Re: Re: Sophia's latest casting

[Guest guest]

It does sound like they have slightly different techniques and depending on the

kid and their curve, one technique might work over another.

Re: Sophia's latest casting

Hi Tina,

That is fantastic news. I can't believe Sophia is 18 months.

I wonder what the difference is between the doctors, Dr. ,

Dr. Khoury, & Dr. Sturm?

Max didn't achieve any improvement In-cast by Dr. either,

but did with Dr. Sturm and Miss Mehta. Dr. casted Max twice.

All 3 docs have the proper equipment. It just baffles me.

As you know though, Max had a consistent pattern of progression

despite any treatment including bracing and casting. I pray that the

VEPTR II atleast stablizes the spine if not improves the curve with

each expansion.

Thanks for the update.

Aekta

>

> We just got home from Birmingham, AL where Sophia got her 7th

cast.

> We are so excited and happy to report that we finally got some

> correction with her last cast.... out of cast down to 11

degrees!!!

> Her current in cast is 7 degrees. We go back in June for next

casting

> and hopefully will continue to see improvement. Some of you may

> remember that she did not get any correction with the first cast

done

> by Dr. in Erie, perhaps due to her dropping weight at that

> time. Her second cast done by Dr. Mehta got her curve from almost

40

> degrees down to 22 degrees and greatly improved her rotation and

cut

> her 32 degree RVAD him half. We thought this was fantastic and she

> would only need a few casts to get close to zero. Unfortunately,

the

> next three casts done by Dr. Strum in Chicago did not achieve any

> curve correction (stayed at 20 degrees out of cast) and her

rotation

> worsened (RVAD over 35 degrees in January). No disrespect to Dr.

> Strum or his team who have done great things with other kids, but

it

> just wasn't working for us. We made the difficult decision to

switch

> docs and go to Dr. Khoury in Birmingham since our window of

> opportunity

> was closing as she is now 18 months old (started at 8 months).

> Despite a longer drive, we are very happy with that decision and

so

> excited that we are moving in the right direction again and

hopefully

> will only need 1-2 more casts before we can transition to a

brace!!

> Thanks to everyone for all your support and encouragement. I

really

> don't know what I would do without you!!

> Tina and Sophia

> P.S.

> Just have to share since only this group can truly appreciate the

> irony... half way home after casting she had a BM blow out that

went

> half way up her back. We were at a gas station in the middle of no

> where in Tennessee (we live in Indianapolis) . I ribbed apart the

tape

> and got the shirt loose in order to pull it down and clean under

> there. I pulled it so tight in order to keep the dirty part below

the

> cast and not against her skin, then taped it to the back of the

cast

> (still not really clean). It did the trick until we got home where

we

> deep cleaned the shirt and used the blow dryer. Had to change out

the

> cotton they had in there since it had gotten nasty too. Couldn't

even

> keep her clean and sweat smelling for 12 hours!! Oh well, at least

we

> were able to clean it and the cast was loose enough that if we

laid

> her over our lap we could get up under the back of the cast.

>

__________________________________________________

[Guest guest]

Aekta,

It's snowing?! Yuck! Hope for better weather soon so Max can run and play

outside. I'm sorry he had such a time getting his surgery, but glad he is better

now. Good luck with the potty training- never an easy job!

Tina

Re: Sophia's latest casting

Hi Tina,

Max is doing great each day. We face the daily challenges of a 2

year old, post-surgery comfort, and potty-training all at one time

(not by choice-Max wants to use the potty and I can't say No!). What

use to take us 20 minutes every night for bedtime, now takes atleast

an hour. I can't wait until the weather gets warmer so he can burn

off a lot more energy outside during the day. It is snowing right

now!

Max had his surgery postponed due to pneumonia and was rescheduled

the Wed before Good Friday & Easter. So getting genetic testing done

all at once wasn't doable. I was so stressed about the surgery alone

and a new baby, the genetic testing was not a priority. We will at

Max's first lengthening this fall coordinate the genetic testing and

the expansion at the same time. We know his heart is normal, a

concenr for those with connective tissue disorders.

I'm happy to hear Sophia is going great!

Aekta

> >

> > We just got home from Birmingham, AL where Sophia got her 7th

> cast.

> > We are so excited and happy to report that we finally got some

> > correction with her last cast.... out of cast down to 11

> degrees!!!

> > Her current in cast is 7 degrees. We go back in June for next

> casting

> > and hopefully will continue to see improvement. Some of you

may

> > remember that she did not get any correction with the first

cast

> done

> > by Dr. in Erie, perhaps due to her dropping weight at

that

> > time. Her second cast done by Dr. Mehta got her curve from

almost

> 40

> > degrees down to 22 degrees and greatly improved her rotation

and

> cut

> > her 32 degree RVAD him half. We thought this was fantastic and

she

> > would only need a few casts to get close to zero.

Unfortunately,

> the

> > next three casts done by Dr. Strum in Chicago did not achieve

any

> > curve correction (stayed at 20 degrees out of cast) and her

> rotation

> > worsened (RVAD over 35 degrees in January). No disrespect to

Dr.

> > Strum or his team who have done great things with other kids,

but

> it

> > just wasn't working for us. We made the difficult decision to

> switch

> > docs and go to Dr. Khoury in Birmingham since our window of

> > opportunity

> > was closing as she is now 18 months old (started at 8 months).

> > Despite a longer drive, we are very happy with that decision

and

> so

> > excited that we are moving in the right direction again and

> hopefully

> > will only need 1-2 more casts before we can transition to a

> brace!!

> > Thanks to everyone for all your support and encouragement. I

> really

> > don't know what I would do without you!!

> > Tina and Sophia

> > P.S.

> > Just have to share since only this group can truly appreciate

the

> > irony... half way home after casting she had a BM blow out

that

> went

> > half way up her back. We were at a gas station in the middle

of no

> > where in Tennessee (we live in Indianapolis). I ribbed apart

the

> tape

> > and got the shirt loose in order to pull it down and clean

under

> > there. I pulled it so tight in order to keep the dirty part

below

> the

> > cast and not against her skin, then taped it to the back of

the

> cast

> > (still not really clean). It did the trick until we got home

where

> we

> > deep cleaned the shirt and used the blow dryer. Had to change

out

> the

> > cotton they had in there since it had gotten nasty too.

Couldn't

> even

> > keep her clean and sweat smelling for 12 hours!! Oh well, at

least

> we

> > were able to clean it and the cast was loose enough that if we

> laid

> > her over our lap we could get up under the back of the cast.

> >

>

>

>

>

>

>