Development and hamster wheels (long)

[Guest guest]

Do you ever have one of those days when you feel like you are

running on a hamster wheel and never getting anywhere?

We survived our Early Intervention assesment and we are going to

have 1 OT visit, 1 nutrion visit, 1 nutrition management visit, and

1 developmental visit!!! Between the weight checks, the Endocrine

visits and now this I am exhausted;) How do you all keep up? The

occupational therapist has set a goal for Isaac..to eat 4 oz in 15

minutes or less...consistanly! it takes him anywhere from 20 minutes

to an hour to eat 4 oz. That goal seems so out of reach...For the

first time in a long time I am afraid of our next weight visit. I

don't know if everyone has read the new newsletter but 's

words really hit home with me. For the last 5 months I have been

the " strong " one and didn't seem bothered by Isaac's issues. I now

realize I just wasn't dealing with it and it is catching up with me.

I love my son so much but I am scared for him..I am afraid of what

the future holds and how cruel kids can be. I hate that instead of

doing " normal " things we have to fight to eat, I have to listen to

his screams every other month because the nurses have to draw what

seems like a gallon of blood. I hate that every time a stranger asks

how old is he and I answer they ask how manhy months early was he..I

say he wasn't early just a small guy...the uncomfortable silence..I

know I am just babbling but I know all of you have been where I

am..I can't wait to meet you and your kids in Chicago..I guess I

just need some reassurance that it is all going to be OK.

Thanks for listening.

Mimi

(mom to Isaac, Rss?, hypothyroidism)

P.S.- The Occupational therapist recommended Nuk nipple because of

his high palate..didn't help. Anyone have another suggestion? I have

tried Playtex various flows (disposable nurser), nipple shapes,

etc. Thanks again.