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Hello, I remember Maura, or hearing about her. My son, Devon, will be 6 in October. Much of what you say about walking sounds familiar. Devon held his arm(left) held up when he did start waking. He started right about your daughters age now. It will come, just latter, as you have probably noticed about all the other milestones as well. Devon is a little over two years behind developmentally. I have mentioned another site for overgrowth children. It is actually for Soto's syndrome. Soto's syndrome is very close to weavers, many of the same problems, the main difference if facial features from my understanding. Soto's is said to have a long narrow face, while weaver kids are thought to have a rounder, fuller face. I am not so sure about that, because it seems my son has a long round face. He does not have any body fat, but is rather lean,
I had to chuckle to myself when I real your little girl being 50 LBS. Devon has always been big, now at almost 6 he
weighs 80 lbs wears a size 5 1/2 shoe in men's, but has to be special made because of the width. I have a 12 yr old son as well, and Devon is not much smaller than he is, actually, Devon's hands are bigger and their feet are the same size, except Devon's feet are so wide.
I am curios about the heart issues your daughter has or had. Devon was found to have a ASD/PFO when he was about 2 yrs old. Cardiologist thought it would close on its own, but the pulmonologist says that is what she thinks is causing the breathing problems. Last week he did a holter monitor for 48 hours, and I am waiting for the results. He had an EKG(?) a couple Week ago, and said the QT line was delayed. I am waiting for this doctors thoughts, the pulmonologist wants us to travel across state to go see another children's hospital and their specialists. I hate thing game!!!!
I swore I would tell every mother I found to keep track. What I mean by this is, start a journal. Go
back to all you can remember about the pregnancy(in my case it was horrible!!!) and all the little things you remember. I have heard from older kids moms that you will need all this info for several things (like, SSI when the kids turn 18) and they want dates. I did not understand, because I thought all these surgeries where etched in my mind forever, but they do end up running together. Devon has had over 33 surgeries and procedures.
Does your daughter have sinus or ear issues? Devon does, and he severe allergies too.
If you do not mind, what kind of insurance do you have for Maura? Devon is on SSI/medicaid(state medical) and when the child turns three they will buy diapers/pull-ups. Devon is currently in a depend type pull up and they fit okay. We did have several different types sent to us, and choose the one that fit best. What kind of specialist does your daughter see? Devon has a list, although it is getting a bit better as he gets
older!
I hope to hear from you soon, look up Soto's syndrome in the google tool bar and look for the support group site, and follow it, there are hundreds on this web site!! Soto's has about 650 diagnosed, while weaver only has about 40sh!!!
lots of luv
April
mother of Devon almost 6
in Washington USA
kakane13 <foodykane@...> wrote:
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)
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