Re:Newbie, Reuben born 2 May 2007, Yuka fantastic help

[Guest guest]

,

Congratulations on the birth of your son Reuben. Our son Cameron (dob

3/4/02) was undiagnosed for 18 months. We knew he would have challenges

due to seeing his bilateral cleft lip on the ultrasound but after his

birth his CHARGE issues appeared - hearing loss, lack of balance, poor

muscle tone, feeding issues, etc. I just referred to his condition as

" cleft plus " . But it was nice to finally have a name associated to his

challenges and most importantly an online community to go to for

questions and moral support. Cameron did have a g-tube for 2 1/2 years

and reflux but never required the additional surgery. He got the g-tube

when he was about 6 months old, I do wish we'd gotten it sooner but he

didn't develop any oral aversion thankfully. For me, having a device in

my child was an emotional sadness, but really it was so much better

because he couldn't throw it up.

This is a wonderful list filled with compassionate, knowledgeable

families. I was glad to read that you'll be at the conference. Look for

us, my husband is 6' 7 " - you'll probably see him long before notice us.

You'll be in our prayers tomorrow.

Mom to Cameron, 5, CHaRGE and , 7

[Guest guest]

six foot seven??? my goodness even if you were 3'3 " and factoring in charge

Cameron should be a tall one eh?

Cole

>

> ,

>

> Congratulations on the birth of your son Reuben. Our son Cameron (dob

> 3/4/02) was undiagnosed for 18 months. We knew he would have challenges

> due to seeing his bilateral cleft lip on the ultrasound but after his

> birth his CHARGE issues appeared - hearing loss, lack of balance, poor

> muscle tone, feeding issues, etc. I just referred to his condition as

> " cleft plus " . But it was nice to finally have a name associated to his

> challenges and most importantly an online community to go to for

> questions and moral support. Cameron did have a g-tube for 2 1/2 years

> and reflux but never required the additional surgery. He got the g-tube

> when he was about 6 months old, I do wish we'd gotten it sooner but he

> didn't develop any oral aversion thankfully. For me, having a device in

> my child was an emotional sadness, but really it was so much better

> because he couldn't throw it up.

>

> This is a wonderful list filled with compassionate, knowledgeable

> families. I was glad to read that you'll be at the conference. Look for

> us, my husband is 6' 7 " - you'll probably see him long before notice us.

> You'll be in our prayers tomorrow.

>

>

> Mom to Cameron, 5, CHaRGE and , 7

>

>