new member

[Guest guest]

Good morning. My name is , I am 54 years old, live in Florida, and I

am new to the group. I have retinal colobomas, Ataxic cerebral palsy which

affects my balance, and genital apoplasia, and growth hormone deficiency. I did

not go through puberty until I was 20 and cannot have children, although I

adopted a daughter. I am a geriatric social worker.

For over 50 years I always wondered if there was a connection between these

problems. After hearing about CHARGE and reading up on it, I feel this may be

the missing link and want to learn more. Is there any male adult in the

group with these medical issues? I look forward to participating in the group.

I

am also part of the Coloboma group. G FL

In a message dated 3/19/2007 6:44:52 A.M. Eastern Daylight Time,

kawfolks@... writes:

Hey ,

Four years old is when Kennedy got her BAHA and her behavioral issues. We

started her on medication and implemented some behavioral techniques 'round

about that time and things settled out, but the " behavior period " of K's

life was the toughest thing so far as far as day-to-day living. I hope she

LOVES the BAHA; it's been a real success for Kennedy - she wore it for a few

years before getting the implant. Please do let us know how she makes out.

On 3/19/07, Lee <_missbwith3@..._ (mailto:missbwith3@...)

> wrote:

>

> Hello everyone. Well, we have been away for a while and I am way behind

> on messages. As much as I would like to go back and read all of them, it is

> not going to be possible. Hopefully I can skim through and get a feel for

> what has been going on with everyone. I hope all of you have been doing

> well.

>

> A little update on . She just turned 4 last month and is doing

> really good. I actually looked at her the other day and for the first time

> since she was born, I just saw a typical little girl. We seem to have some

> of those moments now and then, but most of the time, there is something

> CHARGE related going on. We are traveling Thursday to get her BAHA

softband

> loaner. They have been doing some testing and want to try it for a while.

> She keeps asking me when she gets her BAHA so I think she must have liked

it

> when they tried one on her. She has had a few colds, and was in the

hospital

> a couple of times since November, but otherwise healthy. She has started

> seeing endo because she has dropped off the curve on the growth chart. They

> have done some testing, but so far nothing has shown abnormal. We go back

in

> a few months to see where we go from here. She is very sassy these days and

> thinks she is the boss of everyone. We still have many behavior issues and

> some days are

> really bad. Phil has a huge scratch on is face from one of our escapades.

> We are trying to get a handle on it, but it's been hard. We have had many

> changes lately and that has not helped.

>

> We moved out of our house and in with my mother-in-law. We were going to

> sell our house and live there for a while, but it just wasn't working. We

> moved back into our house and I went back to work. That has been difficult,

> but we have to make it work. My mother-in-law still has a hard time

> understanding everything with and I tend to get frustrated about it.

> I try not to, but it happens. She seems to think that we have no debt other

> than our house so why can't we afford it on just Phil's income. I have

tried

> to explain the medical aspect to her, but she just doesn't get it. We just

> knew that living there was not going to work out. Now that I am working, I

> feel like I am not able to keep up on all the " stuff " . For example,

> we have and IEP meeting this week and I am not really prepared for it. I am

> hoping that as time goes on, it will all become easier. HaHa who am I

> kidding?

>

> Anyway, I am hoping to keep up on the list from now on since all of you

> are what keeps me sane. I hope everyone is good and it is good to be back.

>

> Lee

> Mom to 4 yrs CHARGE, Marissa 6 yrs, and Dalani 11 yrs in a couple

> weeks

>

>

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>

> [Non-text portions of this message have been removed]

>

>

>

--

" It is far better to grasp the universe as it really is than to persist in

delusion, however satisfying and reassuring. " --Carl Sagan

[Non-text portions of this message have been removed]

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