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Great news, Gail! I bet is a little relieved, too.

Hurray,

& Jake

Gail Kimball <patsmum2000@...> wrote:

Went well. We were scheduled for 12:40, but got a call asking if we

could come in earlier. Got there at 10:30, by the time we were seen and

left, it was 12:40. Hmmmm...

Anyway, her xrays look good. And her next surgery date will be....in

2007! If we go by the " every 4-6 months " standard, her surgery should

have been next month. However, the last surgery did so well, that her

shoulders are symetrical and she is balanced at this point, so there is

no point in expanding the VEPTR right now.

She is up to 41.1 inches tall (or 104.3 cm up from 101) so she is

gaining height - of course I could have told you that since all her long

pants are now capri length!

So we can get through the holidays without worrying about a surgery

and we will see Dr. C in 2007!

Gail

Crafting Blog: http://itsmineitsallmine.blogspot.com/

************************************************

Mom to , 11/28/98 - ADHD/ODD/SID

and , 02/02/02 - Congenital Scoliosis, VATER Association (vertebral and

renal anomalies), Torticollis, Klippel Feil Syndrome, Fused Ribs, First VEPTR

Recipient at Cincinnati Children's Hospital 3/21/05, VEPTR Expansions: 11/05 &

04/20/06

Put a little 'TLC' into your scrapbook!

Independent TLC Scrapbooking Instructor

http:\\www.topline-creations.com\gail

---------------------------------

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  • 4 months later...

Yes, I am cross posting this - easier to type it once.

We got kinda good news and kinda bad news.

The kinds good news is that doesn't need an expansion again. So this

means it has been a year (in April) since her last expansion. Her " surgery side "

(the left) is still a bit higher than the " non-surgery side " so we don't want to

make it more out of sync. So that is one reason for not having the expansion

done. Another reason for not having it done is the kinda bad news. She is

developing some (and I hope I have the terminology correct - I have asked Dr.

Crawford's nurse to confirm it for me) structural kyphosis.

What this means is that some of her discs (not the vertabrae, she does have

some hemivertabrae, but this is different) are not staying " squared " as they

should. They are becoming more of a wedged shape where one part is narrowing and

the other is enlarging. He assured me that her spine, itself, is in no way

compromised, so that is good.

As he put it, with , as we work on one issue, another issue pops up. He is

going to be talking about her at another symposium in the next couple of weeks.

I would love to know just how many she has been brought up at, I can guess at

about 8-10. So, I know he is ALWAYS working towards the best treatment plan for

her. We will see him again in June.

Now, the cool part of the visit.

While sitting in the waiting room, there was an older girl - probably 16 or

17, and her mom asked me if had scoliosis - I said yes and explained that

had had the VEPTR etc. Her daughter had had fusion surgery at about the

same time that had her VEPTR and she said that she remembered reading about

in the paper. And that looked great and how did it go etc.

Well, another mom, with a girl about 3 or 4 came over and said, " I hate to be

nosy, but I heard you talking about the VEPTR, could I ask you some questions?

They are talking about that surgery for my daughter and I have no idea what to

expect etc. " Of course, right then they called 's name. So while we were

waiting in the exam room, I ran out and gave that mom my email address and told

her to contact me. Her daughter was so cute and just a bundle of energy - much

like . , Dr. Crawford's nurse, saw me and asked " Are you passing out

your name again? "

So hopefully, I can help them a bit. And there we are.

Gail

Crafting Blog: http://itsmineitsallmine.blogspot.com/

************************************************

Mom to , 11/28/98 - ADHD/ODD/SID

and , 02/02/02 - Congenital Scoliosis, VATER Association (vertebral and

renal anomalies), Torticollis, Klippel Feil Syndrome, Fused Ribs, First VEPTR

Recipient at Cincinnati Children's Hospital 3/21/05, VEPTR Expansions: 11/05 &

04/20/06

Put a little 'TLC' into your scrapbook!

Independent TLC Scrapbooking Instructor

http:\\www.topline-creations.com\gail

---------------------------------

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