Made of Gray

Our Week

Holly D Gray4 Comments
This past week was super full. I feel like a broken record lately, but there just doesn't seem to be any down time.

We went up on Caleigh's Artane dose on Wednesday. She started having liquid stools with the increase, but things are starting to slow down. We've seen some little improvements here and there, but it's hard to say if the Artane is the reason for those.

We made it to the zoo once again and Caleigh did even better the second time. I enjoy the change of scenery, it's nice.

Friday night the med port on Caleigh's feeding tube came open, which is totally my fault because we usually wrap it in press-n-seal. I was lazy and didn't do it. After changing Caleigh's sheets, clothes, & diaper; she was up for the long haul. That was about 1am. I got up and down with her for about 3 hours and then finally climbed into her bed. I listened to Caleigh grind her teeth for about 30 minutes before she finally fell asleep. On top of that one instance, Caleigh hasn't been sleeping well again. She's up needing to be repositioned several times a night and she isn't wanting to fall asleep as quickly either. The other night I counted 9 times that I had to reposition her. I started counting after 4 just for the fun of it. My body is having a hard time making up for the lack of sleep. I'm tired. I hurt all over, but mommies just keep going, huh? Last night Caleigh only got us up once. I'll take it because I do feel a tiny bit better this morning. I'm hoping her recent disturbed sleep isn't from the Artane.

We are also starting the work on Caleigh's bathroom remodel. We've had 2 contractors out this week looking at the job. To receive assistance with ADA accessible bathroom remodeling we have to get 3 bids and go with certain approved contractors. The 3rd contractor is set to come out tomorrow evening. The plan is to take down some walls, widen doorways, replace the sink with a wall mounted roll under sink and create a roll-in shower area. I've got the vision in my head. I just hope it works out the way we are wanting it. The roll in shower will be a blessing. Lifting Caleigh out of the bathtub is getting to be very difficult.

Homeschool Preschool is going well. It still takes 1-2 hours depending on the activities for the day. Most of the time we do it in the morning. There have been a few times that we do it late in the afternoon because of appointments. I can tell that things are soaking in. I integrate Proloquo2Go as much as possible and I think it's helped with understanding for both of us.

This week we also went and picked up Caleigh's new glasses frame. She broke a spring in the first frame so we picked up the replacements. It's the same frame, just new. Luckily they have a great warranty system. We are still going once a week to have them adjusted. She continues to pull them off repeatedly. Tomorrow is the follow up eye appointment. Kinda dreading the whole thing, but hoping it goes well.
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