----- Original Message -----
From: "Karen" <karens@xxxxxxxxxxxxxxxx>
> But Claire is definitely one up on Alex - Alex has never in his life cried
> for food. If I had left the master on demand feeds as a baby he would have
> starved to death and I am serious.
Same with USA Alex.
I had to set the darned alarm clock to get up to feed him every 2 hrs. After
5 months or so I was so exhausted (It would take 1-2 hrs to get a few ounces
in him then back up to go again in 2 more hours) I decided to 'test' Alex to
see how long he wouldsleep/go without food.
Then I kept getting up to make sure he was alive. His respiration was so
slow/low that I used a mirror under his nose. We got to almost 20 hours and
I finally couldn't stand it anymore and woke him up to feed. (people kept
telling me that "he'll tell you when he's hungry"---yea right.
Even at 16 yrs old I have to make sure he eats. If left to his own devices
he might grab some cheese and a banana and that would be it for the day. I
still have to make sure he drinks enough to stay hydrated.
> Alex never moved much as a baby at all. In fact he slt around the clock
> unless woken.
Yep, same thing here again with USA Alex in the first 5-6 months.
Then he started having "awake" times in the morning and afternoon. People
would say "he's such a good/easy baby.....how lucky you are". Well, no, we
weren't lucky. It was MORE work making sure he was moving, stimulated, fed,
worked with, than it would be watching a child develope/mature on their own
(something we did AFTER our trier and so noticed the difference more). Not
to mention what all the stress/worry does to you---very exhausting stuff as
you all know.
Michelle mom to Alex (16,partial trisomy 14 mosaic) and Molly (12)
MichiganUSA
Building ___ooOOoo__ Rainbows
www.trisomyonline.org
Families Helping Families On-line