our girl to Disney Land !! Again, we were advised to go home to BC and see Dr Reilly for her second surgery...Again, no regrets! Dani is doing really well. She plays ball, and rides horses regularly. I will always be afraid that she may need to have another operation, or that she'll injure her right arm somehow and cause dis-repair to the work done to correct the damage incurred at birth, but I decided a couple years ago, that I couldn't live that way anymore. She will do what ever she can. She is not only more capable than I ever dared imagine when she was a baby...but she's my HERO. I was a bit of a wild child before I had her. I am going on 35 yrs old now, had her when I was 27...The stark reality of having to not only be a good Mom, but a GREAT one was the only option. I may have been all over the map before she came along, but I am so proud of the way I parent her, have made SCARY decisions ( as you ALL can relate to big time) and have tried to maintain my sanity through out! I did disappear from these boards a couple years for self preservation..and pulled back from the community in general. It's all good, I finally feel the peace that I have sought so hard for. I want to convey my thanks to those who advised me ( us) over the years, and also to say hello to those I don't recognize on the boards. We are really all in this together. There aren't any other people that can truly understand the wall of confusion that accompanies this injury,except for those who are touched in some way by it.
If anyone wants to contact me, feel free to email me at flygirlkd@yahoo.com
Take care...Kimba,Dani & Benito ( my wonderful fiancee)
PS..sorry to be so long winded, but I just went with it! :>

Re: New Roll Call

Posted: Sat May 21, 2005 9:11 pm
by admin
Mollie and Darrell Buchanan
We have a 5 week old daughter Chloe with ROBPI

Re: New Roll Call

Posted: Sat May 21, 2005 11:18 pm
by evee
Hi !

I'm Evee mother to Christian (2 yrs) LBPP. We are from San Antonio, TX.

Re: New Roll Call

Posted: Sun May 22, 2005 8:27 am
by BrokenWingedAngel85
Hi everyone,
I'm Johanna (pronounced JoAnna). I'm the mother of Daniel, a nine - month - old angel with LOBPI. We currently live in Massachusetts.

Re: New Roll Call

Posted: Sun May 22, 2005 9:00 am
by BIGJAVSMOM
I am Marlyn.
Mom to Manny 5 and Javier 1 (ROBPI)
Wife to DiLeonne.

Re: New Roll Call

Posted: Mon May 23, 2005 6:04 am
by david'smom
Hi im Ramona mother of 2 ( dj age 12 and 7 year old david RT BPI) we also live in mass.david sees DR Water at childrens

Re: New Roll Call

Posted: Tue May 24, 2005 8:35 am
by admin
My name is Kim Cain. I am Sierra's mom. We are from Kentucky. She is 5 years old with robpi.She has had a muscle transfer at 18 months she also had a dislocated shoulder. She now has a dislocated elbow which we are looking into to see if anything can be done. She will be going to Ohio in July.