Life in the Crazy and Back to Cleveland

We returned from Cleveland Clinic late on a Thursday night, and Friday was a teacher in-service day, so there was no school. Little did we know that there would be no school again for a long, long time! Daniel hasn’t been to school now since the end of February!

Launched involuntarily, with the rest of the country, into a social-distancing, mostly isolating, home-schooling world with one child who had been well-loved and cared for, but missing us, and the other child on steroids affecting behavior, emotions, eating and sleep, with two already exhausted parents has been very, very hard. Having everyone home all the time has been very hard on David who regularly works from home anyway, but in healthcare IT has been even busier than usual, and now has the constant interruptions and noise of the family.

Daniel’s sleep has been severely impacted by the steroids and every single night has had multiple interruptions. Most nights I have been staying with him for at least half the night to help to calm him. David has very kindly let me go back to bed in the mornings while he manages the kids early in the day, but we are on a trajectory of progressively greater sleep deprivation overall. My work has been significantly impacted and I am just doing what I can to accomplish time-sensitive tasks. Daniel continues to be very emotionally reactive – with highs being very high and lows being very low and irritability, angry outbursts, name calling, throwing things and the like happening multiple times most days. He’s also eating like never before – asking for things like mac and cheese and cheeseburgers for breakfast. His face is looking rounder, as is expected when on steroids long-term. Thankfully we have Daniel’s aide for 20-30 hours each week. This is a huge help, and you might think we shouldn’t have any issues with that kind of help, but she can’t be responsible for all of the disciplinary intervention, mediating sibling conflict, and home schooling, meal planning, activity planning, etc.

I see comments online about what kinds of things people are doing with all of this “extra time” they have being quarantined at home – house projects, baking, cleaning, learning new languages and taking up new hobbies – and it blows my mind! Really?!! None of that is happening here, so don’t be looking for any amazing sculptures or posts in Lithuanian from this household! That’s not to say there is nothing good happening here – we’ve been reading a chapter together in a book each evening before bed, the kids have had some good “Art” classes and made some nice paintings and they’ve been fed every day and even dressed some days which I’m considering an accomplishment. We also have friends who live right across the street from a very lovely quiet park and we have gone there numerous times where the fresh air is wonderful and the kids have appropriately distanced interaction with a friend. This also helps David when the rest of us can get out of the house and he can work in peace for a bit.

In regard to Daniel’s seizures – it has been concerning that he has had four seizures since the EEG monitoring at Cleveland Clinic. This is a pretty high rate of frequency for him, and we don’t believe that we are on the right medication for controlling the seizures. When we were there last month and Daniel was started on the steroids we were told that in 4-6 weeks he would need another 24-48 hour EEG to assess the effectiveness of the steroids. If the nighttime ESES pattern looks better, he will continue on the steroid for a six month course. If it does not look like it is being effective, he will come off the steroid. We had an admission scheduled for April 21st back at Cleveland Clinic, but last week we decided to move it up. Our rationale originally was that we would give it maximum opportunity to see if it is working. But, it has been so hard and we are so tired that our rationale is now that if it isn’t making any positive change then we need to know that as soon as possible so we are going back this coming week. We leave on Wednesday and Daniel will be admitted on Thursday at 1:00 p.m., right in the middle of Nurse Jen’s shift! She knows we are coming and both she and Daniel are very excited to see each other again. We do have a little bit of concern about going to a large hospital in the midst of this CoVid-19 pandemic. We will be taking precautions, of course, and would be grateful for your prayers for our protection on this trip.