Amy,
never heard of extrapyramidal Cerebral Palsy, extrapyramidal Cerebral
Palsy,  what is it, how did it hapen?

Tamar Magenta Raine
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IM; tamarmag48
Oakland Mayor's Commission on People with disabilities


> [Original Message]
> From: Amy Frick <[log in to unmask]>
> To: <[log in to unmask]>
> Date: 6/24/2004 11:22:44 AM
> Subject: New members
>
> 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 =96 (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 =96 which is getting better).  =
> I
> feel horrible every month when I take her in for a weight check =96 The
> nurse always looks at me like I am not feeding my child.  Some months
> she only gains =BD 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 =96 =
> if
> she doesn=92t get enough movement before the feeding (she likes to =
> bounce)
> she can=92t 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=92t 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. =20
> Just for a little history on her =96=20
> 03/26/03 =96 Born one week early =96 no huge complications during =
> pregnancy
> or delivery =96=20
> 6 # 4 oz =96 (10%) - 19 1/2 in =96 (50%) - 33.6 cm =96 (25%)
> 07/23/03 - Cleft lip repair and ear tubes at 4 months=20
> 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 =96 ear infections gone (yeah)
> 01/27/04 - CT Scan of head =96 due to extra fluid found on MRI
> 04/06/04 - Strabismus repair (great success =96 she can see much better
> now)
> 05/27/04 - Video Swallow Study at Children's Radiology =96 showed
> aspiration of fluids
> =20
> 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 =96 If I =
> didn=92t
> have them than I would have no idea what to do!!!!
> =20
> I am sorry if I am running-on, but I don=92t 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 =96 I am new at =
> this
> =96 when I grew up I didn=92t know very many people who had children =
> with
> disabilities, let alone this many in one child.  Thanks for reading my
> e-mail =96 if anyone has ideas or just wants to talk =96 please write me
> back!!  Thanks - Amy