Monday, February 29, 2016

STILL Up All Night

Well, I've set a new non-blogging record. And I can tell you exactly why.

If you've read my post from last month, you know we had to keep Avery up all night so that she would sleep through a special MRI type test the next morning at the hospital. Long story short, I thought there was no way Avery could do it, but she totally proved me wrong. I was amazed. 

I shouldn't have been.

The fact is, for many years, Avery has had a hard time sleeping through the night. So she might be nodding off at 7 p.m. every evening, but she certainly doesn't stay asleep. We've been lucky enough that through the years she has mostly kept calm and happy during her intermittent insomnia. We've tried different things, like melatonin and adjusting her meds, but nothing seems to solve the problem. 

Last May that all changed when we realized Avery was having frequent and intense seizures at night that were lasting much longer than we'd ever seen. The seizures were waking her and causing even more insomnia than usual. So the hub and I also started waking more frequently when we heard her up, nervous she would have another seizure. Before these changes, we had finally started turning her monitor volume down each night! We could still watch her on the screen, but didn't have to listen to her frequent wiggle and giggle sessions. The volume went right back up in May! And sleep for the bubs went right back down.

When Avery had the super long seizure in the middle of the night this past fall that sent us to the ER, we decided that we needed to keep an even better eye on her night activities. So we invested in a camera that could record exactly what she was doing each night. As you might have guessed, it's been both a blessing and a curse. 

There is no doubt that I want to know exactly what kind of seizure activity is going on, but watching these videos is not fun in any way. She is waking and seizing far more than we thought.  For the most part, they are very short spasm-like seizures. The problem is that one of these 10-20 second seizures can wake her and then she is unable to go back to sleep FOR HOURS. On the average she is up for an hour surrounding a seizure, but three hours is not uncommon. And then she might be up again with another spasm within the next couple of hours. It's insane. 

Here is an example from the other night:
Up at 1:43 am
20 second seizure at 1:53am, another short seizure at 1:58am, multiple spasms at 2:18am
Back asleep at 3:03am
Short seizure at 5:48am and back to sleep

And another night:
Up at 1:30am
20 second seizure at 2:35am
Back asleep at 3:31am
Up again 6:05am
Short seizure at 6:45am and back to asleep

I know you get my point.

All of this to say... WE ARE SO TIRED. And by we, I mean hub and me, because Avery still functions during the day per usual. She only very occasionally seems affected by her night time craziness and I understand now it's because she's used to it. We are not. We are up in her room all of the time after hearing/seeing a seizure, or worried she's about to. Frequently we are in there together, holding her during a particularly long one, hoping we don't have to use any emergency meds. It takes a toll. Like, a toll on top of a toll on top of past tolls.

I am no longer able to keep the nocturnal hours I am so used to and therefore blogging has gone even more by the wayside (Sad face). Right now I am up way past my new bedtime because a)Bub the hub allowed me a very nice nap before dinner and b)I felt like leap day was a good sign/nice extra day that should be taken advantage of. 

We are hoping and praying this doesn't go on much longer. We started a new medicine tonight and we have a few other things to try as well. We are not without hope. I want to be able to share some good news in 2016! 

Here are my girls on Valentine's Day,
and one tired face mama in the background

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