This Fall Nicholas started 4th Grade. It is still hard for me to believe he is also almost 9 1/2. An up date on Nicholas. He had not had a seizure for about 6 weeks which is the longest stretch he had gone for a while with out a seizure. But when they came back, they came back with many. He had a rough first three weeks in October with a lot of seizures, hallucinations, myoclonic jerks and he seemed over all lots some of his “spunk” He missed a lot of school in these weeks. He was also sleeping very poorly. He was awake during the night almost 3-4 times a night. We are now finally coming into a week where he is nearly down all the increased meds we had to give him to stop the cluster seizures. We remain with a slightly increased dose at 6AM.
Otherwise. Nicholas continues to receive most therapies at school. He comes home at12:30PM and looks exhausted.
In the past few days Nicholas’s heart rate has been elevated. He seems to be taking big gasps of air but his oxygen level stays even and stable. We are not sure if this is just a neurological change, a big twitch and or myoclonic jerk. We are looking into getting a EKG and check x-ray in the next few days which will us figure out why he continues to make these gasping sounds.
On the weekend we still try to stay as active as we can. As you can see in this picture with Chris and William we went bowling. I think Nicholas liked the sounds of the bowling ally.
We still try to get out of the house as much as we can. You can see in this second picture how Nicholas, William and I roll when we go out on “no school days”, Chris still has work so here is a trip we made to the mall. William is a good helper.
Have a good fall and thank you for your continued support. Will update again in December with all the upcoming festivities!