SLC - 1st casting

[Guest guest]

Hi, all. I'm new to the group and wanted to introduce myself. I'm

MacBain, and my daughter, Vivian, is 3 years old. She was born with a condition

called esophageal atresia, which means that her esophagus was in two pieces

rather than one, so for the first 6 months or so of her life she was fed through

a g-tube, and by the time she was 3 months she had had two surgeries, one with a

serious complication due to the central line they had to insert to give her

anesthesia and meds.

Very shortly after we made it through that difficult period, Vivian was

diagnosed with infantile scoliosis. She has been in a brace since Nov. 2008,

but her curve continues to worsen. Right now it's at around 45 degrees. We

have been approved for treatment by Dr. D'Astous at Shriners in SLC, and we will

make our first trip there on April 19. I have begun talking to Vivi about the

cast, trying to prepare her for it but in positive terms. ( " It will be very

tight, but you will have a shirt on underneath that will help us to scratch your

itches! " --things like that.)

I'm worried enough about the whole process--particularly since we have seen more

of our share of the insides of hospitals and are well aware of what can go wrong

(as well as what can go right, I should add). But Vivian also has severe GERD,

for which she takes rather heavy doses of Nexium. The cast will surely

exacerbate the problem for her. As it is, she complains regularly that " My food

is coming up. " I suppose I worry that the cast will be too much for her and

that we'll have to abandon this promising treatment, or else I worry that the

cast *won't* be too much, and she'll just have to live with a certain amount of

suffering and discomfort.

I'm sure my anxieties and concerns are familiar to all of you. Vivian's dad and

I have already seen her through so much--so I do not doubt our abilities to help

our child--but I do fear and dread and worry about what poor Vivian will go

through. I wonder if any of you can help me to feel some bit of relief by

giving me an idea of what to expect this first time around. I know that each

kid is different, but perhaps I've made the whole thing scarier in my mind than

it actually is.

Thanks for reading my long-winded note, and thanks in advance for any thoughts

you may have.

Mother of Vivian, 3

Tacoma, WA