View Full Version : We're back!!

10-16-2003, 03:31 PM
Hi Susan & Carmell. We're back!!

Jimmy is doing great. His curve is maintaining in the mid 30's. He's in Kindergarten and he's thriving!!

He has been off of CIC for 15 months now with no problems.

Take Care,


10-17-2003, 12:19 PM
Hey Jim!

I'm so happy to hear Jimmy is doing so well! You must be very proud of your young man in kindergarten. I'm sure he's highly intelligent and the star of the show. I hope and pray he continues to maintain his stability and continues to grow and develop in all ways! Thanks for the update - I've been wondering how you are doing!

10-17-2003, 12:27 PM
Carmell - It's great to hear from you too. How are Kara and Braydon doing? I absolutely can not believe that it has been 2 years since Braydon's implant surgery. It just doesn't seem like that long ago. Is it holding up? Have the adjustments been effective and fairly straightforward?

10-17-2003, 01:37 PM
Hi Jim,

Yes, Braydon's implant surgery was 2 years ago August. He has had 4 expansion surgeries since then, with the latest being just Sept 22 - 3-1/2 weeks ago. This surgery involved a rod replacement (they had to put in a longer spine support rod because he had already outgrown the first one - the chestwall support will be exchanged/replaced in 6 months from now). He is doing AMAZINGLY well. He is growing and thriving more than we had hoped.

Until recently, the orthopedic community did not address the potential lung function in children with severe scoliosis and/or chestwall deformities. Our ortho and Dr. Betz from Philly Shriners are heading a research team to document pulminary functions of children who have had VEPTR/Titanium Rib implants. For example, Braydon's lung capacity just after his implant surgery 2 years ago was 51% (it was even worse than that prior to the implantation). In September, his lung capacity measured 71%. A pretty significant improvement.

I'm learning that when a child's body oxygenates well, the entire system responds better. All the organs are healthier and tend to grow and thrive. That's what we are finding with Braydon. After each expansion (every 6 months) he has yet another burst of growth and energy that gives his body another boost toward being healthy. He is healthier now than he's ever been. His rapid recovery from major back surgery is amazing. He had surgery on a Monday... went back to school 1/2 days the following Monday, then full days just a week after that. This is a sign to me that he's accepting these surgeries as just another part of his life - he takes them in stride.

The theory is that if they address the lung size and capacity issues in childhood, the health of these kids as adults are vastly improved. They already know that if no intervention is done, these kids will become oxygen, or possibly ventilator dependent as adults - as early as 18-20yrs old. Not my idea of fun. Many died early in life due to lung disease because the lung tissue was so compromised. The other result is that the medical expenses are not as drastic as adults because they are healthier and doing much better. The TRP's #1 goal is to address lung function, and secondary, it addresses spine stabilization.

We're not sure what the plan will be once Braydon's body reaches skeletal maturity. Right now (until technology improves) they plan to do a stabilization surgery around age 17 or so - fusing the spine into place to hold the position it's been in for these years. I'm hoping they come up with something less severe by the time Braydon gets that far along. Braydon's spine is already very rigid from his previous fusion, I can't imagine it being fused more.

Kara is doing well. Her scoliosis appears to be stable - has measured about 38-40 degrees for 2+ years now. She will go back in the spring for another evaluation. She will turn 18 in May, so we'll talk about the options she needs, if any, in case we need to consider surgery before she gets much older. Her scoliosis is a lumbar curve, with an upper compensatory curve. Her spine also has a "significant rotation" which makes her scoliosis somewhat visible (if you know what you're looking for). She has back discomfort frequently. She tries to exercise and keep her muscles strong (she's not dancing anymore) and that helps, but not completely. She's a senior in highschool this year and is looking forward to graduating soon!

I have a photo journal of his implant surgery on my webpage. And, a fairly recent photo of him this summer... he's growing up fast! I'm sure Jimmy is too!


That's enough rambling from me... again, it's great to hear from you and hear that Jimmy is doing well! Keep up the great work!