More ups and downs

We are settling into a bit of a rhythm here at home. Injection is first thing in the morning. Micah still greets Sandy with a smile and only starts to get upset when the alcohol prep begins. He's a pretty forgiving kid!

We have spent some time outside, since that's fine for Micah. He just needs to avoid places where there are many people (and germs), like church, grocery stores, daycare, etc. While the first day home was pretty nasty weather-wise, we have had a string of nice days in a row. We are trying to enjoy them while they last! Our new maple tree that was planted late last fall is turning a bright red--just what we had hoped!

Micah continues to have some mild side effects from the ACTH--mostly some irritability and occasional trouble going to sleep. But he's still sleeping through the night, so it's hard to complain! His blood pressure and other warning signs are fine. But the past two days have been discouraging. Thursday and Friday we really thought that there were significantly fewer seizures, like half as many as we have seen recently. But then yesterday was not a very good day. We saw 25-30 again. Then he had too many this morning, first thing. But now he has gone for several hours without any that we have seen, so we hope this will continue. This is a frustrating disorder! And disorder is the right word. It's not predictable. It is not rational. And it doesn't follow any kind of pattern.

We will check in with our doctor again tomorrow. It is likely that we will increase Micah's dosage from 40 to 80 units per day. We hope he will still tolerate that well, and that it might do something more to relieve the seizures.

Last night David and I were able to get some time away together, thanks to my parents, to celebrate our birthdays. We did a round of disc golf at Oxbow Park and then had dinner. A nice, relaxing, not-too-late evening.