Saturday, February 18, 2017

Day 2 and 3

Day 2
I got up at my usual time this morning and noticed that Ayden Jane's door was still closed. I realized she had not been up at all during the night. That is pretty big news as she was on a 4, 4;30, 5... spurt lately. I went about my morning routine and then I headed out the door ... before she was even awake!

Gary filled me in a bit on what I missed. AJ got up at 6:50 but ended up back in bed in full meltdown by 8:00. I am not even sure what the final catalyst was but mostly Ayden Jane needed to go back to bed with today's dose in her body.

Apparently, there can be a morning lull in the drug, particularly in the first week, that is quickly corrected once the new days dose is given. Sounds like it was pretty rough going there for a little while. We will have a three day weekend to be ready for school next week.

The rest of the day went smoothly, although she never did make it to school. I think that had more to do with it being the 3rd day of having a substitute teacher and it being more fun to be at home. When I got home she was in a NUTTY mood. Wanting me to wrestle and chase .. like the old days of needing deep input to organize her brain. When I was not enough fun, she went to her friends house in the neighborhood to bounce on the trampoline and play. Thankful for great neighbors!

At dinner we noticed 2 things. First, she drank and entire unsweet tea in about 30 seconds. Then went back for more. She typically drinks maybe half of a drink. Then, she inhaled her food. Also really strange because she is usually a very slow eater.

Day 3
Ayden Jane woke up at 6:30 and I gave her Wakix immediately.  She headed out to the sofa to watch TV and fell back asleep. I'm not really sure when she fell back asleep because, well, I might have also fallen back to sleep on the sofa. I do know she woke up at 9!! Really odd.

After a bit to eat we took the dogs for a walk and planned our day. I asked as we walked how she felt with Pitolisant? She said she feels happy and slept really well. I'll take it. We decided on a trip to Savannah's playground and a bit of shopping for our day.

No sleeping in the car. No hundred mile per hour talking to keep from sleeping in the car. No interview questions stuck on one topic. She read for a while, and then just sat calmly and looked out the window. I know that sounds crazy to note, but it is something she has never done. Her brain has always been working so hard in overdrive that if she stopped for a second, she was asleep. Today, she sat. Peacefully. Calmly. She sang to the radio. She occasionally asked me a question and then went back to just being quiet.

Oh, and the water thing turned up again today. She actually asked for a bottle of water. When I gave it to her she started drinking and then kept drinking. She asked me how I knew when I was thirsty. I tried to describe it and she just said that it is different for her, but maybe it is changing. She said she didn't know she was thirsty but she knew she had a snack and that wasn't fixing it so she wanted to try water. After she FINISHED the entire bottle she decided that was what her body was telling her.

So far, I am a fan. I am also amazed by the things that must be shifting inside of her somehow. I mean, a lot of the difference in her could just be a couple good nights sleep, but then there are the things like water? As long as Ayden Jane says she feels good we will forge ahead.

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