This morning Nick forgot how to wash the shampoo out of his hair. Yesterday he couldn't remember how to take the cap off his water bottle.
It's getting more and more difficult for Nick to remember how to do the things he does everyday. I'm hoping this is just a phase and he will bounce back but I can tell it is a little frustrating for him as well.
His short term memory is showing some challenges as well; forgetting about conversations we have had as soon as they end. This doesn't happen all the time but on occasions...
Nicholas is also having a hard time being outside. When I am outside with the other kids, he will scream and cry if he needs me before he will come out to get me. Yesterday I was on our deck and he would walk up to the door and knock to get my attention but wouldn't open the door.
I really hate this disease and hate what it is doing to my son...
Thursday, June 30, 2011
Friday, June 24, 2011
Update on doc appointment
Nick and I had a rainy trip to Iowa City on Wednesday. Met with his psychiatrist to hopefully change up some of his sleep meds. We are starting him on a new one tonight and we are hoping for a good nights sleep soon!!
This was our last appointment with this doctor, whom we have really liked! He has finished his training and is moving out of state. This is one of the downfall of going through the University of Iowa for appointments but in the process I hope that Nicholas has taught them as much as they have helped us over the years.
This was our last appointment with this doctor, whom we have really liked! He has finished his training and is moving out of state. This is one of the downfall of going through the University of Iowa for appointments but in the process I hope that Nicholas has taught them as much as they have helped us over the years.
Monday, June 20, 2011
ZZZzzz
Hoping for a good night sleep for Nick and all of us tonight. I looked back at my calendar and noticed it has been since May 8th that Nick slept through the night!! We go back to see his meds doctor on Wed. Will most likely try something new, if there is anything else to try!
Monday, June 13, 2011
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
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
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