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...
by siteadmin | Aug 4, 2023 | Uncategorized
Happy 6th Birthday Nicholas! We love you so much! Nicholas celebrated his 6th birthday with friends and famiy on his actual birthday May 9th. It was at the Bounce U at his request as it is a familar place to him and he had a blast. I was very worried that he would not...
by siteadmin | Aug 4, 2023 | Uncategorized
Lots of updates from the last post. Where do I start…… We recently had two doctor appointments last week. The first was a 3 hour ophthalmology appointment at Children’s hospital in Boston. A VEP test done (Visual Evoked Potential Test) in which electrodes were placed...
by siteadmin | Aug 4, 2023 | Uncategorized
Nicholas is doing well. Check out this picture of him on his bike. I did not think he could a ride a bike. He jumped on his bike and rode down the driveway faster than I could say “NO!”. I could not believe it. Next see him back at soccer. We have missed 6...
by siteadmin | Aug 4, 2023 | Uncategorized
Wow what a week…or actually 3 weeks. Nicholas has been very sick for the past three weeks with many more seizures. It was a difficult time for all of us. We thought the increase seizures were from a virus, levocarnatine or even a possible bacterial infection. The...
