Re: Olive &

[Guest guest]

Great update on lil Olive and your experience in SLC. Fabulous that

you've been able to connect with other families!

HRH

> We also will be in SLC for Olive's 2nd casting on March 1st!

> She is doing very well in her first cast- honestly, she hasn't even acted

> like she knows it's there. This is probably due to her only being 15

> months old, but it really hasn't been too bad. She has gotten frustrated

> over the things she isn't able to do physically any more, but that's

> getting better as well, as she relearns how to do things. It's been 4

> weeks now, and she has regained most of what she was doing before- she is

> definitely top heavy, but it gets better every day! She has had no trouble

> sleeping, which I was worried would be really hard for her, so that's a

> blessing.

>

> When we got to SLC, her curve was at 73 degrees & they were able to get it

> to 27 degrees in the first cast! We are hoping for more correction each

> time, obviously, but you never know...

>

> We have two friends here in Oklahoma now, Jonas' & Londynn's families, &

> they have been so kind to us, with all sorts of tips & encouragement!! We

> are so thankful to have made new friends who know exactly what we are

> going through & help this to feel more " normal " .

>

> Anyway, just wanted to give everyone an update on us- things were so crazy

> when we got back from SLC a few days before Xmas, but we've got things

> under control now (knock on wood) and I thought I should touch base.

>

> See you in SLC, Amber- looking forward to meeting you!

>

> Logan

> Mom of Olive- 15 months

> 73 degrees out of cast/ 27 degrees in first cast

>

> On Jan 17, 2012, at 4:09 PM, " Amber Scholl " <amber@...> wrote:

>

>> Hi ,

>> We also go to SLC & have nothing but the best to say about the care my

>> son

>> has received. Levi is in his 2nd cast & is almost 23 mos old. (2 @ end

>> of

>> FEB) We will be in SLC on FEB 29th also! Levi gets his 3rd cast done

>> March 1 & we go in sometime late afternoon the day before (when we land)

>> to get the old one cut off. If your baby girl is casted right away (as

>> in

>> your 1st trip out) maybe we will see you guys there getting casted also.

>> Its a lot that 1st time, but SLC made it all so smooth. Levi had an MRI

>> prior to getting accepted as a patient so I have no idea about if they

>> will cast without it, but I'm sure they will tell you. We had a similar

>> choice for treatment...we could have gone closer to home, but we wanted

>> an

>> experienced doc & a cast made out of POP instead of only fiberglass. Can

>> I ask why you suspect Marfan's syndrome? I ask because when we 1st went

>> down this road we got a lot of comments about my husband's height

>> (6'7'')

>> But everyone in his whole family is tall (at least 6' or over) so I've

>> just thought genetics....also SLC has met my husband in person & never

>> suggested testing, but it's everyone in the medical community's 1st

>> question " Is your whole family tall " ....I've often wondered if they were

>> trying to rule out Marfan's.

>> Amber

>> mommy to Levi

>> SLC 2nd cast 31* holding at 16/17* in cast with no rotation!

>>

>> PS. please feel free to email me if I can help you with any questions at

>> all! I remember how overwhelming the 1st time was...where to stay.. what

>> to expect...what to bring...its a lot!

>>

>> > Hi, I am . We found our 17.5 month old daughter has a 25*

>> curve.

>> > The initial report was 20 but after the Ortho read it they said 25,

>> and

>> > that was about 6 weeks ago it was taken. We have an appointment at SLC

>> on

>> > Feb 29. I am currently waiting to hear back if they will do a casting

>> at

>> > her first appointment. She has not had an MRI yet, so I don't know if

>> > that will hold them back at all. I don't care if I have to be there

>> for a

>> > week, I really want her casted like yesterday. She has been getting

>> > chiropractic adjustments in the meantime. We also found out this week

>> > that my 8 year old son has a moderate curve, but we have yet to hear

>> the

>> > actual degree. This has all hit like a ton of bricks. What an

>> emotional

>> > roller coaster! My husband also has scoliosis and has rods and fusion

>> at

>> > 16, so we know what that is like and really don't want them to have to

>> go

>> > what he has gone through and the pain he still has. I have so much

>> guilt

>> > for not finding their diagnosis sooner. We are in Southern California

>> by

>> > Loma and they talked to us yesterday and said they can and do

>> Mehta

>> > casting like SLC (traction, table, etc.) but we know our insurance

>> would

>> > only pay half. Plus there just seems to be a comfort to me when I

>> think of

>> > SLC and the time they have been doing it and what I have read about

>> how

>> > supportive they are for any testing (I have suspicions that my husband

>> and

>> > kids have Marfans). I am so grateful to have found this site and to be

>> > gathering info as we wait for our appointment.

>> >

>> >

>> >

>> >

>>

>>

>