Marissa's 4th Cast

[Guest guest]

Hope everyone had a good weekend, we're back from Erie with really no new news

other than Marissa seems to be getting used to the casts as she was in a very

playful mood on the way home. I was very happy to see that.

Her stats haven't changed. Out of cast, 28 or so after cast #3. Dr.

measured 30 this time but said that the difference between 28 and 30 is really

no difference at all, could be the way it was measured etc. In cast the same.

He got 13. Needless to say, I was hoping for better results. It's tough not

getting some sort of correction with each cast. I guess had the first one been

less successful, we'd not be expecting anything. He said that due to the fact

that it's a lumbar curve makes it tough to get at versus a thoracic where you

have more to put pressure on. He told us to stay the course, wouldn't recommend

anything else and it was his opinion that it still has a chance to correct as

she grows. He doesn't see anything leading him to say that this is the best

we'll get.

The reason we got into this is that as I'm sure it's similar with all of you, we

asked him what he thought for long term prognosis and options. Believe me, I'm

happy with the in cast measurements we have, it's just killing us to have her in

this cast for what may be a very long time. My wife is really happy with the

fact that we're skirting surgery, she's jut asking if bracing could hold and

possibly correct some more versus a cast. Dr. was very honest in that

he doesn't think bracing is the way to go at this time. He likes the fact that

in cast, she is very straight and one good catch at a growth spurt will help

with correction. Patience.

All of the other stuff that I mentioned before the trip was a non issue. The

hump around her hip was indeed inflammation from the pressure of the cast. By

Tuesday, it had come down a lot, but was still noticeable. He said it would be

fine, it wasn't bone. The rib hump did in fact move closer to her spine which

is a good thing as the rotation continues to improve.

Thanks again for all of the support. A strong group to collaborate and chat

helps out tremendously. Take care.

Jerry

Marissa's Dad

Re: Re: waterproof casts

Cole started treatment last Nov. at the ETTP in Erie. So it's been about 9

months. He was 8 months when he got his first cast on, and is now 16 1/2 months.

He is in (well just got out) of his 5th cast (that's another story).

His numbers are:

Before treatment: 48 degrees

In first cast: 28 degrees

In 2nd cast: 15 degrees

In 3rd cast: 14 degrees

In 4the cast: 10 degrees

In 5th cast: 8 degrees

His RVAD started out at, I think around 50 degrees and is currently at 9

degrees.

His out of cast curve has seemed to maintain somewhere in the teens, but our

doc doesn't always take before cast xrays, so I'm not too sure about that

number.

Let me know if you have anymore questions. I am an open book when it comes to

Cole's treatment.

How about Nadia's treatment.

Have a nice evening.

/Cole

Abigail Schein <zimmyshine@...> wrote: We would check the inside of

Nadia's cast to see if it were dry by feeling it with our fingers. It usually

would be dry by the next day. However, if we pulled back the pink tape, it would

be soaking wet JUST under there- on the fiberglass side. (Kind of strange!)

I'm curious- how long has Cole been in treatment. How many casts? How old is

he now? If you do not mind sharing, how have his " numbers " evolved cast to cast?

Thanks!!!

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