Re: New To Group---MEREDITH

[Guest guest]

Hi Meredith.

Welcome! i don't know if you remember me but we used to be on the Chromosome

4,5,6 group. my daughter Chloe has a Chromosome 6 deletion. she will be

5 in july.

Chloe also has scoliosis. Was casted from 20 months to 4.5 years. we didn't

get much correction but she did not get worse which is a good thing because it

had been progressing rapidly.

We are taking a break right now in a brace to address some issues and then enjoy

the summer but then she will go back into a cast in september. we are trying to

put off surgery as long as possible but for chloe it is inevitable.

she tolerated the cast remarkably well. the first few days she was confused and

a little angry to have woken up to be wearing this big plaster thing! once she

got used to it, it was no big deal she also was able to do more and it was so

nice to see her sitting so straigh. i was worried too that becasue she couldn't

really understand what was happening that it would make it harder but she really

adapted quite quickly!

when will olivia be casted? how are you all doing?

xo

Celeste (mom to Chloe 4.5, 13 casts at chicago shriners, brace break, chromosome

6q deletion syndrome and connor, 3, no issues but a lot of attitude!)

>

> Hi,  my name is Meredith and I am new to this site. My daughter Olivia is 8

and has a degree of 86.  My daughter has a genetic disorder called Cri Du Chat

and is in the severe/profound category.  She is small and is basically the size

of a typical 4 year old.  We are going to attempt to cast her for the next three

years and then do the fusion surgery.  Are there any families out there that

have a child who is somewhat involved that have had the casting done?  Also, how

long have many of you done the casting for?  I do not mean to sound naive, but

do they correct it with a gradual straightening?  Is that why the casts are

changed every five months?  We will be going to Riley in Indianapolis.

> Meredith

>

hi

[Guest guest]

Hi Celeste!! Good to hear from you. We are trying to buy time too. I was hoping she would get some improvement with the casting. Do you have to cast for the next five years? We are trying to make it to at least 11, which means 3 years. I do not know exactly when because they are waiting to hear back from us but wanted to give us a chance to look things up online. I have a call in today to ask my questions and schedule. Other than the scoliosis, we are good. She has had a good cold and flu with only one case of broncitis. How are you guys doing?MeredithFrom:

lettyo67 <celesteoconnor@...>Subject: Re: New To Group---MEREDITHinfantile scoliosis treatment Date: Wednesday, April 11, 2012, 8:57 AM

Hi Meredith.

Welcome! i don't know if you remember me but we used to be on the Chromosome 4,5,6 group. my daughter Chloe has a Chromosome 6 deletion. she will be 5 in july.

Chloe also has scoliosis. Was casted from 20 months to 4.5 years. we didn't get much correction but she did not get worse which is a good thing because it had been progressing rapidly.

We are taking a break right now in a brace to address some issues and then enjoy the summer but then she will go back into a cast in september. we are trying to put off surgery as long as possible but for chloe it is inevitable.

she tolerated the cast remarkably well. the first few days she was confused and a little angry to have woken up to be wearing this big plaster thing! once she got used to it, it was no big deal she also was able to do more and it was so nice to see her sitting so straigh. i was worried too that becasue she couldn't really understand what was happening that it would make it harder but she really adapted quite quickly!

when will olivia be casted? how are you all doing?

xo

Celeste (mom to Chloe 4.5, 13 casts at chicago shriners, brace break, chromosome 6q deletion syndrome and connor, 3, no issues but a lot of attitude!)

>

> Hi, my name is Meredith and I am new to this site. My daughter Olivia is 8 and has a degree of 86. My daughter has a genetic disorder called Cri Du Chat and is in the severe/profound category. She is small and is basically the size of a typical 4 year old. We are going to attempt to cast her for the next three years and then do the fusion surgery. Are there any families out there that have a child who is somewhat involved that have had the casting done? Also, how long have many of you done the casting for? I do not mean to sound naive, but do they correct it with a gradual straightening? Is that why the casts are changed every five months? We will be going to Riley in Indianapolis.

> Meredith

>

hi