Tuesday, March 22, 2011

IA City Update

Valentine's Day

Digging in to the candy.

Too much candy....

The boys and Grandma Doris

LOVE popcorn and LOVE our friends!

Ethan, Aidan, Lily, and Carly

Madagascar Live!

Our cool glasses (Aidan)

Ethan in a different kind of glasses.

Thanks for the tickets Grammy!

We've been having a lot of fun the past month just hanging out with friends and finishing up projects around our house.  Hopefully, the weather will get warm and stay warm soon and then we'll be outside all of the time. 

Ethan had a follow up in IA City this past week.  Aunt Steff rode along with us and then we had some fun shopping at the outlet mall.  Aidan, Daddy, Uncle Stephen, Connor, and Kayla stayed home and went to the movies and then out to eat.  Ethan was very cooperative at the doctor's office.  So much so, they just kept performing tests and doing exams on him since he was doing so well.  3 hours later, we were leaving their office.  Whew!  We learned many things at this visit.

1.  At the U of I Ped Ophthalmology department they diagnose about 2 children per month with albinism...that's a much higher number than I anticipated.  Good to know we are not alone :)
2. Ethan's nystagmus (eye bouncing) is nearly gone!!
3. It was clear at this visit that Ethan is not color blind!!
4. It was also clear that Ethan uses both of his eyes to see.  Most people with albinism only use 1 eye.  Ethan slightly favors his right eye over his left, but he does use both of them.
5.  Ethan's eye crossing happens in a "v-pattern".  This basically means that when he is looking down to view close up things, his eyes cross.  But, when he looks in the upper part of his vision, his eyes get into a neutral position.  This explains why he always tucks his chin and looks up.  Dr. Drack would like to do surgery in the near future to try and correct this.  She feels if we can get this corrected sooner rather than later, he will likely maintain the use of both of his eyes.  If we wait until he is older, his brain may get tired of always trying to compensate and eventual just drop using his left eye for vision.  She said this would likely leave his left eye in a crossed in position all of the time.  We would then have to go through patching the right eye to regain use of his left eye....yaddy yaddy yaddy.  All sounds like surgery sooner rather than later is in Ethan and our best interests.
6.  The prescription of his glasses changed quite a bit from the last time.  Although albinism isn't a progressive disease (the albinism itself won't get worse) his eyesight can change just like anyone else's.  We got a new prescription and will be getting new lenses and frames.  Ethan is such a little squirt and never seems to grow, but Dr. Drack did mention that his current frames are too small for him.  He must have grew when we weren't looking!
7.  We will try his new glasses for 10 weeks.  May 20 we return to IA City for another appointment, anticipate talking more in depth about surgery and possibly scheduling a date at that visit.  Until then....
 We'll post some pics of Ethan's new glasses when we get them.

Aidan meanwhile continues to be an active 3 year old who never ceases to amaze us.  Recently I was dropping the boys off at "school" for the day.  Aidan was really not wanting Mommy to go to work that day.  Here's our converstation:
Aidan: "I want to go to work with you Mommy."
Me: "Oh Aidan, I don't think you'd be much help in the OR today."
Aidan: "When I get big, I gonna be a Dr. Partridge so I can go to work with you EVERY DAY."

Maybe I'll be pulling this pic out when he is graduating from General Surgery training in 28 short years....Love ya Aidan!