Friday, July 31, 2015

Crazy Busy Week

This week was a long one for everyone. As summer keeps humming along, the last few weeks always seem to be packed with an increasing amount of things to do and places to go. Unfortunately, I had to travel most of this week - two days in Cincinnati and two more days in Louisiana. With me on the road, it makes a long week for Sarah, with no one to pass the baton to when she gets worn out. With the kids out of school of course, it is challenging to keep all three entertained.

Mira has had a rough few days. She continued to have some heavy seizures through the middle of the week, spiraling into a bad day today that involved a long of twitching, seizures, and repetitive motions, much of which looked very similar to the extended episode she had on her birthday. Sarah and I were on the fence today about whether to administer Diastat (as I was in the airport in Louisiana, with Sarah sending me videos of what Mira's episodes were looking like) and ultimately, we decided to wait it out. Fortunately, the activity subsided after about 45 minutes and Mira rested afterward.

During all of this activity today, Mira was refusing to drink anything, partially due to the seizures, but mainly perhaps, because she is really constipated. It is one of the things we really struggle with her and it is difficult to keep her in balance. When she is constipated, her seizures tend to increase and of course, her irritability skyrockets - she is obviously uncomfortable right now. Hopefully, everything will start moving for her soon - it is always a delicate balance with the Miralax.

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