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gonna_be_a_g-ma
11-10-2009, 10:56 PM
Hi! I came here last year about this time and introduced myself then. Can't fine the thread so I guess I will give another intro. I am now a grandma to a pretty healthy grandson Peyton. He was born in Jan of this year. His scoliosis was caught in the womb and we went through a lot of emotion during his last four months there. That is over now and we have our Peyton. He is pretty healthy, one lung is smaller than the other and he is missing some ribs on the right hand side and a smaller clavical also on the right side - infact they thought he was missing his shoulder blade all together! He has Congential Scoliosis. A curve that started at 41 degrees and now is to 65 degrees. The curve is located C6-T5 which effects the cervical and thoracic part of his little spine. Some are fused and not developed correctly. He is a bit delayed in walking and crawling, favors his left side and has asthma but is the happiest little baby I know. He gets therapy, nurse visits, and my daughter's love everyday. Still I am not at ease with all of this. The progression scares me, some of the things the Doctors have said make me uneasy but seeing that smile on his face keeps us all going and hopeful.
Is there anyone out there that could shed some light on this and let us know we are not the only people dealing with this certain kind of curve? We have been told that his condition is very rare. We are going to have to make some very difficult decisions in the up coming months about surgery/treatments. This all makes me so sad because he is such a great baby and has brought so much love and laughter to our lives. No one wants that to go away.
Thanks for taking the time to read this. I look forward to reading on and hearing back from some of you!
~angie~

mgs
11-15-2009, 09:45 PM
I certainly have no words of wisdom, or any advice. Your post touches my heart. Peyton sounds like one fine baby boy, who is a blessing to his family and to all who have the pleasure of meeting him.

I don't live very far from you. . .if, whenever I'm in Madison, I might pass a cute little boy who will be a year old in Jan, I'll ask, "Is this Peyton? I've heard such fine things about him!"

Best wishes for. . .everything to go well, and to work out.

laurieg6
11-16-2009, 01:07 PM
Hi Angie,

I am in another online group for parents (and other relatives) of kids with congenital scoliosis. It's a yahoo chat group and I believe you can write in to: CongenitalScoliosisSupport@yahoogroups.com to access the group. There are lots of families with kids like your grandson on there.

My son was quite a bit older when we had to start dealing with his scoliosis so I don't know as much about infants as I do about older kids. But you'll find numerous people dealing with situations such as yours in the congenital scoliosis yahoo group and they are all very supportive and knowledgeable.

Good luck with everything. I wish you and your family all the best.

Ballet Mom
11-17-2009, 12:03 PM
Hi Angie,

Sorry I can't help with any information for your beloved Peyton. He sounds like a delightful baby boy!

I will keep Peyton and his surgeon(s) in my prayers. I will pray the surgeons receive additional wisdom and enlightment to help little Peyton through his growth and for Peyton to grow into a wonderful young man. :)

God bless you and your family.