--- In WSSA@yahoogroups.com, "kakane13" <foodykane@...> wrote:
>
> Hello! I have posted before but it's been a long time. My
daughter
> Maura was diagnosed with Weaver's when she was 15 months old. She
is
> now 2 1/2 and is 50 pounds. She has had heart surgery and is in
> remission from neuroblastoma. I know that there are other cases of
> neuroblastoma in Weavers and was curious if any of the members have
> children that have had it. Maura also has issues with the way her
> brain developed and doesn't properly move her left side and
currently
> doesn't walk. We have made a lot of progress and see her possibly
> walking someday. Since she doesn't walk she obviously isn't close
to
> potty training. Pampers recently started making a size 7 diaper
> (cheapest place to find it is on www.amazon.com) but I don't know
how
> much longer she'll be in it. We were told at the doctors that the
> smallest depends was her option, I was curious if anyone else knew
of
> any other options of diapers. I also saw in one of the email
strings
> that there are other support groups of other overgrowth syndromes,
> and was curious where these were.
>
> I agree with one of the posts, I wish more people posted. I feel
> like I'm on an island with Maura's issues and would love to chat
more
> with people who understood.
>
> Hope to start a chat!
> Hugs and prayers,
> Kate and Maura (North Carolina)
>
Hi Kate, my name is Jenny and my son Earl was diagnosed at about
1yr. Luckily he does not have many of the health issues as oother
kids with Weavers but every once in a while the specialists still
like to poke and prod. I feel bad about all the things the kids go
through. I work in a nursing home and for the longest time I couldn't
let Earl see my in my scrubs or he would have a terrible fit and
wouldn't even come to me. He's 3 now and we don't see the doctors so
much anymore. He started walking at about 2 but I dont even know how
to go about potty training because we're still trying to find a way
to communicate with him. I just started using a picture book so he
can show us what he needs, but he's not catching on yet. i find with
Earl that he has to do things in his own time. It's frustrating but
I'm learning to just let him be who he is. His father and I are both
stubborn so it would only make sense that our kids are pretty strong
willed. If you don't mind me asking, what was your pregnancy like? I
had such a terrible pregnancy and was flagged high risk when iwas
about 6 months. I'm curious if other moms and babies had many
problems. It is nice to bounce things off of other parents who know
what we're talking about rather than doctors who very often have no
clue what it's like raising these cute "little giants". I hope to
hear from you soon, and best wishes to you and Maura.


Yours,
jenny