Eye and Endocrinology appt results

[Guest guest]

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