Sunday, November 02, 2008

Unlike Stevie Wonder, she can see!!

On Thursday I took Katilyn to UC Berkley to the very specialized Low Vision Assessment clinic. Special Visual Assessment Clinic for the Handicapped (SVACH)

She again saw: Deborah Oral-Bixler

As a reminder, Kaitlyn had level 3 ROP in the NICU and had laser surgery to stop her retinas from detaching. (Stevie Wonder is blind due to ROP)

This appointment was long-in-coming.

Below I'll recap of a conversation I had months ago with our insurance company:

But before I get to that I had to write about my experience of being on a college campus, again.

I of course double duty tasked and pumped on the way to UC Berkely. The old "Pump and drive". I'm getting over the fear of other drivers looking over at me, Who cares. I don't have the time to pump any other place, so I often pump and drive.

Upon arrival at the campus - Wow, did I feel old, really old. I was late (what a surprise) it was raining and I couldn't find the correct parking lot (as the lot that for the clinic that I used last time is under construction after the long crazy protesting tree-sitters finally were removed. I parked way too far away and found myself trying to negotiate a stroller on a college campus in the rain feeling really, really lost and out of place and running late.

It was a blast of reality of how much my life has changed since I was a college student at UCSB (UC Santa Barbara). Wow, did I feel old. I had to ask a number of co-eds how to find the building I was supposed to go to. I certainly was the only one pushing a toddler in a stroller. I wondered what students thought as they saw me, a mom pushing a stroller. One girl helped me to carry the stoller down some steps that didn'g have a ramp. I ended up right in the university center square. I didn't feel "old" before going on campus, but here I was pushing a stroller around a college campus feeling ancient. I graduated from college when I was 22, and that was 20 (TWENTY) years ago! Oh My God. 20 years.

Anyways, sorry for that little lament.

Here's the conversation I had with my insurance company/case manager.

Me: "Kaitlyn needs to have another eye exam, as she holds paper about an inch from her face in order to see close-up, she also looks over the top of her glasses."

Our current Opthomologist has said everything fine. But to me, everything isn't fine, why is she looking so close at things. We would like to go back to the UC Berkeley center where she went (and you paid for) over a year ago."

Them: "well, looking at Kaitlyn's history, it looks like her Opthomologist (Dr G) didn't' dilate her eyes in order to do the exam"

Me: "they've been dilated in the past, but I don't really think that's the issue, I would like to get a 2nd opinion"

Them: "the last time she went to UC Berkeley, it was "just" an optician appointment and an opthomologist appt would be better for a 2nd opinion"

Me: "no, we need to go to UC Berkeley, this isn't' a regular optician appt, this appointment is almost 2 hours and includes attaching electrode stickies to her head to see what she is seeing among a lot of other things to check a child's vision"

Them: "no that's out of network, she'll be better off at an opthomologist anyways, as they are more advanced than an optician"

Me" Again, the appt at UC Berkeley is a very specialized Low Vision Assessment, supposedly one of only a few in the country for children, we need to go there."

Well, to make a long story short, they never approved it (even though approved the first visit over a year ago). I gave up on trying to explain why this place was different then what everyone else did. BUT our wonderful local school district has a donor that will pay for children to go to the vision assessment at UC Berkeley, and we just went on Thursday.

They determined:
1. That her left eye has a small amount of peripheral vision loss (common from ROP surgery)

2. That she has limited depth of field (which might account for her stumbling when objects are similar in color, but not for tripping over objects that are very clear).

3. That her vision is about 20/50 at this point, and the reason she looks so closely at items is that her vision is good close up, if she's holding something just a foot in front of her (esp without her glasses) it's very blurry. (-4.5). They didn't see any cause for alarm for it. As she gets older, her vision may still get worse and she may likely need to be at the front of the class or have large print, but at this point, they are happy with what they say (resolved ROP).

After children have ROP surgery, it can still happen that their retinas detach, but the surgery that is being done now is so much better than ROP a number of years ago where they froze the retinas which caused serious long-term scaring. They can see the scars on Kaitlyn's retinas, but they aren't concerned at this point.

All-in-all, well worth the visit and the wait.

Kaitlyn's eyes are really very good for having serious ROP and we are very thankful. At this point she won't qualify for vi son services through our school district (a good thing as far as I'm concerned!)

Did I mention in the past that I found THE PLACE to get eye glasses online? (adults and children)

Wow, what prices!


skeybunny said...


It's not just you. I felt old when I started graduate school at UCB (I was 23!). Most of the students there look really young.


Anonymous said...

I have been following your story for about two years now, and I am so happy to hear that Kaitlyn's vision is not as bad as it could be.
I am a former preemie (32 weeks), although not as early as Kaitlyn, I too had ROP. Unfortunately my visual outcome is not as good as Kaitlyn. I have 20/180 vision in one eye and 20/35 in the other. That is the vision corrected with glasses. So one eye is a -18 and the other is a -9.5. I was always in a regular classroom and never used large print books. I have to say I did sit near the front of the room, until I got to college when everything is on massive screens and I could sit where ever. Myopia has its advantages because you are able to bring things closer to your face to see them, as compared to those who need to have things far away for them to be clear.
Kaitlyn will do fabulous! And do not be discouraged with her vision, she will be able to do it! Medical advances especially with the eyes are proving to be fabulous.

Anonymous said...

Seriously, you don't look old at all. Maybe you photoshop all your pictures of yourself? College is full of KIDS just out of high school after all!