can anyone help?

[Guest guest]

Hello,

My name is , I learned of my daughters diagnosis last

month, and a few days ago found this site, and thought I'd join the

chats! Her name is Dasia, 19 months, 16lbs, 29in. My greatest

concern is, I've heard so much about the feeding tubes, and her

devel. ped. didn't mention it, I learned how common it is on-line

after I got the diagnosis, and the nutritionist I've been working

with wasn't thrilled about the idea when I brought it up to her

recently. Yet I know Dasia definitely has plenty of bad days, and

inside I'm terribly afraid of compromising her final height, or her

brain development! The nutr. says she should be getting 850

calories, and I'm quite sure that rarely happens, if ever. Is there

anyone with the same aged child who could say how much their child

is getting? Or someone who remembers this age? I have to blend her

food, all high calorie, high fat foods, and on a good day she'll

finish two 4oz containers, one usually at lunch and the other at

dinner. I add heavy whipping cream to her milk which has carn.

instant breakfast, and on a good day will finish an 8oz cup. She'll

have a little bit of food for breakfast, and a couple bites of

different things I try to offer her during the day, and that's

pretty much it! The only thing that has kept me from getting overly

worked up about it all, is the fact that she doesn't look really

skinny, she has a little double chin, and looks pretty healthy to

me, with what looks like a healthy amount of baby fat, certainly not

as chunky as I would want, like my other 2 were! She just looks like

a much younger baby, and has a very small frame. The logical side of

me thinks her body wouldn't be storing any body fat, if the energy

was intended for growth or brain devel., or maybe I'm just in

denial! Anyone?