Update on

[Guest guest]

> Seems weird, but I just wanted to cry after getting the news about her

> hearing.

No, it's not weird. I watched my son lose his hearing slowly and gradually

for 11 years, after spending 1 1/2 years just getting him diagnosed. Even

though his loss was progressive, and I knew when he finally did qualify he

would get a cochlear implant (a decision he helped make), that last loss

that made it so he did finally qualify brought me to tears. For many days I

cried. I thought at the time how weird it was, my son finally qualified for

something we felt could give him better hearing and all I sat and bawled

because of it.

And, just so there's no misunderstanding, it's OK to cry about these things.

Sometimes the hand life deals us is crappy, but we still have to play with

what we have as best we can. If you feel like crying, go ahead. When you're

over with it, get on with handling things as best you can. Thank goodness

that at least now you know.

> Well, let's just say I'm glad I went up there.

Some audiologists are definitely better than others at getting reliable

results. I usually watch JD's audiological testing because I know him better

than the audiologist. Once, when doing the speech discrimination test, he

was giving what I knew to be wrong answers, yet he was still getting credit

for it. It was because I knew how his consonants sound and she didn't so she

was giving him credit for things such as cut instead of cup. I finally

suggested she ask him to spell the words also and sure enough, he didn't

have them correct. They were almost correct, but off enough that he didn't

really know the word she said.

Hang in there.

Hugs,

Kay

[Guest guest]

--- Suzette wrote:

Seems weird, but I just wanted to cry after getting the news about her

hearing. I'm also kind of mad.

--- end of quote ---

Suzette - I completely understand how you feel. I know as a parent to two

children with hearing loss, I've gone through " layers " of understanding and

acceptance. When we found out our younger son, too, had a hearing loss, all I

remember hearing our audi say was " I'm afraid I have bad news " - and I honestly

don't remember another thing she said! It was months later when Sammy was

chatting to someone that his speech therapist brightened up and said to her

daughter " LIsten to him talk, and he's profoundly deaf! " . My first reaction was

" Whoa, where did that come from?! Profoundly deaf?! " Of course, if you look at

his audiogram (or try to talk to him with his hearing aids off!), it's pretty

obvious - duh - but I think I just couldn't absorb that until that particular

time in my life.

Certainly you've been dealing with and thinking about your child in one way - as

having a severe/profound loss - and then all of a sudden it's categorized in

another - that's a real shocker! And then add on top of that the possibility of

a profound loss (my own personal worst fear for my children) - yikes!

But also realize that the labels, I think, are pretty subjective from person to

person - the thing to really go on is the audiogram and the dbs and hrzs rather

than the labels themselves.

Be gentle with yourself!

Take care

Barbara

[Guest guest]

is 4.5 years old and I just hope that they find her cochlea to be in

good shape. It's great that you can start so early with . It will give

her opportunities that are priceless. Where do you live?

Suzette

[Guest guest]

Suzette,

We live on Long Island, NY. We are fortunate to be so close to NYC and one

of the most experienced cochlear implant facilities in the country. We too

are hoping that all is well with the interior structure of Em's ears. It

seems like an eternity since we started this journey, but it's only been a

couple of months. I am so anxious to get to the next step, as scary as it

may be.

What type of EI program is in? Em is learning sign right now, but the

school where she is, which we LOVE, is working with our implant center to

develop a CI program for the fall. We are excited to be one of the first

families to take the school in this new direction.

Good luck to you, keep us informed.

[Guest guest]

In a message dated 5/21/00 1:34:31 PM Eastern Daylight Time,

Portia513@... writes:

<< What type of EI program is in? Em is learning sign right now, but

the

school where she is, which we LOVE, is working with our implant center to

develop a CI program for the fall. We are excited to be one of the first

families to take the school in this new direction. >>

We live in Titusville, Florida (the spacecoast) - very close to Cape

Canaveral and the Kennedy Space Center. has been in an oral program

since the beginning of this school year in the SLI (speech/language impaired)

class at a local public school. Before that she was in the Early Intervention

Program for about 10 month using total communication. When she went into

preschool at age 3 we stayed with TC. Her itinerant TOD pointed out that

loves to verbalize, would we consider the oral approach? That was the

first we heard of it so we decided to go with it this year. She has

progressed immensly! She was beginning to use two word phrases at the start

of the school year and now is pretty consistent with three and four word

phrases are emerging. Her articulation is still very poor so I'm hoping that

she'll qualify for an implant. I know that will help her tremendously.

By the way I grew up in Flushing, NY. Haven't been back there since 1982. Let

me know how things go with .

Suzette

[Guest guest]

In a message dated 6/17/2000 12:41:58 AM Eastern Daylight Time,

suzymaners@... writes:

<< As soon as I picked her up, I thought I had seen this before on

The Exorcist. She didn't throw up, but that's about the only difference!

After all the fighting, she slept all day. >>

Jake doesn't do sedation either....he has to have general anesthesia for

CAT's and MRI's. After the last CAT scan he was kicking and screaming as we

left the hospital. Everyone was staring at us as he was screaming HELP ME

PLEASE! He turn upside down in his Dad's arm and locked his legs around his

neck...this at 5 years old. I was so funny later, but wasn't at the moment!

After anesthesia he is an " angry drunk " as the recovery room nurses called

him!

Good luck at the MRI,

Elaine

Cueing Mom to Jake/6yrs/Clarion CI/2-99

[Guest guest]

At 11:25 AM 6/17/00 -0400, you wrote:

>Zach had the same reaction when he had his CAT scan done. It was

>horrible. They used Chloral Hydrate to sedate him with, and I found out

>later that it can cause

>hallucinations, especially in children. I don't ever want to put any of

>my children (or myself!) through that again - there has to be a better way!

Actually, chloryl hydrate is the safest way to sedate a kid...that's why

they use it even on three-month-olds. Yes, it can cause kids to be

combative, or overly tired, or other side effects as they come out of it,

but those are MUCH better than the potential risks and side effects of

other, stronger medications.

If I have to chose between a higher risk of an ornery kiddo vs. a higher

risk of stopping breathing, I think I'll take a kick or two in the shins!

[Guest guest]

I myself will never allow any of my kids to have the

hydrate again. The experience we went thru with

and that stuff---no way! Bring on the other

meds!!

J

--- Kerri Hicks wrote:

> At 11:25 AM 6/17/00 -0400, you wrote:

> >Zach had the same reaction when he had his CAT scan

> done. It was

> >horrible. They used Chloral Hydrate to sedate him

> with, and I found out

> >later that it can cause

> >hallucinations, especially in children. I don't

> ever want to put any of

> >my children (or myself!) through that again - there

> has to be a better way!

>

> Actually, chloryl hydrate is the safest way to

> sedate a kid...that's why

> they use it even on three-month-olds. Yes, it can

> cause kids to be

> combative, or overly tired, or other side effects as

> they come out of it,

> but those are MUCH better than the potential risks

> and side effects of

> other, stronger medications.

>

> If I have to chose between a higher risk of an

> ornery kiddo vs. a higher

> risk of stopping breathing, I think I'll take a kick

> or two in the shins!

>

>

__________________________________________________

[Guest guest]

In a message dated 6/17/00 12:56:40 PM Eastern Daylight Time,

Kerri_Hicks@... writes:

<< Actually, chloryl hydrate is the safest way to sedate a kid...that's why

they use it even on three-month-olds. Yes, it can cause kids to be

combative, or overly tired, or other side effects as they come out of it,

but those are MUCH better than the potential risks and side effects of

other, stronger medications.

>>

My daughter just had her cat scan last week and chloryl hydrate worked

great. She spit a little bit of it up, but was asleep in less than 20

minutes. She slept right through the scan, about an hour and a half total,

and woke up groggy but for the most part happy. She drank her bottle and was

fine, sleeping later in the day for about two hours. She had no problem

sleeping that night. I guess it really depends on the child. is 13

months, by the way.

Jen

[Guest guest]

In a message dated 6/18/00 9:33:27 AM Pacific Daylight Time,

Portia513@... writes:

<< Actually, chloryl hydrate is the safest way to sedate a kid. >>

We have had three experiences with chloryl hydrate, the first time didn't go

well, and that was for the cat scan........ took long time for her to fall

asleep.

the second time for the first abr it was great she was asleep within fifteen

minutes, but was very very hard to wake up, she didn't stay away at all that

afternoon or night.

the third time, she wouldn't sleep with it this was for another abr, we went

into the hospital at 7 am and didn't leave till 6 pm, as we were walking out

of the door at 4 pm she fell asleep, but she fought it hard.........

when kaitee was put under with general for surger on her elbow..... she came

out fighting...... ..... so I am not sure which I would perfer...... none I

guess lol debbi mom to kaitee anne, 3 hearing impaired

[Guest guest]

I will not use hydrate again either. It was awful for my daughter! The

next time I demanded something else be used and they went with a

medicine that was in a suppository and it worked great!!