rollcall

[Guest guest]

My name is and my 3yo has diffuse bilateral PMG. She is totally

dependent on others for all things and can do nothing for herself, except suck

her left hand. Her smile and curly hair melt hearts and draw many comments, and

she continues to be a very sociable little girl who enjoys a variety of sounds

and loves cuddles (from anyone).

Her cp is causing her to arch her back such a lot and I believe scoliosis is

setting in. She snores badly for periods when she is awake, and hopefully next

week's sleep study will shed some light on this issue. Today it took me 10 mins

to get her breathing well enough to leave the room to get her meds and

breakfast. It is worst when she is just waking up in the morning, but also

happens during the day, upright or reclined. Her reflux has worsened in the last

2 weeks so increased her meds as of today.

Seizures have changed a bit. She is now having many simple partial sz's

which up till now have not been very common for her. Complex partials are about

the same from what I have observed, and the big ones are still not happening

thank goodness. Tonight it occured to me that she is also having myoclonic

jerks. At least that's what I think I am seeing. The limbs and head, in fact it

seems like the entire body, jerk once severely, a bit like a startle reflex, and

it may be repeated a few times over the next few minutes. Any of you able to

confirm my hunch? June 19th is when she begins the fast for the ketogenic diet.

Early ed. program is great for her and she seems to enjoy herself. Comes

home from school so tired those days. Just wish someone could get her there and

back some days. Travelling takes up so much of my day.

I'm off to Malaysia for 12 days visiting a friend 14 - 25th May. Not sure if

I'll set no-mail option or if I'll subscribe on my friend's email address while

I'm there. I'll feel so lost without having all your posts to read each day,

like leaving family behind. I'm going on my own, by the way, no kids and no

hubby, but the funny thing is that as it gets nearer to the date I feel less

like going. Bit nervous about flying and dont want to leave the kids for so

long. I know it will " do me good " , as everyone is so fond of telling me, and

I'll be okay when I get there I'm sure. Hannah will be in residential respite

for the first 8 days I am away and the second week Gavan will be off work to be

Mr. Mom.

in Melbourne, Australia

(mum to Hannah, 3yo; polymicrogyria, uncontrolled complex partial

epilepsy,spastic quad.cp, cortical vision impairment, global dev. delays, bard

button,and a brilliant smile)

[Guest guest]

Hi, my name is Kim and my son is one of the 2 Teddy's on our loop. More

confusing is that they are close to the same age and doing a lot of the same

things :-) Teddy was diagnosed with Lissencephaly at the 5 weeks old, this

was later changed to Pachygyria and then at the Dallas convention Dr.

Dobyn's and Dr. Guerrini changed it to Diffuse PMG. The doctors did agree

with the genetic testing which indicated that Teddy's PMG happened due to

some twinning problem (their cords were tangled). Teddy is currently

learning to walk up and down stairs. He'll be attending our town program 4

days/week come September and they want to start a program called PECS for

communication.

His twin Hunter is health and fine and has been a great roll model for

Teddy. Both Hunter & Teddy are happy little guys that get into mischief

together but overall are a lot of fun. They have two older brothers BJ (11)

and Duncan (10). BJ just loves both the babies. He's given them bottles,

changed their diapers, gives them piggy back rides, even takes showers with

them. Duncan has had some problems but mostly in the area of sharing toys.

Apparently he remembers that some of the toys used to be his and doesn't

like to share them(doesn't want to share his mommy either). But they both

show such joy when they're able to make Teddy or Hunter smile that it warms

my heart.

My husband, Bob has a new job that's 60 miles away, but he's home earlier

than he used to which is good. While he doesn't want to be involved with

the loop he does go to whatever meetings, PPT's, etc. that I request he

attend. He came to the Dallas convention with me and took care of Teddy so

I could sit by the pool at 2 am with the people from the Lissencephaly Loop.

Kim Raub (mother of Teddy - 2 1/2 w/diffuse PMG)

He uses sign language, runs around, rides a big wheel,

has trouble chewing & swallowing solid foods,

has 1 identical twin (without PMG), 2 big brothers

and a busy Daddy. We live in CT.