Re: Update on Jillie

[Guest guest]

<<and the one who flings food!>>

That made me Laugh out Loud!!!!

Liam dosen't fling food he just breaks it into little peices, and throws it

away!

Mom to Liam (3 1/2 years old 34 3/4 " 27 lbs

SGA / possible RSS, Hypothyriod, Epilepsy.) Started GHT 5/18/04

and Jed (11 years old) Tourettes, CAPD,SVT.

SW Orlando FL

[Guest guest]

just feeds it to the dogs. They love him dearly. Conny

> <<and the one who flings food!>>

>

> That made me Laugh out Loud!!!!

>

> Liam dosen't fling food he just breaks it into little peices, and

throws it

> away!

>

>

> Mom to Liam (3 1/2 years old 34 3/4 " 27 lbs

> SGA / possible RSS, Hypothyriod, Epilepsy.) Started GHT 5/18/04

> and Jed (11 years old) Tourettes, CAPD,SVT.

> SW Orlando FL

[Guest guest]

hi victoria!!

we met up in MA at the gathering and we talked by phone the one day,

i cant wait to see you guys again at convention!! and yes she is

damn cute!!!!

jodie

(nicholas-6 nonrss, christopher-3 rss 24lbs 1.7oz 34 " periactin, ght

genotropin(on hold until convention), ADHD(possible), assmentry(left

side 1cm), johnathon-1yr nonrss)

> Hi Guys,

>

> Have been avidly reading your posts but not getting an opportunity

to

> reply till tonight as evidenced by all the messages I've posted.

> Gotta love this time of the night!

>

> Jillie turned 2 last month. She still is mainly GT fed but we

> continue to struggle with oral food intake. Some days she will

take

> in 40 cals by mouth for the day. Other times she may take 200. she

> can love a food one day, refuse to eat it the next. She hates any

> fluid besides water and coffee. Her intake can be as high as 200cc

in

> a day of water since she's learned to drink from a straw. All very

> messy and time consuming. I feel my life revolves around food -

> trying to get it into Jillie and trying to prevent me from eating

it.

> I wish I lost weight with stress. Instead I eat all the high

calorie

> foods I buy for Jillie that she eats little of.

>

> Jillie had her 2 yr EIP assessment last week. At 2, she scores at

the

> 8 month level for gross motor development. Very disappointing. I

> think very delayed for all the hospitalizations she endured in her

> first year and because her head is 98th percentile (same as my

large

> for gestational age son) and her body is not on the charts. She

still

> cannot be in a crawl position and lift her head up. She has head

lag

> when you pull her up to sit. She was also very delayed in speech -

15

> month expressive (signs) and 20 month receptive. Socially and

> cognitively normal. Scored 26 month for her fine motor skills.

Very

> mixed. Kinda confusing.

>

> She still needs oxygen for sleeping and when she is ill or gets

> upset. Still hangs out on a monitor. Still requires nursing care

and

> averages 20+ appointments a month between EIP and her multitude of

> doctors appointments. But she's happy and loved.

>

> I'm looking forward to seeing some of you at convention in 11

days.

> I'm the tall one with the english accent, with an even taller

husband

> and a very large 5 yr old son. My daughter is the damn cute one

with

> the hair, the oxygen, the monitor and the one who flings food!

>

> Have a safe trip - best wishes,

>

>

[Guest guest]

Hi Jodie!

Well, I don't know if they had to do that with me when I was REALLY

little...but my memories of " eating experiences " were pretty strong

by the time I was 3 or so and I don't remember being " mouth swept "

as much as swallowing under threat of death <wink...OK, not really>.

-Sharon-

Just an RSS kid who grew up

> hey sharon!!

> we use to call christopher a chipmuck because of the way he would

> pack his cheeks and hold the food in them!! we actually had to

> start doing finger sweeps of his mouth after he fell asleep

because

> he would go to sleep and still have food tucked away!!!!

> jodie