Need Feedback

[Guest guest]

I have a few questions and would love some feedback.

1) My daughter is 9 months old (soon) and is just now sitting up.

Due to her head size (97%) and body size (below 1%) I can't imagine

that she will crawl any time soon. We have her in PT twice weekly

and it is really wonderful. Can you tell me when your children

reached their major milestones (sitting, crawling, walking)? I'm

wondering if her delay is " normal " for a RSS child.

2) At what point did you decide to put your child on a G-tube? How

do I know if Zoe needs one?

3) My pediatrician is awfull - never listens to me even when I asked

him about RSS. He thought I was nuts but we just had the endo. and

genetics doctors confirm it. I've worried about low blood sugar

since she was first born and had severe hypo-g. My ped's doctor told

me that lots of children have tremors and not to worry. Since the

diagnosis I can't stand the thought of seeing this doctor again. We

have a wonderful family doctor but my (husband's) family feels that a

family prac. is not qualified. I say that I just want someone who is

willing to listen to what I have to say and will work with us and be

an *advocate* for Zoe. I have no idea how else to go about finding a

good doctor in Alaska. How would you handle this?

I just love this site. I have to say that I have ups and downs

reading the past messages. One tip I thought I would share with you

is that I have had to battle Zoe since the day she was born to get

her to eat. It got so bad that she would tense up when I picked her

up to feed her. Since this wasn't working I just stopped - I stpped

the madness. It was the hardest thing I've ever done but I just

stopped forcing her. I actually pretend like I don't care if she

eats and the wierd thing is that she seems so much happier and seems

to eat more (no dramatic weight gain (or loss) in over two months).

I'm scared that I will scar her for life if I keep going the way I

was. I am starting to accept that she will be small but I want to

have a positive relationship with her. I still go in the other room

and cry my heart out if she doesn't eat but at least she doesn't know

it.

(AlaskaRSS)