GIANT Vision Update.

On August 12th, Luke, Grammers and I went up to Stanford and met with Dr. Deborah Alcorn, the pediatric ophthalmologist who we were referred to for a second opinion by Dr. Stathocopolous (our local pediatric ophthalmologist.) She is a very nice woman who Luke warmed to immediately and overall we had a very productive visit. After speaking with myself and observing Luke, she didn’t have much to add to Dr. S.’s previous findings but it was extremely comforting to have another highly respected doctor weight in on Luke’s unusual vision issues.

As I have mentioned (and pictures sometime show) Luke’s eye muscle control is all over the place but it slowly seems to be getting more stable as he matures. Surgery cannot be performed until progression stops and they can get good measurements to actually shorten the eye muscles. Dr. Alcorn said this could be not until he’s 4 years old (or older) if at all. It is purely a matter of Luke being on his very own schedule (as he has been since Day 1!)

Luke definitely prefers his left eye but we’re going to continue patching it daily to try to strengthen the right. 2-3 hours a day has blissfully been shortened to 1 – 1 ½ hours which is a lot more realistic with a toddler. Luke will either completely ignore the patch and be fine OR within minutes of having it put on, rip it off, look guilty and try to re-stick the crumpled band-aid-type patch before I notice (very cute but frustrating.) Needless to say, it’s not the most fun time of the day.

The absolute best thing that came out of the visit with Dr. Alcorn was the successful dilatation of Luke’s eyes. Back when Dr. S. did it in June, Luke screamed and refused to let her have a peek inside his eyeballs (he shot his eyes downward.) Because of this, Dr. S. was unable to get any type of reading whether or not Luke had a vision correction that would require glasses.

As I mentioned, Luke seemed quite enamored with Dr. Alcorn (and the feeling was adorably mutual- she couldn’t stop gushing over our handsome little guy) and therefore was more open to her handling him. But what I believe made the biggest difference is that I kept out of the room and had Grammers (my mom) take him in. Without “mama” around, Luke did much better.

Turns out Luke is farsighted (can’t see well close-up) and glasses are currently on order. With a rather hefty prescription, we’re hoping by being able to see better, Luke’s gross motor skills will improve. He’s currently on the verge of commando crawling (using his left hand/arm, he moves himself in counter clockwise circles while on his belly and rolls around everywhere) but it has to be scary for him to venture forward if he literally can’t see what is in front of him. At the least, it should help with his frequently crossed eyes.

So to answer our two most frequently asked questions regarding Luke’s new acquired eyeglass prescription:

Q: “How do they know what his prescription is without him being able to talk or read?”
A: The doctor has an apparatus that will look into the dilated eyeballs and give the correct reading. I’m guessing it’s pretty common since there seem to be a lot of little ones with glasses and being that I had trouble getting my own prescription figured out as an adult, I doubt they would rely strictly on any young child’s feedback (even if they can talk and read.)

Q: “How do they keep the glasses on his head?”
A: The glasses are made of a silicon material and have no hinges or screws. There’s a soft strap that holds it secure on his head and it doesn’t seem to interfere with Luke’s shunt tubing that runs behind his ear (I’m still paranoid about that so I’m going to have to get 100% confirmation from his neurosurgeon.) I call them Luke’s “Mr. Potato Head Glasses” but in blue instead of green.

We tried the sample frames (ordered especially for Luke) on last week and are currently just waiting (and trying to be patient!) for them to arrive. The following pictures are exactly what the glasses will look like just with lenses and minus the white “Sample” sticker on the left frame.

Just when we thought he couldn't get any cuter...

A strong profile with a soft strap.

If anyone has any questions regarding Luke's health/development/deep love of the TV remote, please feel free to ask me. We are so proud and I love nothing more then to discuss every little nuance of our amazing little man!