Guess I'm gonna ask for Pixie Dust, too.

[6_Time_Momma]

I had Garrett (my 9 year old with Down Syndrome, congenital heart defect, and congenital paralysis of the right eyelid) to the opthamologist today for an exam and what not. He
has a recurring stye that I got medicine for. The doctor was also
able to tell that he is nearsighted and has astigmatism, so he may
need glasses, BUT the glasses probably won't help hiom much because
the doctor also gave me two new diagnoses to add to Garrett's
neverending list of problems. The first is Optic Nerve Hypoplasia.
Apparently, somewhere around the 7-8th week of pregnancy, the optic
nerve stopped forming. Where a regualar optic nerve contains about
1.2 million fibers, his may be missing anywhere from 10%-90% of these
fibers. So what he does see does not accurately get sent to his brain.

Next, he has nystagmus, which is constant jumping of his eyes. Now,
one might think "Why the heck wouldn't she have noticed that before?"
Occassionally I have seen it, but I guess there is something called
a "null point" which kids find throuh trial and error. This is a
position or posture where the eye stops jumping for them. This is an
incredible revelation to me because Garrett has ALWAYS held his head
tipped back. We alwasy thought it was due to the droopy eyelids and
when they were fixed we wondered why he didn't straighten his head
out. Now I know, it is because that was his "null point" and that is
why I didn't often notice jumping.

Anyway, what this all means is that, even though I don't know how
severe yet, Garrett will always have a visual deficit, even with
glasses.

Days like this really drag me down.

Kristy-

August 1989-Ramada-Honeymoon
August 1992-Swan-International Down Syndrome Conference
February 1997-Wilson World (now Diplomat Resort)-Family vacation
September 2000-Days Suites-Family Vacation
**May 2002--HIFS--Family vacation

 

[itscc2u]

{{{{{ KRISTY}}}}}

I am sending pixie dust your way, some hugs and some prayers.


Christine
DisABLED SAHM Mom to Stefan
Heading to Disney in Nov 2001.
Last time there 1981

 

[teri]

Plenty of Pixie Dust is headed your way. Some weeks it just seems like we are given more than we can bear, and yet we do find ways to keep going, and make it all work out.

Hang in there!

DIS disABILITIES Discussion Board FAQ under construction!
"My brain takes a vacation just to give my heart more room..."
teri@iluvdisney.com

 

[faeflora]

Sending you lots of pixie dust and compassionate thoughts to go with it....

 

[SueM in MN]

I'm sending pixie dust also. My daughter also has optic nerve hypoplasia and also no one can tell us what she does and doesn't see. Her vision is apparently fairly good, but her opthomologist explained she may have some spots of poor or decreased vision (another one of those "hold your head in just the right spot" things). So anyway, I'm sending some understanding pixie dust to you.

SueM in MN
Co-Moderator of disABILITIES

 

[Mskanga]

Tons of PD going your way! Hang in there.

 

[SueOKW]

Doggone it! I don't know what to say, but will hope that somehow while typing something very heartwarming and wise will tumble out.

Actually, I ditto all the posts above. You are in my thoughts, and I hope tomorrow's light will bring new strength to face yet another new world.

{{{hugs}}}
Sue

<img width="200" src="http://www.wdwinfo.com/sites/disstuff/cleveland.gif">

 

[lu]

Darn! Hard things, Kristy. I'm sorry to hear of them. Sometimes it seems like there's just too much bad news to process it all, but give yourself time. You know, I give your son a lot of credit for figuring out how to make his vision work the best for him (in discovering his null point. I hadn't heard that term before) and you guys for not hassling him about it and insisting he change the position of his head.

I hope he and you have got some supportive people at school. If he doesn't already have a vision specialist at school working with him, ask for one. They can do a lot and often know things that the rest of us just don't even think of in terms of what can work. (And I include doctors in that group, even good doctors, because the vision specialists at school work with kids and school work kinds of things all the time.)

Good luck and hang in there!∆