Re: More on

February 3, 2007

Dear ,

It's amazing to see that in your wisdom you encountered and addressed so

many situations and

developed so many attitudes that we see reflected onlist today. and I

also came

almost 21 years without the benefit of the list-but it sure is just like

coming home.

I marvel at the sameness we all share, and the even deeper definition of

family.

One such similarity made me laugh out loud. It's about that extra 1/2 inch.

Never, Never omit that 1/2 inch. That hard fought for, hard won, grande

finale, spire

on the faith, crowning statement of achievement 1/2 inch whose message

answers back,

always, " More than " .

;-)

in Ma. (, 21 yrs)

February 3, 2007

Since has made it past most of his medical crisis situations I

want to give a little more info on some of the things he has gone

through.

did not get his CHARGE diagnosis until the age of 14. It was

all by chance. Our Ear, nose, and throat doctor happened to come

across an article in a medicle buletin on CHARGE. There was a picture

of a little boy in the article that could have been 's brother

with the simalarities. So you see from age 5 till 14 we were dealing

with doctors who had never heard or knew anything about CHARGE. They

just addressed medical problems as they became known. It wasn't until

age 14 that we finally made it to an endocrinologist. He was in the

same hospital that we dealt with and it took 9 years to make it to

him.

at this time was extremely small for his age. 's skeletal

growth had always been behind by 2 to 3 years from his cronilogical

age. This doctor had treated CHARGE kids before. He started on

a low dose of tetosterrone once a month. Gradually increasing it so

as not to cap 's growth. To 's joy he started to grow and

change. He still gets the tetosterrone every month and is now 5'

61/2 " tall.

Please know that you can never stop pushing and asking questions.

This was all 20+ years ago. We didn't have a computer. Our hospital

was one of the largest in Central PA. We dealt with some very good

doctors and there were a few asses along the way. Trusting the

doctors isn't enough. You have to trust yourself and those gut

feelings.

I'm sorry to say that being in the institution keep allot of

his problems from being addressed. His stomach division could have

been reversed years before it was. The result was lost his

ability of good and clear speech because the muscles used for speech

atrophied. had extensive speech therapy until he reached the

age of 17. He was sucessful on pronouncing some words but had to put

allot of thought into those single words. I would love to listen to

him when he was playing in his room. He would gibber jabber and you

could make out some words out of it. He would even change the pitch

of his voice for the different characters in his play.

's hearing loss was conductive. All testing while he was in the

institution diagnosed total hearing loss. When he first came to live

with us a bomb could have gone off behind him and he wouldn't

respond. After a few months he started reacting at loud noises. What

we found out from the phychologist working with him was 's mind

had created complete deafness to deal with the institution. Once he

came to live with us his brain left go of that defence mechanism. His

hearing improved some. With his aides on he can understand allot of

your speech if he is looking at you and you keep it simple and short.

At 8 years doctors preformed what i believe is called (stapies?)

surgery on his ear with the most profound loss. They had determined

that the conductive bones were fused. They replaced piece of bone

with wire so that vibration would make it to the nerve. They said it

would take a week or so after surgery before would register

increase of hearing. Well 2 weeks after surgery he started being

bothered by noise. It was plainly evident he was hearing better.

Unforunatly it was short lived. Reaction left as quickly as it came.

Doctors found that scar tissue had formed around the wire. They could

not guarantee it wouldn't keep happening with any repair surgery. We

chose not to take the risk of surgery again.

Then at the age of 11 his doctor told us of another surgery. They

wanted to put a hole into the disk before the nerve. We talked it

over with and opted to try again. During this surgery they

found something across the disk they could not identify. The doctor

Stimulated the area and found it to be a fascial nerve. It should not

be there.....The risk of nicking the nerve was to great and the

doctor did not proceed with the surgery.

I'm sure that the subject of lack of nerves or displacement of nerves

has come up here. Doctors not being aware of this fact about CHARGE

kids can cause problems. Nerves were nicked during 's heart

surgery when he was a baby. Thanks to God he survived the ensueing

complications.

Some other physical involment has is he is short a vertabra in

his neck. He has a slight curvature of the spine with 3 vertabra in

his back being fused from the time of birth. (not surgery). His chect

is concaved limiting the space inside his chest. He can not fully

inflate his lungs so can get out of breath very easily. He can and

does ride a bike though, rides horses (by himself and even trots). He

does well with what vision he has. The only time you notice his loss

is at night or on uneven ground. He has a cane but he is really

stubborn about using it.

About that stubborness, ey, ey ey. But I really don't mind it. I

believe it's his stubborn will that got him this far. He is a fighter

and my hero.

mom to (31)

February 3, 2007

,

We are definitly mother soul mates.....LOL Through all the pain and

trials of getting my boy to adulthood I have been the one to learn.

has been my teacher. He's taught me to extract ever once of joy

in every moment of a day. Through it all he has remained a loving

being with the kindess heart in all the world. This past Mother's day

he (on his own) bought me a beautiful ring. I cried, he put his arms

around me and we stood there alone and cried together. Were we had

been and were we had come was around us and all that was left was a

pure joy of being in that place and time. I truley belive that Angels

are smong us. is my Angel.

mom to (31)

>

> Dear ,

>

> It's amazing to see that in your wisdom you encountered and

addressed so

> many situations and

> developed so many attitudes that we see reflected onlist today.

and I

> also came

> almost 21 years without the benefit of the list-but it sure is just

like

> coming home.

> I marvel at the sameness we all share, and the even deeper

definition of

> family.

> One such similarity made me laugh out loud. It's about that extra

1/2 inch.

> Never, Never omit that 1/2 inch. That hard fought for, hard won,

grande

> finale, spire

> on the faith, crowning statement of achievement 1/2 inch whose

message

> answers back,

> always, " More than " .

> ;-)

> in Ma. (, 21 yrs)

>

February 3, 2007

,

's story is an amazing testament to the power of love. I am so glad we are

getting the whole thing!!

thank you.

pam