roll call for Kayla

[Guest guest]

I'm Cherese, mom to Kayla, 2-1/2, bilaterial perisylvian polymicrogyria.

She was diagnosed at 3.5 mos after having infantile spasms, but we knew at 38

weeks gestation that her brain was different. Kayla is pretty mobile now.

She doesn't walk unassisted or free stand, but has been standing and pulling

up for about one year. Sometimes the delays are so long it's hard to

believe! Her 9 month old brother gets around so much easier than she does.

Her brother is a great motivator for her. She uses a " ponywalker " and a

conventional walker to get around. She uses signs and is very vocal. It's

really hard to pick out actual words, but she definitely continues to try to

communicate ideas. I'm taking a sign language class to augment our

communication. Even signing with Kayla is hard because her left side is much

weaker than the right, so two handed signs are difficult and most others are

an approximation because of overall motor difficulty. Her receptive language

is really good, but expressive is not. Kayla also weighs about 20 pounds

and loses a couple everytime she gets a bad cold or flu that involves

vomiting. She's on depakane for myoclonic seizures and we just uped the

dosage yesterday because she was still having one pretty much every morning

after waking- with just one day's increased dose, she already seems groggy

and out of it and is drooling more- I know we're just beginning this battle.

.. . Kayla is a sweet little girl who is very social, friendly and loving.

She loves to take pictures. (I'll post a picture of her when I learn to do

the digital stuff). She does many age appropriate things, and is geting

better and better with self help skills, like using a spoon to feed herself

and drinking from a cup. She now shows me the sign for potty when she has a

bowel movement- I'm really excited over this accomplishment-for her and for

me! She eats mashed up, soft foods, but can eat crunchy things like crackers

too, and she drinks pediasure as nutritional back-up. I recently took her

out of an early intervention program she was going to because it wasn't very

enriching, but she should start getting home visits again soon. We're pretty

active with doing " normal " toddler things, but the mobility issue is always

there and it's getting harder with her brother who is now crawling everywhere

and has his own agenda. Kayla keeps moving forward in her development and

I'm sure I'll get used to everything taking a REALLY LONG TIME. I'm glad

she's come as far as she has and I hope she continues to grow. I'm currently

looking for a mom's helper so that's keeping us busy and Kayla, her brother

and I will be going to Hawaii at the end of February, YEAH! Vacation will be

fun but challenging and restful and exhausting all at the same time!