Roll Call

[Guest guest]

Hello, everyone.

I'm Meg, mom to Teddy who is two years old with PMG.

Not much has changed around here in the past month,

but we seem to have a lot of new members so I'll go

ahead and introduce myself.

Teddy was born on February 13, 1999. Teddy was

diagnosed with polymicrogyria when he was less than

two weeks old. We knew something was wrong

immediately when he was born, because he was having

trouble breathing. He had no suck reflex, either, and

they placed a feeding tube from his nose to his

stomach (ng tube) when he was just hours old. He was

transferred at three days old to Children's Hospital

of Philadelphia, where an MRI found the PMG. We

brought Teddy home a week later with the feeding tube

and an apnea monitor.

Teddy developed severe reflux a few weeks after he

came home. We kept him on the ng feedings, and he

gained weight slowly in spite of throwing up what

seemed like at least half his feedings. Then in

August 1999 he developed aspiration pneumonia. In

order to prevent future pneumonias, doctors placed a

more permanent feeding tube in his stomach. He has

had it ever since, is growing slowly, and hasn't had

any further pneumonias. He still does not take any

food by mouth, only tastes, although we are working

with his feeding therapist on this. At two years and

three months old, he weighs 28 pounds.

In addition to the feeding issues, Teddy has right

side hemiparesis, in other words cerebral palsy that

affects his right side greater than his left.

Additional diagnoses are vocal cord paralysis, and

microcephaly. Dr. Dobyns read Teddy's MRI and

confirmed the PMG diagnosis, further refining it to be

biparietal perisylvian polymicrogyria.

Teddy is delayed in all areas of development.He has

physical, occupational, and communication therapy once

a week; and feeding therapy and a special education

teacher twice a month. Teddy can crawl well, climb

stairs on his hands and knees, stand with support, and

take steps when you hold both his hands. He does not

have any speech, but Teddy is learning to sign and use

a picture board. He spontaneously uses about twenty

signs, and knows many more when prompted. He is

starting to do simple knob puzzles, and he loves to

read books. He also loves to watch videos; this

month's favorite is the Big Comfy Couch, which makes

me long for the days of Elmo and Barney!

In general, Teddy is a very happy and sociable kid,

which makes it easy to be his mom. I worry the most

when he is sick, as a simple cold can be enough at

times to land him in the hospital. As I look toward

our family's future, I honestly feel that Teddy will

always be dependent on us, which is hard to imagine,

but I am not yet giving up on the possibility that he

could manage in " the real world " with some type of

minimal assistance. Oh, if we only had crystal balls

to know what the future holds!

It is nice to have so many new members with us. I

could not have survived the past two years without

this group; it is a major source of information and

emotional support for me.

Meg and Teddy, 2, BPP

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