Re: New Years Resolution.. info.

[Guest guest]

well my first post went thru so here I go again.. A little info on ..he

will be 7 on March 24..Born with tratology of fallot..profoundly deaf..left side

choanal atresia..colobomas on both eyes (right eye on optic nerve) reflex and

reflux issues now both under control..has had 3 heart surgeries..2 stents and

the valve placement..replacement to follow down the road..alot of the usual

issues that go along with CHARGE...presently attending a deaf / hard of hearing

kindergarten..has come along way and is the happiest kid !! He is such a delight

and my husband and I wouldnt change a thing if we could..We are going in

tomorrow for an eeg , seems to go into uncontrollable laughing fits at

times...is he just a really happy kid or are there underlying issues?? we have

to check it out...but as i said he has made such great progress..his mind is

like a sponge ,he absorbs everything but doesnt really express himself without

adult prompting..working on that at school by

trying out different approaches..he does alot of things that just keep

surprising us and he is really good on the computer...its kinda scary...I think

hes better than me !!!

Platania (

mother to 6)

[Guest guest]

im 21 charger got reflux and hearing probs colabomas growth probs no

hormones and just lots of other stuff mixed up nice to hear bout u and ur

fam

>

> well my first post went thru so here I go again.. A little info on

> ..he will be 7 on March 24..Born with tratology of fallot..profoundly

> deaf..left side choanal atresia..colobomas on both eyes (right eye on optic

> nerve) reflex and reflux issues now both under control..has had 3 heart

> surgeries..2 stents and the valve placement..replacement to follow down the

> road..alot of the usual issues that go along with CHARGE...presently

> attending a deaf / hard of hearing kindergarten..has come along way and is

> the happiest kid !! He is such a delight and my husband and I wouldnt change

> a thing if we could..We are going in tomorrow for an eeg , seems to

> go into uncontrollable laughing fits at times...is he just a really happy

> kid or are there underlying issues?? we have to check it out...but as i said

> he has made such great progress..his mind is like a sponge ,he absorbs

> everything but doesnt really express himself without adult

> prompting..working on that at school by

> trying out different approaches..he does alot of things that just keep

> surprising us and he is really good on the computer...its kinda scary...I

> think hes better than me !!!

> Platania ( mother to 6)

>

>

[Guest guest]

,

Welcome! sounds like a sweetheart. Reminds me a bit of my son,

especially with the laughing fits and backseat conversations he can't

explain. Those drive me a little bit crazy (okay, a lot crazy, I must

confess). His behaviors sometimes are almost autistic, also OCD, but

not quite. It's like someone else said recently about the being in-

between abled and disabled. He's not enough of either one for anyone to

be able to pinpoint his needs, let alone provide appropriate services

to address them. That is probably the most frustrating thing of all.

Rosie (Neal, 11, CHARGE; -Marie, 6)