Just Close Your Eyes
Maddie keeps Nicole and I on our toes constantly. It’s no different for the blog topic as well. I was actually going to talk this week about how much better Maddie’s sleep has been. I was going to praise her new sleep routine, until this weekend happened.
Earlier this fall, Maddie actually went to see a sleep specialist. I’ve documented throughout the early stages of Maddie’s diagnosis that children with Angelman Syndrome have issues sleeping. This was Maddie through and through.
After seeing the sleep doctor however, we experienced a breakthrough. The sleep doctor suggested that we tighten up Maddie’s sleep hygiene. With our family being fresh out of Nicole’s nursing schedule, Maddie’s bedtime was varied. She would either start her bedtime routine at 7:30 or 8:30, depending on if Nicole was working.
The sleep doctor told us to pick one time, so Maddie starts her bedtime routine every night at 7:30. An hour before, we give Maddie a half milligram of melatonin. The last thing we were told to do was talk to Maddie. If Maddie is rolling around in her crib and not going to sleep, we are supposed to open her door and tell her to go to sleep in a soothing voice. This way she knows that mom and dad are just right outside. It’s supposed to be a comfort.
We implemented these strategies and within a week, it worked like a charm. Maddie started sleeping better through the night. Occasionally she would wake up at 3 am, but for the most part she was sleeping by 7:45 and wouldn’t wake up until 6 am.
Then the last two nights happened. Maddie is fighting off yet another cold. So a lot of this isn’t her fault. However, I’m scared this is going to turn into a pattern. On Friday night, Maddie was up from 10 pm until 3 am. Thankfully it’s the weekend so I decided to let Nicole rest. Sure enough, Maddie was up for Nicole at 8 am. So this little girl really only slept 5 hours.
Then came the horror of Saturday night. Maddie was up from 9 pm until 4:30 am. Again, I wanted to let Nicole sleep so I shouldered the responsibility. Again, Maddie was up by 8 am.
These two sleepless nights wouldn’t be concerning, if it wasn’t for Maddie’s previous seizures. Any stressors could exacerbate her condition. Sure this is tough on me, but it’s tougher on Maddie. We’re continuing Maddie’s sleep routine but keeping a close record in case this isn’t illness related. This could be a sleep regression. We just pray this is a bump in the road.
-Written by Adam Birchmeier
