Re: It's been a while since I posted/ update

[Guest guest]

,

So sorry to hear of your loss. It sounds like you've done the best

job of coming to terms with things, and I'm sure that will be

glad to have your undivided attention in the upcoming months. Glad

you were able to find a course of treatment that works for you guys

and we will look forward to more updates. We'll all be keeping you in

our prayers.

Mom to Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobbs' brace, 14hrs/day)

>

> Hi, all!

>

> I just wanted to pop in and say hello. We've been in " Scoliosis

World " for the past 3 months.

>

> A quick update regarding : He is now 15 months old. He is

due to have spinal fusion surgery at the end of April. We went to a

few different orthos, and ultimately decided to stick with our

original--the doc also treating for his foot (Dr. Feldman at

NYU). His recommended surgery seemed like it would be the " simplest. "

currently has 5 vertebrae that are fused together on the right

side--they never separated during development. So, the surgery will

fuse the other side as well, to stop him from growing any more

crooked. Fusion surgery isn't ideal in someone so young, but because

of the type of scoliosis that he has, it's really our best option

right now. Assuming all goes well with the surgery, he will be in a

back brace for 4-6 months. Can you imagine--the FAB AND a back

brace???????

>

> Aside from that, he is standing and cruising, and once in a while

walking behind his push toy. He also learned to climb the stairs.

He's doing great and I hate that all of this will be interrupted with

the surgery....But I know it's for the best that it should happen

sooner rather than later....

>

> Last time I posted, I was newly pregnant. I miscarried just a

couple of weeks ago. As devastated as we are, we know everything

happens for a reason.... God probably figured we would have enough on

our plate for now with and everything....

>

> Also, a few of you had suggested that I e-mail Dr. Ponseti

regarding 's scoliosis. Thank you for your suggestions! I did

e-mail him, and a colleague of his called me back within a half hour.

While Dr. P. no longer keeps up-to-date with the latest scoliosis

treatments, his colleague does and was nice enough to talk to me for a

good half hour discussing 's case. It's so great to have gotten

another opinion from someone who wouldn't be benefiting at all (i.e.

making money off of my son's surgery.) He was a deciding factor in

NOT going along with our third opinion's suggested course of treatment.

>

> Anyway, I just wanted to give you all an update. For all you

newbies on here, don't worry your kids' feet will be fine. I was a

doubter and I just could not foresee how would ever walk or be

" normal, " but his foot really is fantastic! He is so close to

walking, I can just feel it!

>

> Take care and thanks for listening!!!

>

>

> mom to (12/15/04, right CF, 12/7 FAB)

>

>

>

> __________________________________________________

>

[Guest guest]

,

It is great to here you are finally satisfied with your decisions for . I

know how hard these things can be when they are so major, like with the spine.

has a cavity in his spine that can sometimes lead to scoliosis. Right

now we are just watching it, and if it doesn't change, we are going to leave it

alone, as it is more risky to drain it than to leave it if it isn't going to do

anything. Decisions, decisions, decisions!

It was great to here from you! Is the surgery scheduled yet? I am sure

things will go wonderfully. I will be praying for your family and !

11/19/04

Sinanis wrote:

Hi, all!

I just wanted to pop in and say hello. We've been in " Scoliosis World " for

the past 3 months.

A quick update regarding : He is now 15 months old. He is due to have

spinal fusion surgery at the end of April. We went to a few different orthos,

and ultimately decided to stick with our original--the doc also treating

for his foot (Dr. Feldman at NYU). His recommended surgery seemed like it would

be the " simplest. " currently has 5 vertebrae that are fused together on

the right side--they never separated during development. So, the surgery will

fuse the other side as well, to stop him from growing any more crooked. Fusion

surgery isn't ideal in someone so young, but because of the type of scoliosis

that he has, it's really our best option right now. Assuming all goes well with

the surgery, he will be in a back brace for 4-6 months. Can you imagine--the

FAB AND a back brace???????

Aside from that, he is standing and cruising, and once in a while walking

behind his push toy. He also learned to climb the stairs. He's doing great and

I hate that all of this will be interrupted with the surgery....But I know it's

for the best that it should happen sooner rather than later....

Last time I posted, I was newly pregnant. I miscarried just a couple of weeks

ago. As devastated as we are, we know everything happens for a reason.... God

probably figured we would have enough on our plate for now with and

everything....

Also, a few of you had suggested that I e-mail Dr. Ponseti regarding 's

scoliosis. Thank you for your suggestions! I did e-mail him, and a colleague

of his called me back within a half hour. While Dr. P. no longer keeps

up-to-date with the latest scoliosis treatments, his colleague does and was nice

enough to talk to me for a good half hour discussing 's case. It's so great

to have gotten another opinion from someone who wouldn't be benefiting at all

(i.e. making money off of my son's surgery.) He was a deciding factor in NOT

going along with our third opinion's suggested course of treatment.

Anyway, I just wanted to give you all an update. For all you newbies on here,

don't worry your kids' feet will be fine. I was a doubter and I just could not

foresee how would ever walk or be " normal, " but his foot really is

fantastic! He is so close to walking, I can just feel it!

Take care and thanks for listening!!!

mom to (12/15/04, right CF, 12/7 FAB)

__________________________________________________