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Re: We finally heard back

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So when is he scheduled for?

You'll just have to go w/the Mommy instinct. You know if it's too tight, just

watch it like you are and when you see sores develop or other changes, call and

let them know that Jack is coming out of the cast and you need him in ASAP.

I'm SO sorry, I know it's frustrating!

" *\\o/* San *\\o/* " wrote:

Well, DH finally tracked them down - after calling three times today

he had her paged.

She was nice, he said, but said she and Dr. Sturm went over the whole

surgical schedule the last couple days and there is just NO way they

can get Jack in any earlier. :((

She didn't mention seeing the pictures - expressed his concerns

and she said just try to keep him in the cast as long as possible and

watch for skin breakdown or sores.

I'm less than happy.

--

Mom to Madison, Skylar, on, Piper, & - diagnosed with

infantile scoliosis at 10 months with a 70° right thoracic curve.

Currently undergoing serial casting.

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

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I don't even know what to say. I am sorry Sandi. When is he scheduled to come

back in. He looks SO uncomfortable in those pictures.

Noelle (12-2-01)

Ian (8-15-04)

We finally heard back

Well, DH finally tracked them down - after calling three times today

he had her paged.

She was nice, he said, but said she and Dr. Sturm went over the whole

surgical schedule the last couple days and there is just NO way they

can get Jack in any earlier. :((

She didn't mention seeing the pictures - expressed his concerns

and she said just try to keep him in the cast as long as possible and

watch for skin breakdown or sores.

I'm less than happy.

--

Mom to Madison, Skylar, on, Piper, & - diagnosed with

infantile scoliosis at 10 months with a 70° right thoracic curve.

Currently undergoing serial casting.

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Oh, man. That seems so long for him to go like that, but with his curve being

so significant, you really don't want him to be out of cast for any length of

time.

Sorry!

Noelle (12-2-01)

Ian (8-15-04)

Re: We finally heard back

2/12 :(

S

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Sandi,

I just feel awful for Jack. The pictures looked like the cast is pretty tight.

had some super tight ones too. He was even in one for 3 months and a few

days. Of course he didn't have any skin problems or anything else that

concerned us.

Well like someone else said, you go by your gut feelings. You know him better

than anyone. So what will be the totally time in this cast if he makes it?

How long does Dr. Sturm generally leave the casts on babies/children?

I am thinking about you guys and will say a prayer.

Take care,

Tasha

" *\\o/* San *\\o/* " wrote:

Well, DH finally tracked them down - after calling three times today

he had her paged.

She was nice, he said, but said she and Dr. Sturm went over the whole

surgical schedule the last couple days and there is just NO way they

can get Jack in any earlier. :((

She didn't mention seeing the pictures - expressed his concerns

and she said just try to keep him in the cast as long as possible and

watch for skin breakdown or sores.

I'm less than happy.

--

Mom to Madison, Skylar, on, Piper, & - diagnosed with

infantile scoliosis at 10 months with a 70° right thoracic curve.

Currently undergoing serial casting.

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

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Sandi,

I am so sorry! I just don't understand. I just can't imagine they can't help

get him in sooner. Hell, they have moved Sophia's appt four times now, so I know

that they rearrange kids quite often. You are all in my thoughts and prayers. I

will keep praying you get a call on Monday that they have been able to do

something to get him in there much sooner.

Hang in there- we are all here for you!

Tina

We finally heard back

Well, DH finally tracked them down - after calling three times today

he had her paged.

She was nice, he said, but said she and Dr. Sturm went over the whole

surgical schedule the last couple days and there is just NO way they

can get Jack in any earlier. :((

She didn't mention seeing the pictures - expressed his concerns

and she said just try to keep him in the cast as long as possible and

watch for skin breakdown or sores.

I'm less than happy.

--

Mom to Madison, Skylar, on, Piper, & - diagnosed with

infantile scoliosis at 10 months with a 70° right thoracic curve.

Currently undergoing serial casting.

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I agree with the suggestion to call one of the orthopedic residents on call. Or

take him to your local Shriners and see if they can trim it? Maybe if you just

have it trimmed some around his belly he will be more comfortable and can hold

out a little longer. You could also go to your local pediatrician and see what

they think or if they can trim it. If the pediatrician thinks something needs to

be done right away, maybe they could call Dr. Sturm or on your behalf.

Tina wrote:

Sandi,

I am so sorry! I just don't understand. I just can't imagine they can't help get

him in sooner. Hell, they have moved Sophia's appt four times now, so I know

that they rearrange kids quite often. You are all in my thoughts and prayers. I

will keep praying you get a call on Monday that they have been able to do

something to get him in there much sooner.

Hang in there- we are all here for you!

Tina

We finally heard back

Well, DH finally tracked them down - after calling three times today

he had her paged.

She was nice, he said, but said she and Dr. Sturm went over the whole

surgical schedule the last couple days and there is just NO way they

can get Jack in any earlier. :((

She didn't mention seeing the pictures - expressed his concerns

and she said just try to keep him in the cast as long as possible and

watch for skin breakdown or sores.

I'm less than happy.

--

Mom to Madison, Skylar, on, Piper, & - diagnosed with

infantile scoliosis at 10 months with a 70° right thoracic curve.

Currently undergoing serial casting.

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Thanks, girls.

It'll be okay.

I spent some time no longer being frustrated and angry and just

feelind tearfully defeated, but he isn't having skin breakdown and

we're fortunate there.

I think that everything happens for a reason, and I'm convinced that

this has happened because we are destined to find another surgeon

locally and expand ET even further in the midwest. If I were not so

frustrated this week, I would not have felt so urgent about it.

As for Jack - he's doing alright. He's getting a molar, we figured

out, and that could account for some of his lack of appetite. We're

going to pursue some feeding therapy wtih our primary care doc and

just keep holding on. If it gets bad enough, we'll have to get it cut

off.

It's wrong - it really is. But, like you said - we have our hands tied.

S

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Hi Sandi,

I looked at your pictures late last night and I am finding it hard to believe if

the doctor looked at those photos, he wouldn't want to see your son ASAP. Of

course this is just my opinion, but I would continue to push. Print those photos

and overnight them to his attention, along with a letter expressing your concern

and the fact that he is not eating. I am just speachless. Again I am not a

doctor but that just looks wrong. Also may I suggest that you call back daily

and ask for any cancellations. Is there anyway you can talk to the doctor

directly? I am praying that he gets seen ASAP.

~ &

Re: We finally heard back

2/12 :(

S

________________________________________________________________________________\

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Oh, wow. That is so frustrating! My heart goes out to you and the little guy.

Hoping for a change in the winds soon.

, Mommy to Todd

We finally heard back

Well, DH finally tracked them down - after calling three times today

he had her paged.

She was nice, he said, but said she and Dr. Sturm went over the whole

surgical schedule the last couple days and there is just NO way they

can get Jack in any earlier. :((

She didn't mention seeing the pictures - expressed his concerns

and she said just try to keep him in the cast as long as possible and

watch for skin breakdown or sores..

I'm less than happy.

--

Mom to Madison, Skylar, on, Piper, & - diagnosed with

infantile scoliosis at 10 months with a 70° right thoracic curve.

Currently undergoing serial casting.

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

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Sandi,

How far is it from St. Louis to Kansas City? Is that too far? Another Mom

posted awhile ago that they were moving to KC and I suggested Dr. Nigel Price.

He has been invited to all the ETPs but hasn't attended. They have a halo

program and do the VEPTRs. All they need is ET. Just a thought.

Shellie

" *\\o/* San *\\o/* " wrote:

Thanks, girls.

It'll be okay.

I spent some time no longer being frustrated and angry and just

feelind tearfully defeated, but he isn't having skin breakdown and

we're fortunate there.

I think that everything happens for a reason, and I'm convinced that

this has happened because we are destined to find another surgeon

locally and expand ET even further in the midwest. If I were not so

frustrated this week, I would not have felt so urgent about it.

As for Jack - he's doing alright. He's getting a molar, we figured

out, and that could account for some of his lack of appetite. We're

going to pursue some feeding therapy wtih our primary care doc and

just keep holding on. If it gets bad enough, we'll have to get it cut

off.

It's wrong - it really is. But, like you said - we have our hands tied.

S

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

Never miss a thing. Make Yahoo your homepage.

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Sandi I am so sorry!! Can somone trim him and give him some room? Have they

seen the pictures?

Shellie

" *\\o/* San *\\o/* " wrote:

2/12 :(

S

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Never miss a thing. Make Yahoo your homepage.

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