Update on Jillie

July 11, 2004

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,

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