by siteadmin | Aug 4, 2023 | Uncategorized
We took a trip down to Disney World in Orlando Fl at the end of last month and stayed for Halloween. It was a fun trip despite Nicholas getting sick as soon as we got down there. We think it might have been from receiving the H1N1 vaccination only a few days before...
by siteadmin | Aug 4, 2023 | Uncategorized
Finally Fall. Nicholas continues to be doing well. He has been using his walker at school sometimes and wears his AFO’s (leg braces), we just got him re-casted for the AFO’s because the first pair did not fit properly. It is difficult to determine if it is because his...
by siteadmin | Aug 4, 2023 | Uncategorized
Nicholas has been doing excellent for the past month. With only a few seizures last weekend. He had gone almost 4 weeks without a seizure prior. He is moving forward in physical therapy with great strengh and determination. He has started 1st grade at the...
by siteadmin | Aug 4, 2023 | Uncategorized
This month we have been so busy. I will start first with how Nicholas is doing. He really has continued to decline this month both with his eye sight and mobility. It has been very difficult for us to watch this rapid decline. Here is a picture of Nicholas with a...
by siteadmin | Aug 4, 2023 | Uncategorized
Hello! Sorry it has taken me so long to post July’s notes. A lot has gone on here and I will start with the best news first! William does not have Batten disease! He is not a carrier of my gene defect. We are still waiting for Chris’s gene testing to come back. The...
by siteadmin | Aug 4, 2023 | Uncategorized
It has been a while since the last post. Nicholas has been doing excellent on the new medicine regimen. He did have a small set back last Sunday with a small seizure but otherwise his mobility has been good. He is able to run around without falling for about 10-15...
