Re: Re: Uneven growth spurt? Outgrowing a cast?

[Guest guest]

Okay, good - then I'm glad I'm not the only one. In a way, it's good

because he's growing (we noticed today that his feet are hanging off

the edge of the stroller now). Growth is good. But - it's hard -

said that he's not concerned about the shoulder because it's

loose (they made it really thin this time and it's wiggly) but more

about his hips - because he can hardly even tuck the diaper anymore.

We're calling again in the morning and seeing if even wants us

to do the x-rays, or if we can just schedule a re-cast. I hate going

through it, but progress is key and if he's outgrowing it, we need it

off for sure!

Hope you're feeling well soon - I remember that soreness well.

Love

Sandi

[Guest guest]

Sandi,

Yes, it is entirely possible Jack has outgrown his cast. Todd outgrew his first

cast after only 5 weeks, though he was scheduled for recast in 12 weeks! I

emailed Dr Khoury's nurse to ask if it was possible he'd outgrown it. They

thought it more likely that the cast had just moved, but when I emailed photos,

they said, " Wow, he sure has grown! " Dr Khoury had her schedule us for a new

cast as soon as they could get us in, which was 2 weeks out, so he was in the

cast a total of 7 weeks.

Here is why we suspected he'd outgrown the cast:

1. We could clearly see the red sores on his hips at the end of the day, and

did not have to peer up under the bottom of the cast like in the beginning.

2. He could bend his legs at 90 degree angle for sitting. Dr Khoury had

originally said he wanted to see only about 45 degrees!

3. He was not eating as much most days. Not sure this was related since it was

just after a big growth spurt, but pretty sure.

4. He'd had a huge growth spurt and was much taller!

5. His belly button was almost touching the bottom of the tummy cut-out,

whereas at first it was several inches away.

6. His movements were much, much easier, and he was far less impeded by his

cast. Things seemed too easy, if you know what I mean.

7. The diaper was even more impossible to tuck under the cast.

8. We had a gut feeling.

I've learned we really have to trust our gut feelings as parents of babies with

medical conditions! If you can email photos, that is probably the best way for

your doctor to tell if Jack's outgrown the cast without your being there in

person.

Let us know what happens!

, Mommy to Todd

Re: Re: Uneven growth spurt? Outgrowing a cast?

Okay, good - then I'm glad I'm not the only one. In a way, it's good

because he's growing (we noticed today that his feet are hanging off

the edge of the stroller now). Growth is good. But - it's hard -

said that he's not concerned about the shoulder because it's

loose (they made it really thin this time and it's wiggly) but more

about his hips - because he can hardly even tuck the diaper anymore.

We're calling again in the morning and seeing if even wants us

to do the x-rays, or if we can just schedule a re-cast. I hate going

through it, but progress is key and if he's outgrowing it, we need it

off for sure!

Hope you're feeling well soon - I remember that soreness well.

Love

Sandi

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[Guest guest]

That's a great idea. We actually did just get our doctor's email

address this past week, so I'll snap a few pictures and send them and

see what he thinks. I'm glad to hear that these things happen. I was

wondering this evening, during his bath, if there were markers that

casts had been " outgrown " - and it's very validating to read your list

(as if you had read my mind!).

Thank you so much!

I'll let you know what I hear back tomorrow.

S

[Guest guest]

I have noticed the same sore spots around Dylan's hips as well. We have an

appt. for Feb. 12th. I'm hoping he can last that long. Ironically, his cast

seems a little too loose up top, but around the hips, it seems it is getting too

tight. is supposed to be calling me back this week to let me know what

Dr. Sturm thought of the in-cast follow up x-rays we sent right before the

holidays. I'm also going to ask her about it. Maybe we need to see if we can

get in sooner for a cast change.

Re: Uneven growth spurt? Outgrowing a cast?

Hi Sandi,

Very interesting you bring up Jack possibly out growing his cast. I

noticed on Max after a first diaper change I did this past week (not

wanting him to kick my stomach after the c-section so i let Dave

change Max's diaper)that he too has grown and his cast is too small.

I can tell from the cast around the hips. He gets sore spots on his

hips and I can see them clear as day without pressing on his skin to

look up the cast for skin irritiation around the hips.

I didn't think Max would go thru another growth spurt so quickly,

but I guess he did.

I, too, have had a few calls into about Max's surgery date and

no replies.

A week ago, Max refused eating after 1 or 2 bites. Afterh imn eating

again, I realized he wasn't feeling well.

I hope calls soon. The waiting game is aweful when our babies

are suffering.

Aekta

>

> I've noticed in the last day or two that one of Jack's shoulder

straps

> are touching his shoulder - but there's still a ton of room on the

> other side.

>

> Also, his tummy seems to REALLY sticking out these days in the

> cut-out. Like - several inches protruding. He also isn't eating

many

> solids at all. I have no idea if the two are related, but thought

I'd

> mention it. With the cut-outs, I don't think it's putting

pressure on

> his abdomen - but if you recall, his abdomen was totally bruised

last

> time when we got the cast off.

>

> This one is about 7 weeks old on him. Do we need to be looking at

a

> removal soon? They scheduled us for March and I balked - that's

too

> long for him, I'm sure (last time we lost all correction when we

> waited that long - it's three months and Dr. Sturm said two, tops

if

> this one is holding).

>

> Thanks for any input. Obviously, I'll call in the morning -

but

> we're having trouble actually HEARING from her.

>

>

> --

> 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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[Guest guest]

,

We got moved back to Feb. 12 now too. We were scheduled for Jan. 29th, but they

called me last week and said they had to rescheduel for 2/12. That will be 9

weeks for Sophia is this cast (#4), and she has always had them changed right at

the 8 week mark. We are also concerned about the sores where her hips are

rubbing the cast. It was almost raw last week just from being in the car seat

for a 30 minute drive. I am putting Aquaphor on, but it doesn't seem to be

helping much. I am worried she might not last until 2/12. Please let me know

what says both about the date and the hips. Would love it if we could be

there at the same time and meet in person!

Thanks,

Tina

--------- Re: Uneven growth spurt? Outgrowing a cast?

Hi Sandi,

Very interesting you bring up Jack possibly out growing his cast. I

noticed on Max after a first diaper change I did this past week (not

wanting him to kick my stomach after the c-section so i let Dave

change Max's diaper)that he too has grown and his cast is too small.

I can tell from the cast around the hips. He gets sore spots on his

hips and I can see them clear as day without pressing on his skin to

look up the cast for skin irritiation around the hips.

I didn't think Max would go thru another growth spurt so quickly,

but I guess he did.

I, too, have had a few calls into about Max's surgery date and

no replies.

A week ago, Max refused eating after 1 or 2 bites. Afterh imn eating

again, I realized he wasn't feeling well.

I hope calls soon. The waiting game is aweful when our babies

are suffering.

Aekta

>

> I've noticed in the last day or two that one of Jack's shoulder

straps

> are touching his shoulder - but there's still a ton of room on the

> other side.

>

> Also, his tummy seems to REALLY sticking out these days in the

> cut-out. Like - several inches protruding. He also isn't eating

many

> solids at all. I have no idea if the two are related, but thought

I'd

> mention it. With the cut-outs, I don't think it's putting

pressure on

> his abdomen - but if you recall, his abdomen was totally bruised

last

> time when we got the cast off.

>

> This one is about 7 weeks old on him. Do we need to be looking at

a

> removal soon? They scheduled us for March and I balked - that's

too

> long for him, I'm sure (last time we lost all correction when we

> waited that long - it's three months and Dr. Sturm said two, tops

if

> this one is holding).

>

> Thanks for any input. Obviously, I'll call in the morning -

but

> we're having trouble actually HEARING from her.

>

>

> --

> 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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[Guest guest]

Hi ladies,

Just wanted to suggest flaring the cast. 's cast were on at the beginning

for 10 weeks, but did have one on for 3 months(that one having the BEST

correction). When it was getting tight around the hips to avoid taking it off

too soon, we would flare it out a tad. It allowed him a little extra room and

we were able to keep it on for the time needed.

Of course age could play a factor with you guys. I can't remember all your

babies' ages. was 15 months when he started the casting process.

Anyway just thought I would suggest flaring the cast.

Take care,

Tasha

Mommy of twin boys- and 33 months

Fort Worth, Texas

tinamorris11@... wrote: ,

We got moved back to Feb. 12 now too. We were scheduled for Jan. 29th, but they

called me last week and said they had to rescheduel for 2/12. That will be 9

weeks for Sophia is this cast (#4), and she has always had them changed right at

the 8 week mark. We are also concerned about the sores where her hips are

rubbing the cast. It was almost raw last week just from being in the car seat

for a 30 minute drive. I am putting Aquaphor on, but it doesn't seem to be

helping much. I am worried she might not last until 2/12. Please let me know

what says both about the date and the hips. Would love it if we could be

there at the same time and meet in person!

Thanks,

Tina

--------- Re: Uneven growth spurt? Outgrowing a cast?

Hi Sandi,

Very interesting you bring up Jack possibly out growing his cast. I

noticed on Max after a first diaper change I did this past week (not

wanting him to kick my stomach after the c-section so i let Dave

change Max's diaper)that he too has grown and his cast is too small.

I can tell from the cast around the hips. He gets sore spots on his

hips and I can see them clear as day without pressing on his skin to

look up the cast for skin irritiation around the hips.

I didn't think Max would go thru another growth spurt so quickly,

but I guess he did.

I, too, have had a few calls into about Max's surgery date and

no replies.

A week ago, Max refused eating after 1 or 2 bites. Afterh imn eating

again, I realized he wasn't feeling well.

I hope calls soon. The waiting game is aweful when our babies

are suffering.

Aekta

>

> I've noticed in the last day or two that one of Jack's shoulder

straps

> are touching his shoulder - but there's still a ton of room on the

> other side.

>

> Also, his tummy seems to REALLY sticking out these days in the

> cut-out. Like - several inches protruding. He also isn't eating

many

> solids at all. I have no idea if the two are related, but thought

I'd

> mention it. With the cut-outs, I don't think it's putting

pressure on

> his abdomen - but if you recall, his abdomen was totally bruised

last

> time when we got the cast off.

>

> This one is about 7 weeks old on him. Do we need to be looking at

a

> removal soon? They scheduled us for March and I balked - that's

too

> long for him, I'm sure (last time we lost all correction when we

> waited that long - it's three months and Dr. Sturm said two, tops

if

> this one is holding).

>

> Thanks for any input. Obviously, I'll call in the morning -

but

> we're having trouble actually HEARING from her.

>

>

> --

> 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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[Guest guest]

That's how they flared Jack's too - a few little slits along the

bottom and then flaring.

I've heard you can use pliars to sort of encourage the edges outward, too.

If you guys are scheduled for February, gosh - we have no hope. We're

on the book in MARCH! Eeek.

I hope calls back today.

S

[Guest guest]

Hi Tina,

I should have explained. My husband always used pliers and only at the bottom

of the cast several places all around. 's casts were pretty low so it at

least gave me a little extra room to change his diaper. It did not make it

loose around the hips........which need to be tight anyway.

He simply took the pliers and turned them up a bit to loosen the cast. Does

that make any sense?

Tasha

tinamorris11 wrote: OK,

I know it's Monday and I'm a little slow today.....

but how do you flare it out? When they did that on her first cast in

Erie around the stomach, they cut slits in it first (removed the

moleskin to cut, then reapplied after. They kind of scored the edge,

then used their hands to pull it out. Did you do anything like that?

The bottom of her cast is very thick and heavy.

Thanks,

Tina

P.S. Sophia is 16 months old

> >

> > I've noticed in the last day or two that one of Jack's shoulder

> straps

> > are touching his shoulder - but there's still a ton of room on the

> > other side.

> >

> > Also, his tummy seems to REALLY sticking out these days in the

> > cut-out. Like - several inches protruding. He also isn't eating

> many

> > solids at all. I have no idea if the two are related, but thought

> I'd

> > mention it. With the cut-outs, I don't think it's putting

> pressure on

> > his abdomen - but if you recall, his abdomen was totally bruised

> last

> > time when we got the cast off.

> >

> > This one is about 7 weeks old on him. Do we need to be looking at

> a

> > removal soon? They scheduled us for March and I balked - that's

> too

> > long for him, I'm sure (last time we lost all correction when we

> > waited that long - it's three months and Dr. Sturm said two, tops

> if

> > this one is holding).

> >

> > Thanks for any input. Obviously, I'll call in the morning -

> but

> > we're having trouble actually HEARING from her.

> >

> >

> > --

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

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

> > Currently undergoing serial casting.

> >

>

> __________________________________________________________

> Looking for last minute shopping deals?

> Find them fast with Yahoo! Search.

http://tools.search.yahoo.com/newsearch/category.php?category=shopping

>

>

[Guest guest]

Update- we are now back on for January 29th (originally was 1/29, then moved

back to 2/12, now back to 1/29)!

So... maybe the 2/12 spot is open or maybe they would consider adding Jack to

the 1/29 schedule since they would already have the equipment in there for

Sophia. I would keep calling . The last two times I called her, from

OR scheduling is the one who called me back- not . So not sure if is

out or just really busy right now. It sounds like his cast might be getting too

tight and he may need it changed out pretty soon.

We just met with feeding specialist at Riley Hospital for Children in

Indianapolis last week. We have had feeding issues with Sophia since we started

casting. Even before casting, she had pretty bad reflux & gastric delayed

emptying (food stays in her tummy and doesn't move on through like it should, so

the next meal causes both to come back up). A swallow study done in May before

her first cast also showed liquids penetrating over into the path to her lungs

instead of going down into the stomach. So... we have had her on meds and

Pedisure for months. Once we started casting, it has been a real fight to get

her to eat anything even a bottle

The therapists told us not to be afraid of junk food (which we normally don't

have in our home). They offered her everything from double stuff Oreos, fruit

loops, to mini-Pringles. They said the nutrients are in the Pedisure (or in your

case breastmilk) and the table food is for extra calories and fat, so these

foods are OK as long as they are not the core of her diet. They said to shoot

for 2 Tbs each of protein, fruit/veggies, and starch/bread at each meal plus her

20-36 oz of Pedisure a day. They said to be sure and rotate foods often, since

kids with feeding issues get burnt out on a food super quick. When we find

something she will eat (like Yo-Babies yogurt), then we keep giving that to her.

They said not to do that because within a few days, then she won't want that

food, which is what happened with her yogurt. They said to put 2 days between

offerings of a favorite food to keep it a favorite. You may want to see someone

too regarding the allergy issue. It seems that you have a few different issues

factoring in to the problem- tight cast, food allergies or sensitivities, etc.

You might check with your pediatrician to see if your Children's Hospital there

has any programs that could evaluate Jack and offer suggestions. The folks we

met with last week gave us tons of great suggestions specific to Sophia (like

working with her to use a straw cup in place of regular sippy to reduce the

penetration/aspiration issue). Good luck with Jack and keep us posted!

Tina

Re: Re: Uneven growth spurt? Outgrowing a cast?

That's how they flared Jack's too - a few little slits along the

bottom and then flaring.

I've heard you can use pliars to sort of encourage the edges outward, too.

If you guys are scheduled for February, gosh - we have no hope. We're

on the book in MARCH! Eeek.

I hope calls back today.

S

[Guest guest]

Thanks Tasha,

I will get into the tool box and find some pliers to try that tonight!

Tina

Re: Re: Uneven growth spurt? Outgrowing a cast?

Hi Tina,

I should have explained. My husband always used pliers and only at the bottom

of the cast several places all around. 's casts were pretty low so it at

least gave me a little extra room to change his diaper. It did not make it loose

around the hips........which need to be tight anyway.

He simply took the pliers and turned them up a bit to loosen the cast. Does

that make any sense?

Tasha

tinamorris11 wrote: OK, I know it's Monday and I'm

a little slow today.....

but how do you flare it out? When they did that on her first cast in

Erie around the stomach, they cut slits in it first (removed the

moleskin to cut, then reapplied after. They kind of scored the edge,

then used their hands to pull it out. Did you do anything like that?

The bottom of her cast is very thick and heavy.

Thanks,

Tina

P.S. Sophia is 16 months old

> >

> > I've noticed in the last day or two that one of Jack's shoulder

> straps

> > are touching his shoulder - but there's still a ton of room on the

> > other side.

> >

> > Also, his tummy seems to REALLY sticking out these days in the

> > cut-out. Like - several inches protruding. He also isn't eating

> many

> > solids at all. I have no idea if the two are related, but thought

> I'd

> > mention it. With the cut-outs, I don't think it's putting

> pressure on

> > his abdomen - but if you recall, his abdomen was totally bruised

> last

> > time when we got the cast off.

> >

> > This one is about 7 weeks old on him. Do we need to be looking at

> a

> > removal soon? They scheduled us for March and I balked - that's

> too

> > long for him, I'm sure (last time we lost all correction when we

> > waited that long - it's three months and Dr. Sturm said two, tops

> if

> > this one is holding).

> >

> > Thanks for any input. Obviously, I'll call in the morning -

> but

> > we're having trouble actually HEARING from her.

> >

> >

> > --

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

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

> > Currently undergoing serial casting.

> >

>

> __________________________________________________________

> Looking for last minute shopping deals?

> Find them fast with Yahoo! Search.

http://tools.search.yahoo.com/newsearch/category.php?category=shopping

>

>

[Guest guest]

They did call yesterday and moved us up to 2/12. I dont know how

we'll wait that long. that is a total of, what, 11 weeks? That

scares the heck out of me. Dr. Sturm said EIGHT, tops. If we lose

correction I'm going to be SO upset.

That description of being burnt out on food makes PERFECT sense,

though. Thank you so much. I'm going to definitely follow-up with

our local PCP to get someone to evaluate him. The last couple days

we've tried the less quality food, more quantity - just anything to

get him to eat - and he's still really not interested. Then, he

discovered he likes orange juice and by yesterday afternoon his face

was totally flushed and rashy. So, I don't know what we're going to

do. I definitely feel like this is the point where my knowledge and

experience are worthless and someone else needs to come in. <sigh>

I'm glad they moved you guys up! I'm anxious to hear how it goes for

you all. Sophia is SO close!!!!! It makes me giddy just thinking

about it.

Sandi

[Guest guest]

from Chicago Shriners just called again and moved Sophia to Monday 1/28

(even though they told us they don't do castings on Mondays, which is what we

had originally requested to help with travel and missing so much work). I am

hoping that is because Jack is coming on the 29th? The people at the hotel think

I am nuts since I have changed the reservation three times in less than a week,

but we still have a room so thankful for that. Wishing you and Jack the best-

Tina

Re: Re: Uneven growth spurt? Outgrowing a cast?

They did call yesterday and moved us up to 2/12. I dont know how

we'll wait that long. that is a total of, what, 11 weeks? That

scares the heck out of me. Dr. Sturm said EIGHT, tops. If we lose

correction I'm going to be SO upset.

That description of being burnt out on food makes PERFECT sense,

though. Thank you so much. I'm going to definitely follow-up with

our local PCP to get someone to evaluate him. The last couple days

we've tried the less quality food, more quantity - just anything to

get him to eat - and he's still really not interested. Then, he

discovered he likes orange juice and by yesterday afternoon his face

was totally flushed and rashy. So, I don't know what we're going to

do. I definitely feel like this is the point where my knowledge and

experience are worthless and someone else needs to come in. <sigh>

I'm glad they moved you guys up! I'm anxious to hear how it goes for

you all. Sophia is SO close!!!!! It makes me giddy just thinking

about it.

Sandi

[Guest guest]

If so, they haven't told us. We're on 2/12, as far as I know.

I'll keep my fingers crossed that they just need to call US.

I swear, half of them don't know what the other half is doing most of the time!

S

[Guest guest]

I am also still awaiting a call from . I find it frustrating how long it

takes to get any response when you call up there. I understand they are busy

and I guess I should be thankful since it's all free, but it is very frustrating

to not hear back from anyone for sometimes up to a week or more. We are also on

the list for 2/12, so if neither one of us gets rescheduled, I guess we will

likely get to meet you in person then.

Re: Re: Uneven growth spurt? Outgrowing a cast?

If so, they haven't told us. We're on 2/12, as far as I know.

I'll keep my fingers crossed that they just need to call US.

I swear, half of them don't know what the other half is doing most of the time!

S

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[Guest guest]

Well, that's something for me to look forward to, at least

(though, I'm bummed because I thought it would be all three of us and

it looks like Tina is moved up - wah!)

Sandi

[Guest guest]

Sandi,

Have you heard back from or anyone from Shriners yet? I left another

message for this morning and emailed Dr. Sturm last night. I am certain

Dylan has outgrown his cast. His belly button is touching the bottom of his

cast now and it is starting to rub his hips raw and I was also noticing it just

doesn't look like it's low enough on the hips anymore. Like you, we were told

by Dr. Sturm to bring him back in 8 weeks and it will be 12 by the time we go up

for his next casting. I am getting really concerned about it.

Re: Re: Uneven growth spurt? Outgrowing a cast?

Well, that's something for me to look forward to, at least

(though, I'm bummed because I thought it would be all three of us and

it looks like Tina is moved up - wah!)

Sandi

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[Guest guest]

All they did was move us up to the 12th of February.

I know that's not soon enough, but I'm not sure what else to do.

His belly button is folded now - it's being compressed so much. He

didn't sleep last night - I'm not 100% certain it's that - but he was

so restless and just thrashing around. We gave him tylenol.

I so badly wish we had a local casting facility now. I'm getting

really frustrated.

S

[Guest guest]

Yeah, I'm getting a little frustrated as well So sorry to hear Jack isn't

feeling well.

Re: Re: Uneven growth spurt? Outgrowing a cast?

All they did was move us up to the 12th of February.

I know that's not soon enough, but I'm not sure what else to do.

His belly button is folded now - it's being compressed so much. He

didn't sleep last night - I'm not 100% certain it's that - but he was

so restless and just thrashing around. We gave him tylenol.

I so badly wish we had a local casting facility now. I'm getting

really frustrated.

S

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