Roll Call

[Guest guest]

Hi. Jill here, mom to Audrey, 3 1/2. Audrey has PMG in the occipital

and parietal lobes of her brain. When Audrey was born she had a

difficult time breathing, couldn't nurse and had some partial

paralysis on the left side of her face that we noticed when she

cried. This led to an MRI at 8 weeks and a diagnosis of PMG. She

was stiff in all of her joints, especially her jaw and knees, and we

started PT right away. She crawled at 10 months and finally walked

(poorly) at 2 years. Still working on her walking. It's a hip

swaying, bowlegged walk - but it gets her around, and she's falling

down less now, too.

Audrey has reflux disease which made it tough for her to gain weight,

but it seems to be improving and she's up to 28 pounds, growing and

looking heftier. This just makes my year!

We're still working on self-feeding. Audrey has such a tight jaw and

a small mouth and recessed chin, so there's not much of a target to

aim for. She can't chew, but bites with her front teeth and eats

soft foods or foods that dissolve easily along with lots of pureed

foods. She also drools pretty much all the time she's awake.

Her speech is pretty limited to just 15 or so words that don't

require much tongue movement. But she signs well and her dad and I

are taking classes in ASL to keep learning so we can teach her.

Audrey's in a special ed preschool that she loves and we're fortunate

that her teacher knows sign and her class focuses on speech.

Anyway, that's plenty for this roll call. I just want to say to all

thanks for the sharing and the support!! And Moms - remember to give

to yourself, too!!

Take care,

Jill - Mom to Noah (20), (17), a temporarily-adopted teenager-

in-distress (19), and Audrey (3)