Ophthalmology Follow Up and Update on Healing

We are just over a week after surgery and Cole is doing very well.  The blood has started to dissipate from his sclera (the white part) and the swelling has gone down almost completely.  He has done very well explaining his surgery to people he meets and was given an opportunity to share with his class on Monday morning.  We all continue to notice less shaking although we've also noticed his eyes seem to sometimes not align correctly. We are monitoring this and plan to talk to Dr. Hertle about it if it continues. This could mean that the muscles were not tightened correctly.

He had a follow up with his regular opthalmologist, Dr. Jeffries, on Monday, and she was very happy we had followed through with the surgery.  She said his eyes were healing as expected and saw no signs of infection.  She did a vision test and said he seemed slightly improved.  It was a somewhat disappointing appointment, however.  Although Dr. Hertle said we have a lot to look forward to with visual improvements up through the age of 15 years old, Dr. Jeffries said that over time the muscles will loosen and the shaking will increase again.  I've asked other nystagmus patients in the Nystagmus Facebook group about this and several said they have had this problem.  And so the roller coaster continues wanting to feel progress and hope and yet continually being reminded that the future is so unknown.  And so we continue down the road less traveled and pray that we are being led in the right direction.

Next on our journey is to consider contacts.  So I contacted Cole's optometrist, Robin Alexander at The Eye Center where we get his prescription filled to ask about contacts.  She has been AMAZING over the years helping us choose frames.  She said she wasn't familiar with having children as young as Cole getting contacts and although she can fill them, she had a lot of questions I couldn't answer.  We also will have no coverage for these since we will need to use the vision benefit for his frames.

I mentioned the challenge of having him fitted for contacts to the nurse when I made the follow up appointment with Dr. Hertle and she suggested scheduling an appointment with the optometrist at Akron Children's to have him measured for the contacts.  Given his eyes are still healing, he wouldn't be able to wear them yet anyway.  So we are scheduled to go back December 6th.  We don't want to tell the kids yet, but I plan to fly up with Cole.  Reagan is going to be very disappointed when she finds out Cole gets to fly on a plane.  Perhaps we will need to find a good excuse to take a trip somewhere!

Next up?  Cole is turning six!  Wow...