Re: Eye and Endocrinology appt results

[Guest guest]

michelle a shout out to our sarah dr on here lol as for me well ive had many

disagree way to many with different stuff but weve stuck at it and they

belie ve me ive even had people disagree bout wat im doing but i still am

lol ellen kinda bored its only girls at northcot so no normal prorams three

people one does nothing so wat u expect me to to do emails right now an ip

goal is to puncuate better in emails so mark me on this one pls lol

>

> We had an eye exam and growth check with endocrinology today. Aubrie is

> doing well in both areas.

>

> The resident ophthalmologist mentioned the droopiness of her right eye lid

> -

> which is her good eye. This is a guy who has never seen her so I don't

> know

> if this has always been the same and just never been mentioned or if it's

> actually gotten worse. No one's ever said anything before. Basically, the

> lid is drooping enough to get in the way of her vision a bit. She is

> compensating by raising her eyebrows or tilting her head up. She's always

> tilted her head, but I don't know if it's increased lately or not. It

> could

> be one of those things that creeps up over time without our awareness. So

> no big deal - just a new thing to know about, I guess. Surgery is an

> option

> but only if it gets so bad that she can't compensate adequately on her own

> -

> since surgery brings its own set of consequences like a lid that can't

> close

> well for sleep (not a current problem).

>

> The " real " eye dr asked about the support she's getting at school. I

> mentioned the long white cane and he was adamant that it was unnecessary

> because she has such good acuity in her good eye. I didn't continue the

> conversation. I plan to confirm with her O&M and vision specialists that

> they think it's appropriate. When I told Aubrie that the dr didn't think

> it

> was needed, she said, " But it's really not his decision. I think it's

> helpful. " So there.

>

> It's always uncomfortable when a specialist disagrees with us. We had a

> similar experience with the ENT who did her middle ear and BAHA surgeries.

> I adore him. But he doesn't think ISD is an appropriate placement because

> her hearing isn't bad enough. Well, from a medical point of view, based

> solely on her audiogram, maybe it's not an obvious choice. But my guess is

> he's never visited a deaf school and doesn't really understand the

> complexities of educating a child with mulitsensory impairments. I'm

> thinking this comment by the eye dr is similar. Based solely on the acuity

> of her best eye, she wouldn't need a cane. In fact, she might be able to

> drive if that were her only problem. Again, I don't think he understands

> the implications of all her vision issues combined with her hearing,

> balance, etc.

>

> Another eye thing that's got me wondering - how do they really check

> distance vision??? The eye chart is only so far away. Aubrie can see to a

> certain distance. But she loses it after that. When we are at an event, we

> need to be right up front or she can't get what's going on. She can't

> usually see well out of the car window. Maybe it's a problem with focus or

> something. It may have nothing to do with acuity, but she's definitely got

> issues with distance. And, of course, there are issues with depth

> perception since she's only got one eye doing a good job.

>

> Ok - so - enough of the eye ponderings.

>

> Moving on to growth - she's following the curve between 5-10%ile. Very

> awesome considering it took her years to get on the curve! She's outgrown

> clothes like crazy this year, is starting to have a bit of a belly, and

> even

> has some muscles in her thighs! The dr said she very well could be growth

> hormone deficient but is doing well enough because she has tall parents.

> Even though she is always the smallest one in her age group, Aubrie

> doesn't

> mind her size at all. In fact, it's a good thing right now since it sort

> of

> fits with her motor skill maturity. So the dr doesn't think it's time to

> consider GHT. But I know there are benefits to GHT besides the actual

> growth. There are also disadvantages and side-effects. I'm fine with not

> pursuing it now. But I'm interested in any opinions from those of you with

> experience just to be sure we're doing the right thing by not doing

> anything. I also plan to run it by Kirk at the conference. Any

> thoughts?

>

> Thanks!

>

> Michele W

> Aubrie's mom 9 yrs

>

>

[Guest guest]

Michele, this is another one of those nights when I probably shouldn't be

writing (haven't recovered from rushing Andy to the e.r. on Sunday [he's

fine - apparently wasn't drinking enough water in the heat] and today, at

rehab, one of my co-captives collapsed --- and I have been a wreck).

Enough about me.

I am 5'9 1/2 " tall, and decidedly takes after my side of the family.

Several years ago, I said to Sandy Davenport that couldn't have

CHARGE because she'd gotten so tall; Dr. D. had to remind me about my

family's height. Genes matter in so many ways!

Anyway, it's hard to believe it now when I look at , but she was

small for many years. We didn't use ght probably because no one

mentioned it way back when. I don't know when she took off growing, but

she must be at least 5'6 " now (Pam might have a better idea; I'm too

close). In her case, ignorant parents were a good thing. Mind you,

hormonal therapy for development was another issue.

I know you've had experience with St. Louis Childrens. That's where all

of 's early opth. work was done. The purely objective work-ups

showed her sight was just awful. A neuro-ophth finally did a test when she

was still tiny; as another dr. said after the test, " I see what Mitch means

when he says he sees the macula " . In other words, was doing

things others didn't think possible.

Also at Childrens, we had NO help at all with educational issues with

regard to deafness. Someone should have mentioned sign languag to

us from the beginning, but that waited many years. It was as though even

the audiologists did not recognize the overpowering need for a trusty

communication mode. The specialists definitely aren't always thinking in

real life terms.

Enough of my soap box. Hugs --- Martha

---------------------- Original Message: ---------------------

To: CHARGE >

Subject: Eye and Endocrinology appt results

Date: Thu, 28 Jun 2007 03:13:47 +0000

> We had an eye exam and growth check with endocrinology today. Aubrie is

> doing well in both areas.

>

>

>

> The resident ophthalmologist mentioned the droopiness of her right eye lid

-

> which is her good eye. This is a guy who has never seen her so I don't

know

> if this has always been the same and just never been mentioned or if it's

> actually gotten worse. No one's ever said anything before. Basically, the

> lid is drooping enough to get in the way of her vision a bit. She is

> compensating by raising her eyebrows or tilting her head up. She's always

> tilted her head, but I don't know if it's increased lately or not. It

could

> be one of those things that creeps up over time without our awareness. So

> no big deal - just a new thing to know about, I guess. Surgery is an

option

> but only if it gets so bad that she can't compensate adequately on her own

-

> since surgery brings its own set of consequences like a lid that can't

close

> well for sleep (not a current problem).

>

>

>

> The " real " eye dr asked about the support she's getting at

school. I

> mentioned the long white cane and he was adamant that it was unnecessary

> because she has such good acuity in her good eye. I didn't continue the

> conversation. I plan to confirm with her O & M and vision specialists

that

> they think it's appropriate. When I told Aubrie that the dr didn't think

it

> was needed, she said, " But it's really not his decision. I think it's

> helpful. " So there.

>

> It's always uncomfortable when a specialist disagrees with us. We had a

> similar experience with the ENT who did her middle ear and BAHA surgeries.

> I adore him. But he doesn't think ISD is an appropriate placement because

> her hearing isn't bad enough. Well, from a medical point of view, based

> solely on her audiogram, maybe it's not an obvious choice. But my guess is

> he's never visited a deaf school and doesn't really understand the

> complexities of educating a child with mulitsensory impairments. I'm

> thinking this comment by the eye dr is similar. Based solely on the acuity

> of her best eye, she wouldn't need a cane. In fact, she might be able to

> drive if that were her only problem. Again, I don't think he understands

> the implications of all her vision issues combined with her hearing,

> balance, etc.

>

>

>

> Another eye thing that's got me wondering - how do they really check

> distance vision??? The eye chart is only so far away. Aubrie can see to a

> certain distance. But she loses it after that. When we are at an event,

we

> need to be right up front or she can't get what's going on. She can't

> usually see well out of the car window. Maybe it's a problem with focus or

> something. It may have nothing to do with acuity, but she's definitely got

> issues with distance. And, of course, there are issues with depth

> perception since she's only got one eye doing a good job.

>

>

>

> Ok - so - enough of the eye ponderings.

>

>

>

> Moving on to growth - she's following the curve between 5-10%ile. Very

> awesome considering it took her years to get on the curve! She's outgrown

> clothes like crazy this year, is starting to have a bit of a belly, and

even

> has some muscles in her thighs! The dr said she very well could be growth

> hormone deficient but is doing well enough because she has tall parents.

> Even though she is always the smallest one in her age group, Aubrie doesn't

> mind her size at all. In fact, it's a good thing right now since it sort

of

> fits with her motor skill maturity. So the dr doesn't think it's time to

> consider GHT. But I know there are benefits to GHT besides the actual

> growth. There are also disadvantages and side-effects. I'm fine with not

> pursuing it now. But I'm interested in any opinions from those of you with

> experience just to be sure we're doing the right thing by not doing

> anything. I also plan to run it by Kirk at the conference. Any

> thoughts?

>

>

>

> Thanks!

>

> Michele W

> Aubrie's mom 9 yrs

>

>

>

>

>

>

>

>

[Guest guest]

Michele,

In regard to wondering if the drooping eyelid was something new or not, I'm

wondering if you might get an answer by looking back over old photos. What

might not have seemed apparent day to day might have actually shown up in a

photo. It may have always been that way. Or, it's possible you would notice

that all of a sudden, when she was --- years old, you could see a droopiness in

the eyelid.

It's just a thought.

Also, I wanted to say how wonderful the ad with Aubrie was. WOW! What a sweet,

sweet, little darling.

Mom to Kendra

Eye and Endocrinology appt results

We had an eye exam and growth check with endocrinology today. Aubrie is

doing well in both areas.

The resident ophthalmologist mentioned the droopiness of her right eye lid -

which is her good eye. This is a guy who has never seen her so I don't know

if this has always been the same and just never been mentioned or if it's

actually gotten worse. No one's ever said anything before. Basically, the

lid is drooping enough to get in the way of her vision a bit. She is

compensating by raising her eyebrows or tilting her head up. She's always

tilted her head, but I don't know if it's increased lately or not. It could

be one of those things that creeps up over time without our awareness. So

no big deal - just a new thing to know about, I guess. Surgery is an option

but only if it gets so bad that she can't compensate adequately on her own -

since surgery brings its own set of consequences like a lid that can't close

well for sleep (not a current problem).

The " real " eye dr asked about the support she's getting at school. I

mentioned the long white cane and he was adamant that it was unnecessary

because she has such good acuity in her good eye. I didn't continue the

conversation. I plan to confirm with her O&M and vision specialists that

they think it's appropriate. When I told Aubrie that the dr didn't think it

was needed, she said, " But it's really not his decision. I think it's

helpful. " So there.

It's always uncomfortable when a specialist disagrees with us. We had a

similar experience with the ENT who did her middle ear and BAHA surgeries.

I adore him. But he doesn't think ISD is an appropriate placement because

her hearing isn't bad enough. Well, from a medical point of view, based

solely on her audiogram, maybe it's not an obvious choice. But my guess is

he's never visited a deaf school and doesn't really understand the

complexities of educating a child with mulitsensory impairments. I'm

thinking this comment by the eye dr is similar. Based solely on the acuity

of her best eye, she wouldn't need a cane. In fact, she might be able to

drive if that were her only problem. Again, I don't think he understands

the implications of all her vision issues combined with her hearing,

balance, etc.

Another eye thing that's got me wondering - how do they really check

distance vision??? The eye chart is only so far away. Aubrie can see to a

certain distance. But she loses it after that. When we are at an event, we

need to be right up front or she can't get what's going on. She can't

usually see well out of the car window. Maybe it's a problem with focus or

something. It may have nothing to do with acuity, but she's definitely got

issues with distance. And, of course, there are issues with depth

perception since she's only got one eye doing a good job.

Ok - so - enough of the eye ponderings.

Moving on to growth - she's following the curve between 5-10%ile. Very

awesome considering it took her years to get on the curve! She's outgrown

clothes like crazy this year, is starting to have a bit of a belly, and even

has some muscles in her thighs! The dr said she very well could be growth

hormone deficient but is doing well enough because she has tall parents.

Even though she is always the smallest one in her age group, Aubrie doesn't

mind her size at all. In fact, it's a good thing right now since it sort of

fits with her motor skill maturity. So the dr doesn't think it's time to

consider GHT. But I know there are benefits to GHT besides the actual

growth. There are also disadvantages and side-effects. I'm fine with not

pursuing it now. But I'm interested in any opinions from those of you with

experience just to be sure we're doing the right thing by not doing

anything. I also plan to run it by Kirk at the conference. Any

thoughts?

Thanks!

Michele W

Aubrie's mom 9 yrs

[Guest guest]

Michele,

Just some random comments here.

On the cane. He's missing the hearing, balance, strength complications,

certainly.

Besides that, as we've said before, the cane is as much to cue those around

the

kids, as for the kids themselves.

Same with the deaf school. But, these experiences you've had point again to

the fact that doctors become so specialized that they see the tree and still

miss the forest. The advice you received is very inappropriate in terms of

multisensory/physical complications, to the point that I wish they'd learn to

stay quiet on subjects they do not understand. Imagine if you followed their

advice.

I like Aubrie's answer. (so there!, as she says)

On growth hormone-we did not go that route. was full-term 7.0 lbs.

dropped below 5 lbs at one point in hospital. she grew slowly, but was 5'1 "

at 16, and 5'2 " by 19 years. GH can accelerate the scoliosis, I believe.

is on HRT, and we were told that would halt the growing process,

if there was to be any more, but we still got that one more inch.

Re distance vision. Di really loses it at 3 ft. but says she can see

airplanes

in the sky. As far as I know, that info is all experiential.

Seeing things from a moving car has come on a bit as she's aged.

That's our little blurb of experience.

linda in Ma.

************************************** See what's free at http://www.aol.com.

[Guest guest]

Michele, it is uncomfortable when you disagree (been there, done that oh

yeah) but I usually just say something like, " thank you for your input " -

every decision is ultimately the family's in my opinion...good for you for

considering Aubrie as a WHOLE child, not just this part or that part. We

got into that with our GI surgery early on - they wanted to do what was best

just looking at her gut and not the rest of her, I wanted to do what was

best for the WHOLE person.

Lis

>

> We had an eye exam and growth check with endocrinology today. Aubrie is

> doing well in both areas.

>

> The resident ophthalmologist mentioned the droopiness of her right eye lid

> -

> which is her good eye. This is a guy who has never seen her so I don't

> know

> if this has always been the same and just never been mentioned or if it's

> actually gotten worse. No one's ever said anything before. Basically, the

> lid is drooping enough to get in the way of her vision a bit. She is

> compensating by raising her eyebrows or tilting her head up. She's always

> tilted her head, but I don't know if it's increased lately or not. It

> could

> be one of those things that creeps up over time without our awareness. So

> no big deal - just a new thing to know about, I guess. Surgery is an

> option

> but only if it gets so bad that she can't compensate adequately on her own

> -

> since surgery brings its own set of consequences like a lid that can't

> close

> well for sleep (not a current problem).

>

> The " real " eye dr asked about the support she's getting at school. I

> mentioned the long white cane and he was adamant that it was unnecessary

> because she has such good acuity in her good eye. I didn't continue the

> conversation. I plan to confirm with her O&M and vision specialists that

> they think it's appropriate. When I told Aubrie that the dr didn't think

> it

> was needed, she said, " But it's really not his decision. I think it's

> helpful. " So there.

>

> It's always uncomfortable when a specialist disagrees with us. We had a

> similar experience with the ENT who did her middle ear and BAHA surgeries.

> I adore him. But he doesn't think ISD is an appropriate placement because

> her hearing isn't bad enough. Well, from a medical point of view, based

> solely on her audiogram, maybe it's not an obvious choice. But my guess is

> he's never visited a deaf school and doesn't really understand the

> complexities of educating a child with mulitsensory impairments. I'm

> thinking this comment by the eye dr is similar. Based solely on the acuity

> of her best eye, she wouldn't need a cane. In fact, she might be able to

> drive if that were her only problem. Again, I don't think he understands

> the implications of all her vision issues combined with her hearing,

> balance, etc.

>

> Another eye thing that's got me wondering - how do they really check

> distance vision??? The eye chart is only so far away. Aubrie can see to a

> certain distance. But she loses it after that. When we are at an event, we

> need to be right up front or she can't get what's going on. She can't

> usually see well out of the car window. Maybe it's a problem with focus or

> something. It may have nothing to do with acuity, but she's definitely got

> issues with distance. And, of course, there are issues with depth

> perception since she's only got one eye doing a good job.

>

> Ok - so - enough of the eye ponderings.

>

> Moving on to growth - she's following the curve between 5-10%ile. Very

> awesome considering it took her years to get on the curve! She's outgrown

> clothes like crazy this year, is starting to have a bit of a belly, and

> even

> has some muscles in her thighs! The dr said she very well could be growth

> hormone deficient but is doing well enough because she has tall parents.

> Even though she is always the smallest one in her age group, Aubrie

> doesn't

> mind her size at all. In fact, it's a good thing right now since it sort

> of

> fits with her motor skill maturity. So the dr doesn't think it's time to

> consider GHT. But I know there are benefits to GHT besides the actual

> growth. There are also disadvantages and side-effects. I'm fine with not

> pursuing it now. But I'm interested in any opinions from those of you with

> experience just to be sure we're doing the right thing by not doing

> anything. I also plan to run it by Kirk at the conference. Any

> thoughts?

>

> Thanks!

>

> Michele W

> Aubrie's mom 9 yrs

>

>

[Guest guest]

,

Amita is on the other side of the issues you mentioned but with the

exact same problems i.e vision, hearing etc. She does not use a cane

and she is fully mainstreamed. She is very small not even on the

growth curve but then we are petite too.

As to the cane, if Aubrie wants it and she is saying that it is

helpful you should absolutely go with what she says. In fact for

Amita, I am going to have the O and M come back for a session and

teach her how to use it (At the next ARD). I want Amita to have the

choice and make her own decision.

Hey as an aside; when Amita was younger and could not communicate

clearly we used sign language. Her ECI teacher said that she would

drop it if and when she could communicate effectively through

speaking orally and Amita did gradually stop signing. The point is

that both Amita and Aubrie should have the choice so they can then

make an informed decision.

As to mainstreaming, Amita was mainstreamed completely last year.

She has all the adaptations etc for her to learn effectively in her

new school. I have to say, this move would not have been successful

if not for support from everyone in the new school. Her class

teacher was AWESOME!! Everyone welcomed her and tried to help me in

every way they could. The workload is more, there are 17 children in

her class.It is very hard because it takes more concentration more

work just to keep up so she is somewhere in the middle of her class

in terms of learning. There are frustrations like when the video

streaming does not have captioning or she does not hear stuff and

misses out. But we try to make it up at home and try to find a

solution in the ARD like for e.g I asked for permission to access

videostreaming content from home for the next year. If it gets too

hard and she starts to struggle too much then we will reassess her

placement.But so far she is keeping up.

Amita's endo wants to wait also kind of for the same reasons your

doc also gave. She is the head of endo here and is supposed to be

very good.

Super long email, hope it helped

Deepta

>

> We had an eye exam and growth check with endocrinology today.

Aubrie is

> doing well in both areas.

>

>

>

> The resident ophthalmologist mentioned the droopiness of her right

eye lid -

> which is her good eye. This is a guy who has never seen her so I

don't know

> if this has always been the same and just never been mentioned or

if it's

> actually gotten worse. No one's ever said anything before.

Basically, the

> lid is drooping enough to get in the way of her vision a bit. She

is

> compensating by raising her eyebrows or tilting her head up.

She's always

> tilted her head, but I don't know if it's increased lately or

not. It could

> be one of those things that creeps up over time without our

awareness. So

> no big deal - just a new thing to know about, I guess. Surgery is

an option

> but only if it gets so bad that she can't compensate adequately on

her own -

> since surgery brings its own set of consequences like a lid that

can't close

> well for sleep (not a current problem).

>

>

>

> The " real " eye dr asked about the support she's getting at

school. I

> mentioned the long white cane and he was adamant that it was

unnecessary

> because she has such good acuity in her good eye. I didn't

continue the

> conversation. I plan to confirm with her O&M and vision

specialists that

> they think it's appropriate. When I told Aubrie that the dr

didn't think it

> was needed, she said, " But it's really not his decision. I think

it's

> helpful. " So there.

>

> It's always uncomfortable when a specialist disagrees with us. We

had a

> similar experience with the ENT who did her middle ear and BAHA

surgeries.

> I adore him. But he doesn't think ISD is an appropriate placement

because

> her hearing isn't bad enough. Well, from a medical point of view,

based

> solely on her audiogram, maybe it's not an obvious choice. But my

guess is

> he's never visited a deaf school and doesn't really understand the

> complexities of educating a child with mulitsensory impairments.

I'm

> thinking this comment by the eye dr is similar. Based solely on

the acuity

> of her best eye, she wouldn't need a cane. In fact, she might be

able to

> drive if that were her only problem. Again, I don't think he

understands

> the implications of all her vision issues combined with her

hearing,

> balance, etc.

>

>

>

> Another eye thing that's got me wondering - how do they really

check

> distance vision??? The eye chart is only so far away. Aubrie can

see to a

> certain distance. But she loses it after that. When we are at an

event, we

> need to be right up front or she can't get what's going on. She

can't

> usually see well out of the car window. Maybe it's a problem with

focus or

> something. It may have nothing to do with acuity, but she's

definitely got

> issues with distance. And, of course, there are issues with depth

> perception since she's only got one eye doing a good job.

>

>

>

> Ok - so - enough of the eye ponderings.

>

>

>

> Moving on to growth - she's following the curve between 5-10%ile.

Very

> awesome considering it took her years to get on the curve! She's

outgrown

> clothes like crazy this year, is starting to have a bit of a

belly, and even

> has some muscles in her thighs! The dr said she very well could

be growth

> hormone deficient but is doing well enough because she has tall

parents.

> Even though she is always the smallest one in her age group,

Aubrie doesn't

> mind her size at all. In fact, it's a good thing right now since

it sort of

> fits with her motor skill maturity. So the dr doesn't think it's

time to

> consider GHT. But I know there are benefits to GHT besides the

actual

> growth. There are also disadvantages and side-effects. I'm fine

with not

> pursuing it now. But I'm interested in any opinions from those of

you with

> experience just to be sure we're doing the right thing by not doing

> anything. I also plan to run it by Kirk at the

conference. Any

> thoughts?

>

>

>

> Thanks!

>

> Michele W

> Aubrie's mom 9 yrs

>

>

>

>

>

>

>

>

[Guest guest]

Michele,

Obviously your instincts are correct. Neither of these professionals are looking

at the whole picture. Try not to second guess yourself.

About the eyelid thing. MacKenzie has severe issues with her right eyelid, only

the opposite of Aubrie, hers doesn't close well. We see an Occular Plastic

surgeon, who keeps very detailed measurements and photos. I don't think this is

a decision for an Ophthalmologist.

Mac has had several procedures done and will need several more to preserve the

sight in that eye.

Jeanie

Oh yeah, I've been divorced for almost 7 years now and it's been a saga worthy

of a Dr.Phil show.

[Guest guest]

Ellen-

I used to be a teacher so asking me to mark you is a dangerous request! I

am wicked with a red pencil!

Michele W

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

ellen howe

Sent: Wednesday, June 27, 2007 10:59 PM

To: CHARGE

Subject: Re: Eye and Endocrinology appt results

michelle a shout out to our sarah dr on here lol as for me well ive had many

disagree way to many with different stuff but weve stuck at it and they

belie ve me ive even had people disagree bout wat im doing but i still am

lol ellen kinda bored its only girls at northcot so no normal prorams three

people one does nothing so wat u expect me to to do emails right now an ip

goal is to puncuate better in emails so mark me on this one pls lol

[Guest guest]

Martha-

First of all, I hope today brings better things your way!

Thanks for confirming the thoughts about medical specialists not always

understanding the real life implications of things. I've had the pleasure

of meeting so I know how tall she is! I hadn't thought about Aubrie

having a spurt and truly getting tall. Her paternal grandmother is petite

so we just focus on the possibility that she'll be petite like Mimi and able

to wear the wedding dress she's saved for the granddaughters.

Take care and relax a bit!

Michele W

[Guest guest]

-

Thanks for the suggestion. I had thought about that as well. When I just

go back through my memory, she always tilted way back for photos. It was

one of those situations where she tilted when given the " smile " command. I

think because her " picture smile " was actually a goofy expression that

pulled her eyebrows down. When told to relax and give a " happy smile " , she

would put her head more level. Interesting.

Michele W

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

Keedy

Sent: Thursday, June 28, 2007 12:23 AM

To: CHARGE

Subject: Re: Eye and Endocrinology appt results

Michele,

In regard to wondering if the drooping eyelid was something new or not, I'm

wondering if you might get an answer by looking back over old photos. What

might not have seemed apparent day to day might have actually shown up in a

photo. It may have always been that way. Or, it's possible you would notice

that all of a sudden, when she was --- years old, you could see a droopiness

in the eyelid.

It's just a thought.

Also, I wanted to say how wonderful the ad with Aubrie was. WOW! What a

sweet, sweet, little darling.

Mom to Kendra

[Guest guest]

-

At least your experience with Di mimics mine with Aubrie so I feel

validated. I wasn't letting the dr comments get under my skin as I'm fairly

confident in our current choices. But it is worrisome for other parents who

would listen and get no further input. Argh.

Michele W

[Guest guest]

-

This is a difficult lesson to learn as a parent - that it's ok, even

necessary, to question dr opinions. Maybe another good column topic since

it's so critical for our kids' success!

Michele

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

Weir

Sent: Thursday, June 28, 2007 7:05 AM

To: CHARGE

Subject: Re: Eye and Endocrinology appt results

Michele, it is uncomfortable when you disagree (been there, done that oh

yeah) but I usually just say something like, " thank you for your input " -

every decision is ultimately the family's in my opinion...good for you for

considering Aubrie as a WHOLE child, not just this part or that part. We

got into that with our GI surgery early on - they wanted to do what was best

just looking at her gut and not the rest of her, I wanted to do what was

best for the WHOLE person.

Lis

[Guest guest]

Deepta-

Thanks for all your experiences. I'm especially interested in Amita's

school experience. It's wonderful that you've found a team to support her

in the regular classroom - and she's being so successful!!!!!!! Aubrie will

be in the regular class for the afternoon's next year. Her team is

fabulous, but I still worry about it. It's not that I think they don't want

to do well, I just wonder if we've got all the knowledge, skills, and tools

we need to do well for Aubrie. That's why we're doing half and half

placement (ISD and regular school). It will give us a chance to see how she

does in each setting. When and if one becomes apparently the " best " , we can

switch to full-time there.

We did sign in infancy also for the same reasons - to provide a way to

communicate before she had speech and to give a choice. Same reason she's

at ISD this year - she gets all the info in many formats so she can " get it "

one way or another. She is thriving there academically. She seems to learn

so well in a smaller classroom and with multimodal teaching. However, I

think their curriculum is slightly different so I worry about what she is

missing. By going half and half, she'll be exposed to more. We'll see how

it goes.

The real point of all of that was to commend you on Amita's success in

school. I remember from your posts through out the year how much time you

have invested in working with her at home.

Michele W

[Guest guest]

Jeanie-

Thanks for the confirmation!

I hope the saga has settled down to allow you a contented life on your own.

Michele

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

Jeanie

Sent: Thursday, June 28, 2007 9:21 AM

To: CHARGE

Subject: Re: Eye and Endocrinology appt results

Michele,

Obviously your instincts are correct. Neither of these professionals are

looking at the whole picture. Try not to second guess yourself.

About the eyelid thing. MacKenzie has severe issues with her right eyelid,

only the opposite of Aubrie, hers doesn't close well. We see an Occular

Plastic surgeon, who keeps very detailed measurements and photos. I don't

think this is a decision for an Ophthalmologist.

Mac has had several procedures done and will need several more to preserve

the sight in that eye.

Jeanie

Oh yeah, I've been divorced for almost 7 years now and it's been a saga

worthy of a Dr.Phil show.

[Guest guest]

Jeanie,

" a " Dr. Phil show?

L

>

> Michele,

>

> Obviously your instincts are correct. Neither of these professionals are

> looking at the whole picture. Try not to second guess yourself.

>

> About the eyelid thing. MacKenzie has severe issues with her right eyelid,

> only the opposite of Aubrie, hers doesn't close well. We see an Occular

> Plastic surgeon, who keeps very detailed measurements and photos. I don't

> think this is a decision for an Ophthalmologist.

> Mac has had several procedures done and will need several more to preserve

> the sight in that eye.

>

> Jeanie

>

> Oh yeah, I've been divorced for almost 7 years now and it's been a saga

> worthy of a Dr.Phil show.

>

>

[Guest guest]

Excellent column idea - we've grown up with the notion that doctors are

" gods " and unfortunately I think sometimes parents go against their own

instincts because they feel they aren't " allowed " to question doctors.

L

>

> -

>

> This is a difficult lesson to learn as a parent - that it's ok, even

> necessary, to question dr opinions. Maybe another good column topic since

> it's so critical for our kids' success!

>

> Michele

>

> _____

>

> From: CHARGE [mailto:

> CHARGE ] On Behalf Of

> Weir

> Sent: Thursday, June 28, 2007 7:05 AM

> To: CHARGE

> Subject: Re: Eye and Endocrinology appt results

>

> Michele, it is uncomfortable when you disagree (been there, done that oh

> yeah) but I usually just say something like, " thank you for your input " -

> every decision is ultimately the family's in my opinion...good for you for

> considering Aubrie as a WHOLE child, not just this part or that part. We

> got into that with our GI surgery early on - they wanted to do what was

> best

> just looking at her gut and not the rest of her, I wanted to do what was

> best for the WHOLE person.

>

> Lis

>

>

[Guest guest]

I know what you mean. I have the exact same worry for Amita. If she

has a " lesser " curriculum, I worry about what she is missing out on

and how it may impact her later on. As it is we have some kind of

student level based teaching going on. For e.g. kids are divided

into groups based on their reading and math skills (which is tested

3 times/yr). The knowledge they are exposed to is based on their

skill level. This helps the teacher to tailor her teaching to the

students in each group. I worry about further limiting her knowledge

if I impose further restrictions.

FYI I swing back and forth in my opinion on this topic and drive my

husband crazy. I guess there is no right answer. What works for our

kids is what should be implemented by us!! However that doesn't stop

me from worrying when I see that 2nd graders are supposed to do like

75!!! addition problems in 1 min and God know how many subtractions

by the time they enter 3rd grade!!!!And don't get me started on the

word problems!!!I find them hard and I have a Ph.D.))

Deepta

>

> Deepta-

>

> Thanks for all your experiences. I'm especially interested in

Amita's

> school experience. It's wonderful that you've found a team to

support her

> in the regular classroom - and she's being so successful!!!!!!!

Aubrie will

> be in the regular class for the afternoon's next year. Her team is

> fabulous, but I still worry about it. It's not that I think they

don't want

> to do well, I just wonder if we've got all the knowledge, skills,

and tools

> we need to do well for Aubrie. That's why we're doing half and

half

> placement (ISD and regular school). It will give us a chance to

see how she

> does in each setting. When and if one becomes apparently

the " best " , we can

> switch to full-time there.

>

>

>

> We did sign in infancy also for the same reasons - to provide a

way to

> communicate before she had speech and to give a choice. Same

reason she's

> at ISD this year - she gets all the info in many formats so she

can " get it "

> one way or another. She is thriving there academically. She

seems to learn

> so well in a smaller classroom and with multimodal teaching.

However, I

> think their curriculum is slightly different so I worry about what

she is

> missing. By going half and half, she'll be exposed to more.

We'll see how

> it goes.

>

>

>

> The real point of all of that was to commend you on Amita's

success in

> school. I remember from your posts through out the year how much

time you

> have invested in working with her at home.

>

>

>

> Michele W

>

>

>

>

[Guest guest]

,

Maybe Jerry Springer would be more appropriate.

Jeanie

[Guest guest]

Michele,

I am so glad I caught this post. Aubrie's comment about it not really

being the doctor's decision if she uses a cane or not is AWESOME! She

is such a wise one. And you are wise too. Using the cane, her

troubles with distance vision etc. are not reated to her acuity.

There are so many more visual functions involved! From his

perspective he is right, she doesn't need it. But from yours and

Aubrie when you see the full impact of all of her sensory impairments,

you know she does! Do not doubt yourself!

Kim

>

>

>

>

>

>

> We had an eye exam and growth check with endocrinology today. Aubrie is

> doing well in both areas.

>

> The resident ophthalmologist mentioned the droopiness of her right eye lid

> -

> which is her good eye. This is a guy who has never seen her so I don't know

> if this has always been the same and just never been mentioned or if it's

> actually gotten worse. No one's ever said anything before. Basically, the

> lid is drooping enough to get in the way of her vision a bit. She is

> compensating by raising her eyebrows or tilting her head up. She's always

> tilted her head, but I don't know if it's increased lately or not. It could

> be one of those things that creeps up over time without our awareness. So

> no big deal - just a new thing to know about, I guess. Surgery is an option

> but only if it gets so bad that she can't compensate adequately on her own

> -

> since surgery brings its own set of consequences like a lid that can't

> close

> well for sleep (not a current problem).

>

> The " real " eye dr asked about the support she's getting at school. I

> mentioned the long white cane and he was adamant that it was unnecessary

> because she has such good acuity in her good eye. I didn't continue the

> conversation. I plan to confirm with her O&M and vision specialists that

> they think it's appropriate. When I told Aubrie that the dr didn't think it

> was needed, she said, " But it's really not his decision. I think it's

> helpful. " So there.

>

> It's always uncomfortable when a specialist disagrees with us. We had a

> similar experience with the ENT who did her middle ear and BAHA surgeries.

> I adore him. But he doesn't think ISD is an appropriate placement because

> her hearing isn't bad enough. Well, from a medical point of view, based

> solely on her audiogram, maybe it's not an obvious choice. But my guess is

> he's never visited a deaf school and doesn't really understand the

> complexities of educating a child with mulitsensory impairments. I'm

> thinking this comment by the eye dr is similar. Based solely on the acuity

> of her best eye, she wouldn't need a cane. In fact, she might be able to

> drive if that were her only problem. Again, I don't think he understands

> the implications of all her vision issues combined with her hearing,

> balance, etc.

>

> Another eye thing that's got me wondering - how do they really check

> distance vision??? The eye chart is only so far away. Aubrie can see to a

> certain distance. But she loses it after that. When we are at an event, we

> need to be right up front or she can't get what's going on. She can't

> usually see well out of the car window. Maybe it's a problem with focus or

> something. It may have nothing to do with acuity, but she's definitely got

> issues with distance. And, of course, there are issues with depth

> perception since she's only got one eye doing a good job.

>

> Ok - so - enough of the eye ponderings.

>

> Moving on to growth - she's following the curve between 5-10%ile. Very

> awesome considering it took her years to get on the curve! She's outgrown

> clothes like crazy this year, is starting to have a bit of a belly, and

> even

> has some muscles in her thighs! The dr said she very well could be growth

> hormone deficient but is doing well enough because she has tall parents.

> Even though she is always the smallest one in her age group, Aubrie doesn't

> mind her size at all. In fact, it's a good thing right now since it sort of

> fits with her motor skill maturity. So the dr doesn't think it's time to

> consider GHT. But I know there are benefits to GHT besides the actual

> growth. There are also disadvantages and side-effects. I'm fine with not

> pursuing it now. But I'm interested in any opinions from those of you with

> experience just to be sure we're doing the right thing by not doing

> anything. I also plan to run it by Kirk at the conference. Any

> thoughts?

>

> Thanks!

>

> Michele W

> Aubrie's mom 9 yrs

>

>

[Guest guest]

Kim-

I've been meaning to say how very glad I am that you are back online with

us! You've been so missed!!

Michele W