Re: Some Good News

[Guest guest]

Thanks!

Actually, in regards to the spine, since it is structural and not idiopathic

(a few of his thoracic vertebrae failed to segment during development) bracing

doesn't really help much. Although, like Ponseti, there is a doc in Utah who

does serial casting for scoliosis. It sometimes, but not always, helps in

sctructural cases as well. But, I don't think we'd be going that route. The

body casts are no comparison to the leg casts. It lasts for years, first of

all. Sleeping becomes next to impossible in a regular crib, clothing becomes an

issue, crawling, walking, everything. As much as I would hate for to have

surgery, I'd rather just do that and get it over with than go through years of

serial casting for his spine and then have to have surgery anyway. At this age,

they would not have to use any rods or any sort of instrumentation--they would

take bone from his ribs and graft it to the " un-fused " portion of the

aforementioned vertebrae. If we waited for surgery, he would

need all this metal put into his body. So, right now, I'm just hoping he will

not need surgery at all. There is a slight chance that his spine will

straighten out on it's own.

Anyway, I've been getting quite the education since becoming a mother a year

ago! And for the first time just last week I had to deal with the " normal "

issue of an ear infection!!!

All my best to you all!

(12/15/04 RT CF, FAB 12-14 hrs./day)

frogabog wrote:

WOW!! Way to go ! make mama put stuff away now lol!

Thanks for the update , hope nothing has changed with his

spine. Do they not brace it anymore? I know they used to... but

that was in adults or kids... at least that I remember.

Kori

At 08:34 AM 12/22/2005, you wrote:

>Well, is officially creeping/commando-crawling--exactly one

>week before his 1st birthday which was on 12/15. I never thought

>I'd see the day. While some babies start to walk by their first

>birthdays, I am happy that we are at least mobile and moving forward!!!

>

> I just wanted to share our happy news. This is the best

> Christmas present (and birthday present!)

>

> Now, we have our follow-up appt. with our orthopedist on January

> 3rd. I'm not so worried about the foot as I am about his

> spine. He has scoliosis and if his curve has gotten worse since

> his last x-ray, the doc will want to do surgery. So, any prayers

> are greatly appreciated!

>

> Happy Holidays to everyone!

>

>

> (12/15/04 RT CF, FAB 12-14 hrs./day)

>

>__________________________________________________

>

[Guest guest]

Thank you, !! Yes, we are all very excited. It's so amazing to see him

spot something across the room and make his way towards it! (Especially, when

it's me or my husband who he's crawling towards!)

And I'm sure it's even more amazing to see walking fully on his own

now!!! How awesome! Congrats!

I'll let you know what happens with Feldman on the 3rd. We were supposed to

go earlier in December but decided to just get through the holidays first and

then go.

All my best,

Kearns wrote:

Hi ,

Congratulations on 's mobility! A new found freedom for him, I'm sure.

We'll be praying for good results on Jan 3rd. Let us know how things go.

Regards,

and

PS has finally taken to walking fully (about 2 weeks ago.) He loves

it!

Sinanis wrote:

Well, is officially creeping/commando-crawling--exactly one week before

his 1st birthday which was on 12/15. I never thought I'd see the day. While

some babies start to walk by their first birthdays, I am happy that we are at

least mobile and moving forward!!!

I just wanted to share our happy news. This is the best Christmas present

(and birthday present!)

Now, we have our follow-up appt. with our orthopedist on January 3rd. I'm not

so worried about the foot as I am about his spine. He has scoliosis and if his

curve has gotten worse since his last x-ray, the doc will want to do surgery.

So, any prayers are greatly appreciated!

Happy Holidays to everyone!

(12/15/04 RT CF, FAB 12-14 hrs./day)

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