Nathan has been doing such a great job at day treatment that he was discharged today!
We have seen a tremendous improvement in his behaviors at home and he was having great days at the hospital. We are so proud of the hard work he put in to do this so quickly.
The hard part of this all of this is that we still are reminded that he has Batten Disease. What that means is that his brain is ever changing and it will be fighting an uphill battle to try and stay ahead of the regression and degeneration. We will constantly have to be on the watch to adjust medicines as needed and to be mindful that he can’t express some things to us the way others might be able to. We will have to watch for signs and that can be very tricky. This is still only 6 months new to us and we learn something new about this disease daily. Let me just say it again, I HATE BATTEN DISEASE.
What I will say, is I am thankful he is home and gets to enjoy his Christmas break at home. He is excited to be able to return to his school in January. We are so blessed that this Christmas we have so much to be thankful for. I will have my family gathered around the tree, and the only present I wanted this year was the presence of everyone. I will miss my Dad terribly like I do everyday, but know he is with us in spirit and nothing would have made him happier than to have his grandchildren have a wonderful day!
Thank you to all for your love and support.