Celebration of a birthday on earth and in Heaven

Cole is finally six and couldn't be more excited.  He was lucky enough to celebrate his birthday for an entire week!  We had Pop and Nana over on his birthday, took him to Cheesecake Factory over the weekend (he loves cheesecake), had his party with his friends and cousins the next weekend and then celebrated with his Grandma and Grandpa after his party.

He decided he wanted a party at his Dojang (Tae Kwon Do School) and share his love for Tae Kwon Do with his friends and family.  Majest Martial Arts does a great job hosting parties and all the kids had so much fun.  They started with a demonstration for the kids to see how well trained black belts kick boards.  Then they took a class so they could all break a board themselves and learn some Tae Kwon Do moves.  They even asked mom and Cole's Uncle Pat to break boards and they did !

The kids also had free time to play on the moon bounce and take a ride in the Majest limousine.  And a party wouldn't be a party without pizza, fruit and a cake cutting with a Korean sword!  My sweet boy decided instead of asking friends to bring him gifts he would make donations to the Ronald McDonald House in Akron, OH.  We will be going back in December and plan to take the donated gift cards to deliver them personally.  We look forward to being able to help other families who will need to stay there.

As tradition continues, we chose to light a lantern in memory of our sweet Kendall Kaye.  Unfortunately the weather did not cooperate on her angelversary this year so we moved the celebration to the following weekend.  It's always a somewhat difficult evening, but it's also something the kids have started to look forward to. They don't ask as many tough questions anymore so that makes the evening a little more relaxing. The sting is not quite so difficult, but the loss is still an ache in your heart that never really heals. Reagan has started writing notes on the lantern now that she can write.  Cole did ask how the lantern actually gets into Heaven...and of course I had to break the news that it's not quite as easy as going up in the sky or I would have done it already :)  He is so curious and I love it.  The other day he asked where the heat comes from in the car.  When I told him it comes through the vents he said, "no, how does it actually get hot."  An explanation of coming through the vents was not sufficient. Luckily Johnny is very patient and does a much better job explaining things like that than I do.

Other than school and activities being busy, life was pretty uneventful until this week.  Cole is unfortunately suffering from three days of head aches. I'm trying to work through a good routine with the school to call when they think he needs medicine but not send him home just because he says it hurts.  It's a harder formula to develop than you'd think.  Unfortunately he vomited on his desk at school today and hasn't stopped telling me about it.  We are hopeful tomorrow will be free of pain for him.  The neurosurgeon does not think it's shunt related given the pain is not persistent, but we are, of course, monitoring him closely.  For the last three days the pain is on and off from about 8am until 2pm and then he seems fine after that.

We are headed into the tough Fall doctor schedule so there will be lots of updates coming.  Hopefully they will all be boring !!  Both kids will be seeing their neurosurgeon and neurologist.  Cole also has an appointment with the low vision specialist and Reagan has an appointment with the orthodontist. All in the next week and a half!  What was I thinking?!

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...