Roll Call

[Guest guest]

Hi Everyone

Our list is growing by leaps and bounds. I guess PMG isn't really so rare

or us PMG parents are just computer geeks and finding each other faster and

faster. I know the Internet was the first place I looked for help.

Anyway, since this party is getting bigger, I suggest we take a roll call

now and then so we can get to know each other. They do this on the Liss

Loop and I think it works well. It's completely optional but I strongly

encourage everyone to participate. Knowing each other is what makes this

support group work! (Repetition is the mother of memory.) It doesn't have

to be a novel, just an introduction and a little about what's going on

currently would do - really anything goes, just speak up! I may set up an

automatic email for a roll call every 2 weeks so be ready and beware.

Thanks and here goes for me.

Hi, my name is and my daughter has PMG diffuse (or so they

say). She is in the other room watching TV, rolling about, playing with a

toy and soon to be crying out for company so I'll make this fast. We live

in California where it's very rainy at the moment. Our neighborhood came

very close to flooding last night - it was rather exciting (since it didn't

happen). was diagnosed at 10 months and we pursued the diagnosis

because she was quite delayed in developing and her head was rather large.

I was hoping (and in denial) that it was nothing and that she would be a

late bloomer. I couldn't dare to think it would be anything else. The good

parts are that she is seizure free and an aggressive oral feeder, although

she needs pureed foods. Her speech is non-existent except for expressive

squeals and cries. She is very alert and loves her sisters - they're her

favorite toys. We are currently working on the PT end of things - sitting,

crawling (which she doesn't do) and as soon as she get AFO's, standing.

Got to go . . . someone's hungry. Hope this roll call idea helps our group.

(mom to - 19 months w/pmg)