Hello everyone. I am so sorry I have not gotten back to you,
especially you Mary! Everytime I log on here, it seems that I am
having to create a new account, very frustrating!! My son is now a
little over 4 1/2 yrs old. He is doing very well considering his
rough(to say the least) fisrt year or two. He is large for his age
still, and has many developmental delays and a few other health
concerns and on going problems. I would love to chat with anyone who
would like to talk. I remember how exited I was when I found this
site. Just to know that we(my family) was not alone and to know that
other families where going through very simular situations!!! Devon
is affected more than most other weaver syndrome kids, and possibly
by another syndrome or two. We see a two handfulls of doctors on
regular basis. Life has changes in a way that words are unable to
describe. I am sure a few of you know what I mean. I am a little
nervous putting my home phone number on this page, but I am going
to. We live in N.E. Washington State, almost to the Canadian border
(about 70 miles away). Where are the rest of ya? I know of a weaver
syndrome (adult now) who lives in this state, only on the other
side. And of one in Colorado(adult now).
My home number is (509)722-3364 and I only speak English. I am
usually home if I am not making the 160 mile round trip to Spokane
that we make twice a week to see Dr's and theripist. I would
absolutely love to talk with you and share concerns stories, maybe
tears and laughs as well. How I look at it is.. From the last time I
was told there are only 38 confirmed Weaver Syndrome cases in the
WORLD!! The doctors do not seem to know a bunch about what to expect
and how things will go, so lets write our own book. What I mean is
to talk, compare and support eachother in ways only another Weaver
syndrome family can do. I look forward to hearing from someone, and
I can call you and maybe do a conference call so two or tree of us
moms can talk at the same time.
Waiting for you...
April, mother of Devon