Re: update on Kelsie

November 16, 1999

Kerrie, Kelsie is my granddaughter. She was also scheduled for an ABR but the

doc postponed it due to the fluid in her ears.....said the fluid would skew the

results and he would not get an accurate reading. She also cannot stand loud

noise. We had all tried for months to get Kelsie to say words. One day her

" little " brother, Ken (Kelsie is 2 and Ken is 1 but has already passed her in

weight) was crying and out of the blue, she said " hush, ken,ken, hush " .

Sometimes the similarities are astounding. Kelsie also uses a walker and goes

anywhere she wants in it. Her physical therapy has really helped her strength

and muscle tone.

Please let me know things go with your daughter.

Barbara

Nana to Jarrod 7, Savannah 3, Kelsie 2 ChArGE, Ken 1

Mom to , ,

wife to

update on Kelsie

Well, we've had a looooooonnnnnnggggg day with Kelsie's doctors. I

drove 65 miles to Kelsie's home and then we drove another 70 miles to

Birmingham. But we actually got to the first appointment thirty minutes early

so thought that was an excellent start for a good day. YEAH, RIGHT! First,

little miss Kelsie gave absolutely NO response to the hearing test even at 75 dB

(extremely loud.....at work, we wear hearing protection for anything over 55

dB). However, before we could freak out, the nurse told us that she doesn't

think it's because Kelsie can't hear but was totally ignoring the whole

thing......she just didn't want to cooperate so she didn't. Kelsie is 2 years

old, by the way. Then, we did get some unexpected bad news. The tubes that

were put in back in March (by another doctor) have already come out and she had

fluid in both ears. So, she is scheduled to have the tubes replaced on Nov 30.

Doc said no use to try to do any more testing until then cause nothing will show

except the fluid. BTW, the cat scan done two years ago that would show the

inner ears has disappeared so that will have to be redone also. We were hoping

we could finally get some answers about the inner ear because of Kelsie's

balance issues. Anyway, that's where we are on the ears. This all took only 4

hours.

From there, we have 20 minutes to get across town to the eye clinic. We

made it, but the doc didn't.....he was in surgery. He finally got there two

hours later......but, believe it or not, he actually apologized for being late

(that's never happened before). He dilated Kelsie's eyes and after walking her

for about five miles, I finally got her sleep (no kidding, I told the nurse not

to charge us by the mile). Anyway, with her asleep, the doc got a really good

look in both eyes. We now know a lot more about the colobomas and central

vision issues. He took a lot of time explaining and talking to us.

My daughter said the way to go must young, aggressive doctors. We

really liked both doctors, both had taken the time to familiarize themselves

with CHARGE and both seemed to want to helped. We haven't met many like that

before.

Hope, we do live in Alabama. If you would like to email me privately,

we can talk about your friend. There are no support groups here. In fact, we

were told when Kelsie was born that she was the only CHARGE baby in the state.

My daughter and I will be glad to talk with your friend. This list was an

answer to a prayer for us. We have had no one except the family for the past

two years.

Sorry for the length.....should have warned you.

Barbara

November 25, 1999

Barbara, Hello again! Amy just had her tubes put in her ears this morning. we

got there at 9:30 am and left by 1pm. The surgery only took 10 minutes from

start to finish. They drained as much fluid as they could and placed the tubes.

Everything went nice and smooth! We got home around 3pm and she's been all over

the place in her walker. Playing and chatting. I can tell theres abig difference

with her hearing me when i call for her. and she's repeating words a little

clearer. i guess the rest wil drain over the next couple weeks. She has to go

back for a check and to test her hearing again Dec 20th. We actualy got a

little get away overnight. we brought all 3 kids and stayed at the marriot

suites across the street. Because Amy had surgery at the medical center we got a

discounted rate on a 2 bedroom, 2 bath, full kitchen suite. The kids loved the

pool and we all had a good time. Its called the Rest Easy program. Area hotels

give you a discount of up to 65% off. This is the second time we've stayed here.

We try to include everyone with Amys surgeries We go as a family andit seems to

take the stress off for everyone. Any way didn't mean to babble on...Amy seems

to have done just fine! :-) Please let me know how Kelsie does. I'll let ya

know how Amy does with her hopeful speach improvement and the results when they

retest her hearing! Kerrie mom to 5, Amy almost3 (ChARgE) and 7

months.