Hello, my name is April. I am a mother of a 3 yr old with weaver
syndrome. He was diagnosed about 1 1/2 trs ago now. I thought his
diagnosis would explain more of the health issues that he has, It
does explain most everything else about him. He is doing okay for the
time being. I cannot wait for another month or so. His health seams
to be much better in late spring till late fall. He is a large boy,
often mistaken for being much older, usually 5-6 yrs old. He is a
little delayed, his age equivelent is about 20-22 months old. He also
has severe behavior problems (outbursts). He has a 1/2 brother, age 9,
(he is not very much littler than him)and a 1/2 sister age 7. They
are both of normal size, etc.
Devon, my son, goes to theripy very frequently, if he doesn't go it
seams that he regresses. He has speech, ot & pt 2x's a week. We live
in a very rural town called Hunters. We are 1 mile from Lake
Roosevelt AKA the Columbia River. It is about 80 miles one way to
Spokane WA, that is where Devon has his theripy. All of his
specialists are also in Spokane, moslty at the childrens hospital. He
is going to be seen at shriners for his walking and a gait assesment.
Devon has very low muscle tone that effects everything!! He is tube
fed due to the low muscle tone and coordination that he has in his
swallowing.He has also had problems with his digestion and
stomach.Devon has also had a couple of cysts removes from his ear
drum that was causing some hearing problems.
I wanted to share a short version of what he has been through (10
surgeries at least)and see what other kids have had problems in and
if they get better. Please fill free to email me at
april@... if any one wants to talk or share their story.
(sorry if everything is mispelled,I'm used to spellcheck)