Oh the things I can do!

If any of you are finding this blog for the first time- I want to tell you that it gets better.  All the fears and worries that you are having right now... I promise- it gets better.

6 years ago (almost to the day!) I worried so much about all the things Tommy would NOT be able to do.

Here is a short list of the things he CAN do:

He can ride a bike (still on training wheels, but that has nothing to do with his eye!)

He can ski downhill!  (We are going on 3 years of skiing now!)

He can read!! (Ok, he's learning)

Even when patched!

He can explore in the woods:

He can do so many things.

The list of things he can't (right now) is short.  He doesn't love roller coasters (but is that his eye or his common sense?), he does take time to get used to new sets of stairs, and he still hates his patch.

This EYE that was so much of a part of my worry when he was little- has not held him back at all.

Infant Aphakic Contacts vs "normal contacts"

If you look closely, you can see a bulge in his eye- that is the center of the contact!

Tommy's Contact- look at that bubble!



Daddy's contact- look how thin!



I am constantly amazed at how thick Tommy's contact in.  I can actually see a bulge in his eye- which makes it easy to spot, but must be slightly uncomfortable.  That bubble in the middle is not solution- it is his thick contact!   To put it in perspective here is Tommy's contact, a prescription of +23 dipters to his dad's prescription of -3.25 diopters.  Yes, that is a difference of 19.75 diopters!  (His dad does not have aphakia)

Found: 1 Very Expensive Contact

Wow- the contact has been found!  Our wonderful daycare provider found it today- hooray!  She found it sitting on the couch- plain as day.  We lost it Friday and she found it Monday morning after I told her about the loss.  It was a little curled up, but not the shriveled mess I expected.  She put it in the contact case with saline solution and we plan to disinfect it tonight.  Let's hope it is unscathed!

I already ordered a new one from the optometrist- if this one works, let's see if there is a way to stop the order!

Missing: 1 very expensive contact

We lost our first contact.  I don't know exactly when it happened, Tommy woke up on Saturday morning with no contact.  I don't remember exactly when I last saw it in his eye- it has become habit to look so it barely registers in my mind anymore.  I searched his car seat, his bed, each blanket he played on in the last 24 hours- no luck.  I scoured his clothes, my clothes, and the chair where I feed him in his room- no luck.  We had been out to dinner and shopping the night before- my guess is that we lost it somewhere while out. I'm so mad!  Mad at myself for not checking before we leave anywhere, mad that each contact costs $250, mad that I have no idea if our insurance will cover it or not.  I'm also mad that it happened on a Saturday- the optometrist isn't open until Monday morning, then they have to order it.  He will be without a contact for at least 5 days- 5 days where he won't be gaining strength in his bad eye.
I'm doing my best no to rant against insurance companies here.  I've done my best to figure out what our insurance will cover for contacts.  We were considering getting supplemental insurance, but wanted to wait to see if our primary insurance would cover contacts.  I called the insurance company on three different occasions- and no one could give me an answer.  A claim has to be filed before they can tell me anything.  (How backwards is that?)  So far, they appear to have paid for his initial contact and his first change in prescription.  I guess this will be the real test to decide what they will cover.

Lost and Found

Tommy has been wearing contacts for about 5 weeks now... and he finally lost one.  Of course, we were not at home, and he had not been home since we put it in this morning.  We noticed that it was missing at gymnastics... and my mind was racing.  For some reason, this made me super-stressed, which is silly, since it was only a matter of time before one was lost.  We poked all around his eye, poor little guy, and finally we admitted defeat.  I looked in his car seat (covered in a fuzzy sheep-skin blanket) and there it was!!!  Covered in lint, but happily sitting right at the bottom.
My obsessive-compulsive preparation came in handy here.  I had dutifully prepared a kit with contact lens solution, contact case, and extra patches.  Today, we needed it!  We rescued the contact and stored it safely in the contact solution.  Phew, it is like I just saved $260!

The day after surgery

The appointment the day after surgery was pretty non-eventful.  There was a lot of waiting (our appointment was at 8:30am and we didn't leave until 12:30pm!) and very little talking.  We saw the ophthalmologist, the ophthalmology resident, an optician, and a nurse.   The ophthalmologist looked at his eyes (after they dilated them, of course!) and said that the surgery aspect looked good and there was still too much swelling to tell how much the PHPV would affect Tommy's eye.  Ugh, more waiting.

The optician and the nurse came and fitted Tommy for his contact.  The ophthalmologist came back and decided on the strength.  Then came the hard part:  trying the contacts on!
We had a very nice nurse- he was funny, nice, and professional all in one.   He brought a fitting contact and popped it into Tommy's eye like it was nothing.  Tommy barely blinked.  Then he taught us.  When I say "us", I do mean that he taught Tommy's dad.  Since Tommy's dad wears contacts, he was elected to be the contact guy.  Interestingly enough, the nurse told us that in his experience, it is often the father's who put in and take out the contacts.  I watched, and I will probably have to learn... but will do that in the safety of my own home!  He then showed us how to "pop the contact out".  When he did it, it looked easy- again, Tommy was unfazed.  Now it was dad's turn to try to put the contact in while the nurse was there to help.  He was nervous, but when he tried to put the contact in, it was as if he had been doing this forever!  I was quite impressed.  Getting it out was a different story.  The nurse told us to "pull the eyelids open, push down, and the contact will pop out!"  Sounds easy, right?  It isn't.  Tommy cried and dad felt bad, so we let the nurse take it out.  After all, the poor guy had been through enough eye trauma with the surgery the day before!  While I am describing what it was like, I realize that I was too chicken to do it.  I am completely impressed at his willingness and ability to do this, and I do dread the day that I have to do it alone.

One of the scarier parts?  The nurse told us that the contacts cost $500 each.  FIVE HUNDRED DOLLARS!  And that some kids lost one contact a week.  YIKES!  I had half-heartedly tried to find out what our insurance covered before this visit- but now I am on a mission!