I am quite tired as I write this, so I apologize in advance if it is less than coherent. We have been settling in (again) and adjusting to some new routines. Elias' Neurologist felt that raising the doses on his seizure med - Keppra and his rescue drugs might help the prolonged seizures from happening. That will also keep us out of the hospital each time one occurs. There are still no obvious answers as to why these are happening and even more interestingly, why now? What is really frightening and frustrating about these are the fact that this second seizure started in the middle of the night, while Elias was asleep. None of his monitors for various vitals were ever triggered, so it is something that has to be watched for closely. It adds a new dynamic to his awake and alert care needs at night. So basically, this past week has proven that seizures are now an addition to the already long list of diagnosis and issues. It is frustrating and stressful to say the least.
Elias has been happy to be home and doing well. It always amazes us how far behind we get when he is hospitalized. We were just getting caught up from the admission a month ago. Katharine and I have been pretty tired and even borderline ill, mostly allergies we think/hope. Sleep deprivation is also among the issues we are battling, but we are working on getting that under control. Surely that is also contributing to the way we feel.
We will hit the ground running next week beginning with a neurology follow up from this hospitalization. We also have several other appointments on deck this week, including Elias' pre-school activities here are home. There is rarely a break in the action. Once again we can not convey enough our appreciation for the support, thoughts and prayers from each of you.