Roll Call

[Guest guest]

Hi to all -

This Andy, father to age 2, who was diagnosed with BPNH

(short name for heterotopia) with a patch of polymicrogyria back in

the fall of 1999.

With the assistance of therapy, (both at home and in a weekly group

session) and the hard work of his devoted mom (Sally), has

made great strides over the last several months that has given us

some much needed hope as we seem to go thru repeated long periods

when all progress seems to halt.

Mattie has started to walk with the aid of a walker and is enjoying

his independence and seems to be understanding a lot more; if we ask

him to, he'll pick out a book he wants to read or stack a few blocks

-- he also likes to 'walk' upstairs with our assistance and is

starting to stand for a second or two on his own and also will walk a

bit if we hold one hand.

On the other side - is virtually non-verbal and that is a

real concern. During his first year he seemed to be able to utter a

few words like " pop-pop " and " ma-ma " but these have seem to go away.

He also has trouble in transitional situations or whenever we need to

speak up to others - like at a deli or fast food drive thru or a

neighbor passing by.

As moves from baby stage-to-toddler we are finding it

increasingly difficult and heartbreaking as other kids his age are

beginning to run around and play games. We have been fortunate that

has been seizure free to date but know that we run the risk

everyday of an occurrence.

Our family was blessed with an addition (Audrey) two months ago and

has seemed to take a keen interest in her habits. Everything

seems 'fine' with her so far and we can sense that is

learning things from the baby already.

Our best wishes to everyone and their unique challenges...

Andy & Sally parents to , age 2 , BPNH with a patch of PMG

& our new addition Audrey, age 2 months.