He we go...

He we go with the first of what I hope to be many blog updates about the adventures of Nicholas and learning to live with Batten Disease.

To start off I will give a little history of Nick's progression with the disease up to this point; 

Nicholas was first diagnosed with Batten Disease Feb. 11, 2008 when he was 7 years old.  He had begun to lose his vision about a year prior but upon re-evaluation the doctors determined it was time to test for Batten Disease, his vision had decreased more than the they had expected.
Since his diagnosis, Nicholas' vision had progressively become worse and is now only able to see out of a small corner of his right eye.
Besides his vision loss, Nick struggles with ADHD like symptoms and extreme insomnia.  We have worked with many different medications to help but he continues to struggle with staying asleep at night.  (I'm sure you will see many blogs about our sleepless nights!)

School has always been pretty good for Nick.  Reading being his only struggle.  Up until these last few months, he was strong in Math and loved Science and Social Studies.  Unfortunately, the end of the school year started a big decline in his ability to retain and grasp new concepts.  He began to struggle with math and all other core classes. 
Nick will be in 5th grade next year and we have been considering moving Nick out of the regular classroom and into a special ed class.  Such a tough decision but we want to do what is best for Nick...

Having Nick battle this horrible disease has taught us so much - not all we have liked...
I hope this blog will help others learn what life can be like raising a child with a special illness and the challenges we face everyday.  I also hope to share some of the great times that always follow the difficult ones...

Thanks for following along,

Jill - Mom to Nick