As many of you know from my earlier post, the boys did a walk for Cancer today. They went to Cleveland with my parents and had a really good time, for a really good cause. 

They had a really good time and behaved very well.  🙂
However, when they came home, my parents pulled Lizze and I aside to let us know that they were concerned about Gavin.  They noted that Gavin was very pale, sweaty and clamy on the car ride up. These are all signs of a pending Autonomic Crisis.

After the walk, he complained of chest pain again.  🙁

My Dad also made the comment that Gavin’s not all there anymore. He’s slipping and it’s becoming more and more apparent to those around him..

The latest example is a book he just read. 

Gavin’s been reading this book at school called A Hero’s Journey.  I may have butchered the title, so I’ll have to double check.  Anyway, he just finished the book on Friday. 

One of the few topics that he can talk about is this book that he’s reading.  He tells people all time that “I’m reading a new chapter book at school called A Hero’s Journey and I’m on chapter………”

The first thing he’s always asked is what’s the book about?

His response is what concerns me. 

He will reply to the question like this, “it’s a chapter book.  It has 537 pages and 52 chapters.”  He can’t remember anything that happened in the book. 

I know that reading comprehension has never been his strong suit but not remembering anything from the 537 pages he just finished reading isn’t normal for him, rather it didn’t used to be. 

You have to know something about Gavin.  He used to have the most amazing memory I’d ever witnessed. 

He could recall the dates and times of specific events, with very little effort.  I could ask him when we celebrated his birthday last year and he would rattle of the date, time, what we had, what he got and who was there. 

He remembered everything in such detail that it was simple stunning. 

Any more, I can give him his meds. Five minutes later I’ll ask him if he had his meds and he can’t remember. The sad part, aside from all of it, is the fact that he knows he should be able to remember but he simply can’t. 

I know this is about Gavin and his life.  However, as his father, this scares me beyond words.  I’m so lost and I have no idea how we are going to pull of a trip to New York to see this specialist. 

We need to get there sooner than later and probably before the winter weather comes around.

I still need to hear back from the Cleveland Clinic on the referral to Cornell.

Life isn’t getting any easier……not that I expect it would.  That doesn’t mean I’m not hoping it will.

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