Special Needs Dad 365

Happy Livy
Livy was up a lot last night. Her seizure pattern continues to change and we are seeing more of them in the evening. We’re still not sure if her new medication is working. There are some signs that one type of seizure she has may be reduced. However, now we are seeing more of a different type. We started weaning one med she is taking but had to increase it back to the original dose.

Allison and I continuously trade off checking on her throughout the night. Typically, one of us hears her on her monitor making some sounds. Last night, I was in with her at 11:30 PM, 4:00 AM and 5:00 AM. She also had a seizure in the 5:00 AM timeframe which is quite unusual for her. You would think at that hour of the morning, she would be tired and half asleep. Not this little one. She had the biggest smile on her face as if to say, “Dad, did you forget that it was sleepover night?” I swear she was given that smile as comic relief to her situation.

I cuddled up next to her and was finally able to get her to fall back asleep. Of course, I was up at 6:00 AM because I couldn’t fall back to sleep. Then, the day started with her first round of medicine at 6:30 AM.

While she slept, I sat sipping a cup of coffee trying to wake up a bit more. The quiet allows my mind to wonder although it seems to focus on how the rest of the day will transpire. When Livy has unusual sleeping patterns, we’re never sure how she will wake up. It can be a rather tenuous period. Today she woke up happy and ready to face the day. The big question for tonight is, will she go to sleep at a regular time or will she try to party until dawn two nights in a row? I am hoping for the former