Welcome Bronwynne &

[Guest guest]

Dear Bronwynne, and beautiful !

Welcome to the CHARGE list! You have just discovered a new " family " . I

don't think many, if any, of us are Deaf on the list, but most of us are

parents and we have all had similar experiences in the medical arena. My

son is 22 years old and he has CHARGE.

is SO FORTUNATE that he has been exposed to sign language since

birth. He is at a real advantage! As hearing parents, it was so difficult

for us to get started learning sign language, much less teach it to our son.

It added another dimension to care for him when so much medically was

happening to him in those early months! Lucky, lucky ! It's so cool

that he is signing........ Mamma, Dadda, Fish, and Light.

I understand the frustration in having access to information when with the

doctors. My son, Andy depends on sign language too for communication and I

sometimes " jump in " during an appointment and " help " the sign language

interpreter when I know the information conveyed is incorrect or missed.

Maybe not too ethical, but selfishly, I want Andy to have the same

understanding I do when we leave the doctor's office.

Another way to get correct information is to ask for a written report after

each medical visit. I know that doesn't help at the time you are with the

doctor, but at least the information is written in black and white. Ask the

doctor if you can contact him/her by email with questions after reading the

report.

Welcome again to you and your precious !

Sally (Bill-24, Andy-22, Liz-16)

From: BronBuxton@...

> Subject: We are new members as well

>

>

>

> I joined a few days ago and have been reading really interesting comments.

>

> Fristly my name is Bronwynne (Deaf) married to Buxton (Deaf). We

> received the most beautiful boy, on the 4th November 2002. He

> will

> be 1 years old in a few weeks time. He has been diagnosed with Charge.

>

> We found out that he had some complications a few months before he was born.

> It was a hell of a shock finding out. The doctors and other specialist

> repaired us for the worst. We were told that had two holes holes in

> his

> heart and would need heart surgery. He would have unilateral cleft lip and

> cleft

> palate and other problems.

>

> When he was born with unilateral cleft lip and cleft palate + two holes in

> his heart. We fell in love with him.

>

> During his 9 weeks in Special Care Baby Unit he had feeding and swallowing

> difficulties, confirmed on a videofluroscopy. He had a feeding tube down his

> nose to his tummy for 9 monthsŠ We eventually had to have a gastrostomy

> tube in August. What a huge difference - he is gaining more weight and doing

> really well. Before that he often vomited and lost weight.

>

> We have been told that he has some hearing lost and has glue ear. He is

> wearing hearing aids and I am not really sure if he is responding, as he

> should

> not sure. Having the Teacher of the Deaf to see him tomorrowŠ

>

> He has already signed a few words, Mamma, Dadda, Fish, Light (his favourite

> sign, pointing to the light all the time for me to put on and off), now

> learning Yum Yum. He is visually alert and crawls a lot on his backŠ.

> Bouncing like

> a frog on his back going backwardsŠ. Funny but that is his getting around. He

> has just started to learn to sit but need a lot of supportŠ

>

> My advise to anyone who has a charge baby is to take one day at a time and be

> strong for the child and be very positive which is not easyŠGo forth and not

> give up.

>

> I have met two families who has charge child and been very helpful and now on

> this mailing group and very interesting stuff being saidŠ

>

> Are there any deaf parents who have charge child, baby? I would be interested

> to know how many of us who are deaf are in this situation as we have problems

> with understanding doctors and not always easy to get a Language interrupter

> (Signer)Š very frustrating!!!

>