Wednesday, July 20, 2011

Update: Ethan's Eyes

While on vacation last week, Ethan and his last visit to IA City before surgery.  Surgery is scheduled for September 1.  The first thing they did was checked Ethan's prisms.  They said they still feel like they have the correct prism strength, but Ethan's doesn't really like to use them, but rather looks over the top of his glasses.  They initially decided to leave the prisms off until surgery, but he noticed immediately that they weren't on there.  So, they put the prisms back on and showed me how to take them on and off.  They said I could use my discretion as to if he wears them or not.  Currently, we have them off.
Let's move on to an anatomy picture....

There are 6 muscles that control the movement of your eyes.  6!  Can you believe that?  The more I learn about Ethan's eye problems and how your eyes are suppose to work, I realize how complex our eyeballs really are.  Even more, how much we all take our vision for granted.  It's a wonder any of us are born with "normal" eyes.

Dr. Drack said that she is planning on working on 2 muscles in Ehtan's eye.  The medial rectus, which is located on the inner side of the eye.  This is the muscle responsible for his eye crossing.  She said kids that have this muscle operated on typically have pain for about 2-3 days.  She is also operating on the inferior oblique muscle, which attaches to the bottom part of the eye and wraps around to the outer edge of the eye.  This muscle helps you move your eyes up and to the left or right.  Ethan's right eye is much worse than the left.  When he looks up and to the left, his right eye completely disappears.  Ethan likes to call this his "trick" and show it off to people (see the video above).  He will often say it's because his eyes are "weird" or "special".  Dr. Drack said his eyes will always be special, but that we'll have to come up with a new trick for him, because she is going to fix this. :)  She said operating on this muscle usually causes discomfort for about a week after surgery.  She also explained that the eye is not covered by skin like the rest of our body.  When we have an operation on another part of our body, we see the "trauma" appear as bruising through the skin.  The eyes will "bruise" also.  They will go through various colors of red and purple for up to 6 weeks after surgery.  Most likely he will also end up with 2 black eyes. 

The Rules.  She said that there were 4 rules we must follow after surgery.
1.  Use antibiotic/steroid eye drops and eye ointment four times a day for 1 week after surgery.
2.  Do not get any dirt into the eyes for 2 weeks after surgery.
3. Do not get any water into the eyes for 2 weeks after surgery.  No more bathing with Aidan for a little while!
4. Do not let Ethan rub his eyes for 2 weeks after surgery.  Although she said this sounds like the most challenging of the rules, she said if you frequently remind him during the first 24 hours after surgery not to touch his eyes, most kids do a really good job.  But, since we can not be watching him 24/7 (like when he is sleeping) they will give us elbow restraints to put on him so we can't bend him elbow to be able to even reach his eye.  Gee, that sounds that great fun!

She said he would wear his current glasses immediately after surgery because she doesn't want to "rock the boat" too much. Eventually, she will begin gradually decreasing the prescription of his bifocal with the hope to get rid of it all together.  He will always have to wear glasses though.  She said that Ethan is a little bit hard to figure out because he doesn't follow the norm for kids with albinism, but he also cooperates so well with all of their testing, but she had a bit more information on him than she normally does a 3 year old.  Adam thinks we should get our operation for free since we have since a star patient :)

We've talked to Ethan just briefly about surgery.  I had him take a look at Dr. Drack before we left on Friday and told him to picture her all dressed up like Mommy does for work.  A hat, a mask, a gown.  I think we'll let him take this picture of Aidan along with him for support that day. 
For a 3 year old, September 1st is an awful long time away, so we'll keep talking about it periodically between now and then.  Our hope is that his eyes will be fully recovered from a successful surgery by his 4th birthday the beginning of October.  Until surgery day....

Sunday, July 17, 2011


Our month has kept us busy so far.  4th of July weekend was spent with friends at the parade and a BBQ back at our house.  The kids a had a blast all playing together in the pool.  The older ones played so good together and the babes all took nice naps.  The adults actually got to have some conversation!
Filling up the pool for the first time this summer.
4th of July BBQ
Luke and Owen
Adam's dad, Selwyn has amazing flower gardens.  He hosts a garden tour of his backyard every year.  July is prime bloom time for daylilies and they were beautiful!
This past week we have been on vacation with the Rash family.  We rented a house in the Galena Territory for 5 days.  It was beautiful.  We had a great, secluded area.  We saw many hot air balloons and even watched some fireworks from our deck one evening.  We played baseball, frisbee, football, golf.  We swam, we ate, we drank, we shopped.  Most of all, we spent time together.
View from our deck

Stephen grilling.

Baseball time!

The kids liked having "dance parties" together.  I couldn't get a video to upload here, so check out Facebook for videos of that.

We plan on finishing off the month by the boys getting to spend a weekend with Grammy while Adam and I head to Chicago to see Paul McCartney in concert at Wrigley Field with Steve and Steffani.  Where is summer going!?!?!?