Re: Update on Saleah

[Guest guest]

Jackie,

Thanks. Saleah is doing better now. Still a little bit stuffy, but the

swelling is gone and she's taking her feeds fine and no tylenol since Tuesday

night. She's even started smiling again (which is good for me to see). She

see's Dr. Brook (cardiologist). He seems to be really good, but she has never

seen anyone else. He saw her in the ICN and twice since she's been out. I'm

feeling better about everything now that I've gotten a little rest. Saleah

slept from 10 p.m. last night until 6:30 a.m. this morning. So I got some

MUCH needed rest too. It's been hard, but I'm doing o.k. Her dad comes home

a week from today. He's been in Southern CA since last October when I was a

month and half pregnant and has never even seen her yet (except pictures).

I'll be so glad to have a little emotional support from him. I just hope he

handles it all o.k.

I'm glad to hear that did so well with her surgery this time. When did

she have it? Was it after we met or before?

Yesterday I met with Colette (don't remember her last name off hand) from

Blind Babies and we were talking about other children with CHARGE because

she's sees another child in Lake County and she said that she thought she had

met you at a conference a while ago.

Well, thanks again for the support. It really does help to have people I know

have gone through similar situations and are there for encouragement. Even

though my family is really supportive, it's just not the same as someone who's

REALLY been there.

Thanks.

Kim

mom to Devin 7 3/4 yrs. and Saleah 4 mo. (CHARGE)

[Guest guest]

Hi Kim,

I hope Saleah is feeling better and not in so much pain. I know how you feel

about having to wait so long for her heart surgery. At first we were told that

Jack would have his surgery at around 1yr old but they have since said that he

will have to be 10-12kgs before they consider operating. I try not to think

about it too much as you can't spend the next few years worrying about it and

it also kind of freaks me out!!!!

In one way I would like to have it over and done with but I know that the

bigger and stronger he is the better for him.

I also had a bad day on Monday. I took Jack along to his monthly check-up with

his paediatrician only to discover that she was delayed on her holiday in

France! There was a locum paediatrician on but it was atotal waste of time

seeing her. No-one else has ever really dealt with Jack and she knew nothing

about CHARGE and could not answer any of my questions.However she said she

would get Jack's paediatrician to phone me when she got back on Tuesday to

arrange another appointment.It is now Thursday evening and she still hasn't

called. I'm going to phone first thing in the morning and try and speak to

her. I have got so many questions to ask her that can't wait for another

month!!!!

Elaine mum to Elise(6yrs) & Jack(14 1/2mths) CHaRGE

Dumfries,Scotland

[Guest guest]

Hi Kim,

Well I know you are disappointed about the cardiology report, however, it

sounds as of the problems are not major. has had two major heart

surgeries..one at 13 mos. and one at 13 yrs. UCSF is on the cutting edge so

to speak of pediatric cardiology and Dr. Hanley, who performed 's last

surgery is incredible. She went in on Thurs. and had surgery that day..the

whole big deal. and she came home the following Tues! She has not had much

pain at all from this and feels much stronger now. Which cardiologist is

she seeing?

Here's hoping Ms. Saleah is less swollen and out of pain by now! It sounds

like the recovery from this is a bummer. I hope the results are better!

Take care,

Jackie Kenley in SF

[Guest guest]

Kim,

I didn't realize your husband wasn't with you, you must be one *pillar*

of strength, I think I would've fallen apart at least a zillion times

without Graeme there. Good luck with everything and it's nice to hear

Saleah is smiling again...

--

Graeme & Weir

gweir@...

http://www.geocities.com/SunsetStrip/Palms/5716

[Guest guest]

Elaine,

Thanks for the support. I agree it'll be better when they're stronger to do

the heart surgery.

How awful to go to the appt and then end up wasting your time. That must be

frustrating.

Kim

mom to Devin 7 3/4 yrs. and Saleah 4 mo. (CHARGE)

[Guest guest]

Kim,

I know I haven't written but have been thinking of you

guys.

Glad everything is getting better, suprising what some

sleep can do to your attitude.

I know the other CHARGEr up here in Lake county.. he's

a cutie. We have been trying to find a way for his parents

to get a puter and get on the list.

TTYS.. maybe we can get together sometime when I'm

down for doc appts.. looks like I have a few coming up for

Ken.

Casey

charge@...

minnow@...

Mom to Dawn 19, Ken 8 ADHD, and 6 CHARGE.

Cobb California

ICQ UIN# 728514

ICQ Pager http://wwp.mirabilis.com/728514

[Guest guest]

Casey,

Let me know when you're down here. We'd love to see you guys again. Saleah

is much better today... We went to the pediatrician and she's 10 lbs. 1 oz.

now (she's actually gained weight since Monday even after the surgery when

they said she'd probably loose a few ounces. Yeah... She's still really

below the growth curve though, but it's good to have a little PETITE girl...

Her smile makes her seem 10 times bigger.

Kim

mom to Devin 7 3/4 yrs. and Saleah 4 mo. (CHARGE)

[Guest guest]

Kim,

She beat to the 10 pound mark by a month...

Give the kids a hug....

Casey

charge@...

minnow@...

Mom to Dawn 19, Ken 8 ADHD, and 6 CHARGE.

Cobb California

ICQ UIN# 728514

ICQ Pager http://wwp.mirabilis.com/728514

[Guest guest]

Kim,

So glad to hear our sweety is munching out like the

champ she is... I have got to get down there for a visit,

am hopefully coming down to do some Xmas shopping

next week (sneaking off while Dave's at work and the

boys are in school <G>) maybe we can get together

then.. If not maybe the week after Xmas.. we could get

together with all the kids.

About the squinching thing.. might be seizures.. but then

it might be her way of deal with a bit of gas ???

used to curl up in a tight lil ball when he was bothered by

gas (and with him that seemed most of the time, I swear

at one time we keep the company that makes

symethicone in biz)

Casey

charge@...

minnow@...

Mom to Dawn 20, Ken 9 ADHD, and 6 CHARGE.

Cobb California

ICQ UIN# 728514

ICQ Pager http://wwp.mirabilis.com/728514

[Guest guest]

Kim,

I am sorry to hear about Saleah's hearing, but she seems like quite an

intelligent little girl from all the other info, so I am sure she will learn

communication through sign language with no problem. We have an old guy where

I work ( excuse me, where I used to work ) that is deaf and was since birth.

He went to a deaf/ blind school and he reads lips great. He won't wear his

hearing aids at work because all the noise annoys him. I always had to run

down the aisle to grab him if I wanted him, but once I got his attention, we

had normal conversations. So, it was a hard blow, but remember, it's just an

obstacle that she will leap over, it's not a brick wall. Hang in there. Love

and prayers sent your way.

Foley,

Mom to 3, , my CHARGEr in heaven, and Jillian 8 1/2 months

w/cHaRgE

[Guest guest]

Michele wrote:

Every once in a while, this CHARGE thing smacks me in the face, too. I

can go along telling myself it's ok, then something happens to remind me

that it's really not -- and never quite will be.

Hi Michele!

Spoken so well (as usual) and so true for most of us I suspect.....

Hi Kim!

We know a couple CHARGE kids with about an 80 dB loss who speak very

understandably and are doing GREAT. I too wonder if appropriate

amplification will improve the threshold to less than 80 for Saleah.

's unaided hearing is 65 dB on the good side unaided. With

a hearing aid, he hears at 20-25 dB on that side. His teachers say

that he has oodles of hearing. Another question would be whether the

loss is greater at higher or lower frequencies. Was this an ABR

test? Response testing is very difficult with a strong tendency to

be inaccurate in young CHARGErs. generally does not

acknowledge that he has heard things in a sound booth until the sound

is much louder than we know (by ABR testing and the fact that he can

hear someone walking down the carpeted stairs with his hearing aids on,

etc.) is necessary for him to hear. Our first experience with an

audiologist was that we were told " had moderate/severe and

profound hearing loss in his left and right ears " one day before we

were told " how much hearing aids could benefit him, but that he could

not be fitted with hearing aids until he was a year or so " . We were not

happy with that answer and so we sought a second opinion from

audiologists who have dealt with a lot of CHARGE and other young kids.

was fitted with hearing aids as an infant and has worn them ever

since.

Good luck!

Cheryl, , (5), (3, CHaRGE)

Okemos, MI

[Guest guest]

Kim,

Hi, this is great news about Saleah eating! Way to go! I'm glad she got

approved for Physio. Sometimes I guess I forget about you guys having

to " get approved " and pay for everything too. I'm so lucky we have

Medicare here in Canada. As for the hearing, I " m surprised they said

they could only bring it to 80, that sounds wrong. Kennedy has a 90 db

loss in her right ear and her aid is supposedly supposed to bring it up

to around 50-60, which is in the speech range. And, she got it on

November 30th, and if I talk on that side of her, just in a normal

voice, I really think she can hear me much better than before. She

turns and looks and her breathing quiets right down <I notice she does

this when she wants to hear something> I think I would check around if

I were you about the aid. 10db at that level would hardly seem worth

it, I think they still consider that profound at 80. Kennedy's hearing

aid is a " Senso " , it is a digital aid that adjusts itself <no high pitch

squealing, unless it's falling out or something>. I hope you have some

good luck with this, I'm hoping there is a better aid out there for

Saleah.

Have a good Christmas Kim!

Mom to Kennedy 10 mos old CHARgEr, 9, 7 and wife to Graeme

New Brunswick, Canada

>

> From: MAY181998@...

>

> Hi everyone,

>

> There is quite a bit to tell today. First of all Saleah is EATING now....

> Yeah... It's been so exciting. She started on cereal last Thursday and two

> days ago started on sweet potatoes. She loves it and is doing so well. She

> will eat about a jar and a half a day. She didn't like the cereal after the

> first day and a half, but loves the vegetables. Next we do carrots....

>

> She got her first flu shot on Friday and we'll be going back for the second

> one soon. She is now 13 lbs 7 oz. She gained 2 pounds in a month and a

> half....Wow... She is still a shorty though. She's only 23 1/4 in. but

> that's ok - she'll be petite. Her breathing has gotten much better - I think

> she's finally over all the bronchitis and flu bugs that she's had for the last

> month. She is drinking her bottles like a crazy. She will see it and start

> to get so excited. It's such a good feeling.

>

> She is FINALLY approved for physical therapy. It has taken months and months

> and months to get this approved. But it finally happened so she starts that

> in 2 weeks. She started yesterday working with Easter Seals for her gross and

> fine motor skills. She loved the guy who came to work with her..

>

> So everything seems to be going great in all these areas, but today we went

> for her hearing test. I have known in the back of my mind that she is deaf,

> but was kind of pushing my feelings down deep and not really believing it.

> Well, the test just confirmed it. She is severely deaf. She does not her

> under 90db. We go on the 29th to be fitted for molds and they told me that

> the best case scenario with aids would be it would bring her hearing to 80 db.

> They will keep the aids on her for 6 months and see what happens and then if

> they do not seem to be helping at all then we'll explore other options. I

> couldn't believe it - I've done so well through all the doctor visits and all

> the bad news and all the hospital stuff and I've been so strong, but today

> when the doctor told me this I broke down. I knew this was going to be what I

> was going to hear today, but when she said it, it hit me like a ton of bricks.

>

> I also have a question tonight. Lately Saleah has been on the floor playing

> and occasionally she'll roll to her side and kind of tuck her arms up toward

> her chin and squinches her face up a little and her eyes start to get really

> small and sometimes they close. I don't know why this is happening. Does

> anyone else experience this? I don't know if I should think it's just

> something normal she does or if it may be seizures??? I don't know... I've

> never seen anyone have a seizure so I don't even know what to really look for.

> Any help would be great...

>

> Well, now that I've written a book, I want to wish you all a very Merry

> Christmas (in case I don't get time to write again before then) and I am so

> thankful to be a part of this family. I don't know how we would have made it

> through some of these times the past 7 months without you all.

>

> Kim

> mom to Devin 8 yrs. in 1 1/2 weeks and Saleah 6 1/2 mo. (CHARGE)

>

> ------------------------------------------------------------------------

>

[Guest guest]

Kim-

Oh, what a relief that she's taking that bottle again -- and eating!!

Yippee!! She sounds super! Now, about the deafness... I can totally

understand the letdown. I actually cried in relief when Aubrie passed

her first ABR on one ear. I had expected a loss on both sides. The

technician looked at me like I was looney when I cried cuz she *could*

hear a little.

Every once in a while, this CHARGE thing smacks me in the face, too. I

can go along telling myself it's ok, then something happens to remind me

that it's really not -- and never quite will be.

Have you been to a deaf school or visited with deaf people? We have

been going to the School for the Deaf playgroup. It's wonderful! If

there is something like this near you, you might want to arrange a

visit. I suppose you should be getting some kind of deaf

services/therapy anyway. My point is, I found it very comforting to

meet deaf people and realize that it's very ok. It's much easier to

deal with in some ways than all the medical crap we've had to handle so

far. Maybe this is easy for me to say since Aubrie isn't deaf. I hope

I'm not speaking out of turn. I hope everything goes ok with the ear

molds and stuff.

Thinking of you...

Michele

Aubrie's mom

[Guest guest]

Kim,

Great news about Saleah's eating.Keep up th good work!

I'm sorry to hear about her hearing and just wish I could be there to give you

a hug.

Even though you knew deep down that there was a problem it still comes as a

big shock to have it confirmed. Jack is going to Edinburgh on 12th Jan to have

a CT & MRI scan and also brain evoked hearing test. I'm trying not to think

about it too much at the moment. Although I really feel that he is not deaf

I'm still not taking it for granted and I know that if there is a problem I

will be really down for a while. Why can't anything ever be nice and

straightforward with CHARGE?

Elaine mum to Elise(6yrs) & Jack(17mths)CHaRGE

Dumfries,Scotland

[Guest guest]

Kim,

You are a strong person. Don't berate yourself because you showed the

professionals how you feel. I cried buckets of tears after Destiny was born.

I'm not an overly emotional person, but I was breaking down every 2 seconds

for a while. Getting the results of the hearing test is hard. When they did

Destiny's first ABR (brain stem) at 3 weeks old it came back w/ a severe to

profound loss. When the audiologist told me this I was sad, but ok. Then I

asked if Destiny could hear my heartbeat in utero. When she said, very

compassionately, probably not, but could still feel my love, I started

sobbing. For me, knowing she could hear my heartbeat was the link I, felt at

the time, only she and I would share. Because she couldn't hear it I thought

she was missing out on the best part of the prebirth experience. Now I know I

was wrong. Just being connected to me was the most important part.

I don't know if this is where your sadness is coming from, but this is what I

felt when Destiny was diagnosed w/ the hearing loss. Also, we were still in

the denial stage and knowing there was a hearing loss was just another reality

check slapping us in the face.

BTW, Destiny does not have seizures, but I don't think what Saleah is doing is

a seizure. Let me ask you, is she overly tired when she does this side thing.

I think most people who have seizures are tired afterward. Comments anyone?

Thinking of You,

(Destiny CHARgE 6 on Jan 1, Zachary 3 1/2)

Staten Island, NY

[Guest guest]

Kim:

Not to give you false hope, but tested " profound " hearing loss

bilaterally on her first three ABR tests as an infant. Now that she's older

she has tested " mild to moderate " on sound booth hearing tests where I talk

and sing from the booth and she looks toward the speakers. We are having

another ABR on Jan. 27 and this time she will be sedated not just sleeping as

she was before. We're hoping it will help us fine-tune the settings on her

hearing aids and tell us exactly which frequencies and pitches she does need

amplified. I don't know if her hearing improved with age (doesn't seem

possible, but who knows) or if something was wrong with the tests the first

three times, but my child CAN hear. She knows 28 signs and will do them all

on command, spoken in a normal to soft voice.

Hang in there Kim!

Anne mom of 21 months CHArgE

Madison Wisconsin

[Guest guest]

Anne,

From what I remember from Jillian's ABR, the tech said that by kindergarten,

her nerves would develop better and wouldn't have to worry about her sitting

in the front of the class.....so I guess that means hearing can somewhat get

better as a child develops and grows....( just food for thought)

Foley

[Guest guest]

Anne and :

When was born, he also tested profoundly deaf on the ABR with no response

on either ear. When he was about 6 months old, he had a second ABR that

revealed 90 db hearing loss on the right, and 105 db on the left. I was told

at that time that as a child matures neurologically, you may see improved ABR

responses, but that the test is by no means an absolute indicator of hearing.

was subsequently diagnosed with a 50 to 60 db hearing loss and now wears

hearing aids on both ears. His last hearing test in the booth revealled he

has normal hearing with the aids. He has not had an ABR since he was 6 motnhs

old because the audiologist felt that in his case the results did not reflect

his true hearing.

Ana, mom to almost 6 CHARGE, and Jordy, 3

Miami Beach, FL