Here is my first post. We boarded the polar express train in North Conway NH with 12 tickets the week before Christmas with family. This brought Nicholas tremendous joy to be on the train. He is an avid watcher of the polar express train movie and he knows every song. It actually brought tears to my eyes in happiness to watch him look out the window on the train. He believes!
Christmas week this year was also very special with family around and a lot of joy. Santa brought Nicholas a Lionel polar express train which was a big hit between he and his brother William! Everyone has been so generous toward my boys…thank you!
We (grandparents team included) met for the first time with a doctor at Mass General Hospital in Boston on Dec 18, who specializes in Batten disease. She is also on the Board of Directors at BDSRA. We still don’t have a exact NCL gene deficiency diagnosed. But, according to Nicholas skin biopsies NCL3 is ruled out. Labs will be re-sent and we will await the results.
We also met on Dec 22 with a ophthalmologist at Children’s hospital Boston. Nicholas is now documented with the diagnosed as being legally blind which is actually no change from the initial diagnosis in September. This will provide him with more services. It was good there were no changes since September.
We have been approved for a service dog through an agency in Ohio. It will be a epilepsy, sight and mobility dog. We are really excited by the news of approval. Now we have to just figure out how prepare for the addition to our family next summer. Hope it will be able to keep up with my fast paced Nicholas.