Update on Summer and Autumn

[Guest guest]

Hi all. I havn't been on here in a while, we were out of town for a

little bit, all four of my kids were in my bro in laws wedding. They

were so adorable, Autumn was a flower girl along with Summer and

another little girl Autumn's age. My boys were ringbearers. The

other 2 yr old flower girl was so much bigger than Autumn and we just

got endless comments on how tiny she is and a lot of

looks...especially because there was another girl to compare her to.

Of course we got endless compliments on how cute they all were too!

My 7 yr old Skye pulled a decorated wagon with my 3 yr old son Ocean

in it and Summer on his lap. They were followed by Autumn and the

other flower girl. I can't believe they did so well.

Well, when we got back the kids got sick and of course Autumn had it

the worst. We have been saved a hospital visit becuase of her new g-

tube, she stopped eating and drinking and even threw up a lot from

her gag reflex due to coughing. Even now she is barely eating and

despite her tube feeds, she has lost some weight and is about 18.5

lbs down from her 19, but we are working on it. Summer is doing well

and loves to eat even when she is sick! She nurses a lot but at 8

mos doesn't eat too much baby food although she does seem to love

infant oatmeal with bananas! She has made it to 13 lbs even so she

is doing well although her weight is dipping further below the

charts. She has cheeks and chunky thighs although nothing else is

chunky on her. It is funny and her genetcist remarked how

interesting it is because when he looks at her chart and

weight/length he expects a skinnier baby, but when he sees her it

just doesn't match up! I find it interesting, she is only a little

heavier than Autumn was at this age...maybe 8 oz or so but Autumn was

skinny looking and her legs were twigs...go figure, Summer has chunky

roly poly legs.

My oldest son Skye had a brain MRI today for growth/behavioral issues

non RSS/SGA related. He had to be sedated and we were there all

day...he tried really hard to lay there without sedation but kept

moving his mouth a little and the images were blurry, he was so upset

he couldn't do it without the iv sedation (he was so scared of that)

He seemed to do well at first but over time he kept insisting he

could walk and would try to do stuff and I would have to catch him

from falling over. I guess the best description would be he seemed

drunk all night...sluggish, slurry talk, not quite wiht it, tipsy

walking but convinced he is just fine, then he went into a full blown

hysterical crying/screaming fit for over an hour for no reason and

finally fell asleep. I hope the stuff will be out of his system by

morning. we should have results in a couple of days.

I hope everyone is well. I havn't been able to keep up with all the

posts I have missed. I have not been able to be on the computer much

lately.

mom ot Autumn RSS 25.5 mos, Summer SGA poss RSS 8 mos,

Ocean 3.5 yrs, Skye 7.5 yrs