Amy,
Welcome! You've found a good group of folks, but maybe at a bad time. Volume on the list usually goes down in the summer and this summer seems to be true to form, or worse than usual. This list is composed mostly of adults with CP. Some of us have other conditions as well - I have hydro-cephalus. We'll answer all the questions we can, from the perspective of people with CP (etc). There are a couple of other lists you might want to check out as well. There is one for parents of kids with CP, http://www.cpparent.org/, and one for both parents of kids with hydroce-phalus and folks with hydro itself:
HYCEPH-L Listserv Home Page http://www.geocities.com/HotSprings/Villa/2020
If we can help, let us know!
I work for a university program that provides education, and training and performs research related to developmental disabilities. If you'll let me know where you are, I'll get you contact info for a colleague in your area.All the states have at least one program that does things similar to what we do.
Kendall Corbett
Coordinator of Consumer Activities
Wyoming INstitute for Disabilities -WIND
1000 E. University Avenue
Dept. 4298
Laramie, WY 82071
(307) 766-2853
[log in to unmask]
The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore, all progress depends on the unreasonable man.
-George Bernard Shaw 1856-1950
"An unreasonable man." (my wife says that's redundant)
Hi my name is Amy and I have a 15 month old daughter, Alex, with
extrapyramidal Cerebral Palsy, Cleft lip/Palate (repaired), Strabismis
(repaired), Optic Nerve Hypoplasia and slight hydrocephalous (no shunt,
so far). We have been in early intervention since January and now have
begun private PT, OT, Speech (for feeding) and Hydro therapies. We are
currently battling her weight - (18 lb 4 oz) which has been under the
chart since she was 7 months old. Her height is in the 30th percentile
and her head is up in the 90th. She was on Isomil with Polycose added
for several months and since April Pediasure with a thickener (due to
her aspirating food and tongue thrusting - which is getting better). I
feel horrible every month when I take her in for a weight check - The
nurse always looks at me like I am not feeding my child. Some months
she only gains ½ a pound and some months just nothing, I guess at least
she has never lost weight in a month which is good. It has been a
battle to get her to eat. If there is any sort of noise she stops - if
she doesn't get enough movement before the feeding (she likes to bounce)
she can't control her body in order to sit still for the bottle or even
spoon time. She eats 20-25 ounces a day and maybe 2 jars of stage 1 or
2 foods, I know it isn't enough for her age, but we cannot find a way
for her to eat more. If I give her more jar food than she skips a
bottle, which is really bad, since she looses all of those calories.
Just for a little history on her -
03/26/03 - Born one week early - no huge complications during pregnancy
or delivery -
6 # 4 oz - (10%) - 19 1/2 in - (50%) - 33.6 cm - (25%)
07/23/03 - Cleft lip repair and ear tubes at 4 months
11/03/03 - Outpatient MRI under general anesthesia (due to congestion)
for poor eyesight and Strabismis
11/11/03 - Chronic Otitis Media (ear infections) to receive PICC Line
(IV antibiotics) under general anesthesia
12/26/03 - Cleft palate repair, fix tongue tie and ear tube replacement
01/09/04 - PICC Line taken out - ear infections gone (yeah)
01/27/04 - CT Scan of head - due to extra fluid found on MRI
04/06/04 - Strabismus repair (great success - she can see much better
now)
05/27/04 - Video Swallow Study at Children's Radiology - showed
aspiration of fluids
The best part of her and all of this is that she is a VERY happy little
girl. Every time we go to a new doctor she smiles through it all, they
have all been so amazed at her social development. Her physical
development is at the 5 month level, but believe me she is trying her
little heart to control her muscles enough to do some stuff. Thank God
for Early Intervention and all of the therapists out there - If I didn't
have them than I would have no idea what to do!!!!
I am sorry if I am running-on, but I don't really have anyone to talk to
regarding all of this. That is why I searched for this site. I thought
I might be able to help someone else or get some help - I am new at this
- when I grew up I didn't know very many people who had children with
disabilities, let alone this many in one child. Thanks for reading my
e-mail - if anyone has ideas or just wants to talk - please write me
back!! Thanks - Amy
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