Thursday, October 25, 2012

Joey's Eye Surgery: Take Two

Note the new head tilt.

Tomorrow morning at 5:30 am we will head back up to the Cleveland Clinic.  Joey first had eye surgery on both eyes on July 2nd to help correct the way his head was tilting backwards to accommodate his nystagmus. Since he had open heart surgery last summer we didn't think too much of eye surgery.  What I didn't realize at the time was how much impact and change having the position of both of your eyes moved can have on a little guy. He seemed to be blinking a lot, holding his eyes closed to readjust and often putting his little head down on the floor when he was just too tired to try and focus his eyes.

That was the first 8-10 weeks post-surgery.  The next thing that happened was that his left eye suddenly started to not follow along. He had never had a "wandering" eye before his eye surgery, but suddenly it appeared that when he would look to the left his left eye would just keep going until all we saw was the white of his eyes while his little blue eye ball disappeared somewhere to the left. 

I was in complete and utter denial about the wandering eye. It was an "X" factor that had never been mentioned as a possible side effect. As I seem to forget and then get so rudely reminded of is that parenting is a series of thinking you've got things down only to figure out what you really knew nothing at all and you can never truly be "prepared" for the worst.  I've come to the conclusion that the only thing you can prepare for is to be unprepared.  Make sense?  I'm not sure it does either.

In addition to the new wandering eye, we noticed that he stopped trying to stand up or pull himself up and trying to get him to stand up at a table for any period of time has becoming increasingly harder and harder.  Then he started doing the head down in his hands on the ground thing.  A lot.  Like every day.  At school. 

Then came the head tilt as you can see in the photo above and the one below:
And again, note the new head tilt.

This is a new head tilt.  One we had not seen before. Again, like the wandering eye (my husband noticed, I turned a blind eye...) I was in total denial about the head tilt until the doctor asked us a few appointments ago if he always tilted his head like that.  Like what?  Oh, like that.  Like to the side so he can accommodate his new wandering eye.  Ummm.  Nope.  He hadn't done that one before.

We were sent home with about 100 eye patches and told that we needed to get him to wear it for an hour a day, which worked until 1) the mini cupcakes ran out that I used to bribe him with while he had his eye patch on and 2) he learned how to rip his eye patch off quicker than it took for me to turn around.

Unfortunately, the eye patching is necessary because when someone has a wandering eye, THEY CAN LOSE VISION IN IT.  Huh?????  What?????  Seriously????  So we go back and forth and he wears his patch for about 1 or 2 minutes and then rips it off the minute I try to wash a dish off or answer the phone.  Oh, Super Joe.  Hopefully no more eye patches.

So tomorrow morning we go in bright and early and he will have surgery on his left eye only this time. If you think of it, please say a little prayer that everything goes smoothly so he can get back to preschool on Tuesday and be in the Halloween parade at school.  Speaking of school, Joey barely looks at me once I take him to his classroom, but now when I pick him up 2 1/2 hours later he has started bawling when it is time to leave school.  This is from a boy who barely every cries. I am taking that as a positive sign that he enjoys our time apart and I'm trying not to take it too personally.  

In other areas he has had a pretty major month.  He has started using a spoon (and kind of a fork- still working on that one) pretty well.

He usually alternates one bite with his spoon and one bite with his hands and such meals usually involve an entire outfit change, but it's worth it.  He loves applesauce, yogurt, cottage cheese and his blended fruit and veggie mixtures I buy in those cool pouches from Target.

Almost two weeks ago we took him in for his third modified barium swallow study and we were told that not only does he no longer need to be on honey thickener, but that he "has the swallowing skills of a typically developing two-year-old."  Never have I been more excited about being considered "typical"!!!!

The results of this swallow study were so drastically different from our prior swallow studies that I burst into tears when I heard the news.  They said that their clinic almost never prescribes the honey thickened level to any child and that he should have had a follow up swallow study done much sooner.  That being said, we have decided to step down gradually and he is now using the nectar consistency and hopefully after the eye surgery we will try to go down to nothing at all.

One wonderful trick I learned from a friend is Kefir, which is packed full of probiotics and which is thicker than regular milk.  It is now one of Joey's new favorite beverages.

Hello Sasha Rose, Miss Maureen and Miss Kelly!!
Finally, on Monday Joey had his CBC levels, thyroid levels and lead levels all tested.  He's been having some weird infections (in the folds of his ears and on his toes) as well as petechiae on his trunk in the front and in the back. In the world of down syndrome where the risks of childhood cancer run 20-40% higher than the regular population, infections plus petechiae can set off warning signs.  What we have finally concluded is that when we are really worried we ask for a blood test.  As simple as that.  By late yesterday afternoon we learned his thyroid levels were back to normal as were his CBC counts.  Whew!!!!  Go Super Joe!!!!  Just for that news alone we feel so blessed!

Speaking of cancer, did anyone watch Katie today?  With Ronan's parents? Were you in a sobbing heap after watching it?  I was. Have you ever seen a boy with such beautiful eyes as his?  He passed away on May 9, 2011 because of Neuroblastoma cancer. You can visit here to learn about his story. You can go here to buy the song Taylor Swift wrote about his life.  Donations from the purchase of the song go to the Ronan Thompson Foundation.  Hugs your babies a little closer this weekend.

We are hopeful that tomorrow's procedure is super successful and that it is the last time he has to go through this eye stuff.  In the meantime I have tried to take a video the night before any procedure so we always have something to compare him pre-surgery and post-surgery with.  Please note-- there would be more video of Tommy, but I could not convince him to put on any clothes.  Our new bath time/ night time routine involves me blowing bubbles into the tub, then them getting out and having a dance party until I can wrestle them each into pjs.  Good times!

Video One:

Video Two:

Have you told your kids today that you love them to the moon and back?  I hope so.


  1. Good luck tomorrow Super Joe! Will be thinking of you and keeping you in our prayers!

  2. Yay for the swallow test and no more thickener and also to using utensils! Happy thoughts and prayers for you tomorrow morning!


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