Made of Gray

6 Days + Help

Holly D Gray6 Comments
Today marks 6 days since Caleigh stopped TPN cold turkey. The normal saline fluid at night is working out well. Caleigh hasn't been sleeping very well since stopping the TPN though. My theory is that she is hungry and used to getting a lot of calories while she sleeps. Hopefully she will adjust to the new situation soon.

Yesterday we made our way to the DME showroom to try out power wheelchairs again. It's been almost a year since Caleigh tried the powerchair and so much has changed since then. Our appointment was at 1pm. Caleigh's nap is at 2pm. Remember she hasn't been sleeping well at night....

It was a mess. Caleigh was having no part of it. Everytime someone would take her hand to show her the joystick she would pull away. Caleigh's head position was just terrible. She was crying. I had her music blaring from my phone. The lady (who isn't our normal gal) wasn't taking our advice on the position of the joystick. It was basically out of reach. She started talking about numerous switches on a tray to make the chair go. So after a bit of problem solving I suggested we start all over on another day. Another day NOT so close to nap time and TPN wean. We made the appointment a month from now with our regular lady who will be back from maturnity leave by then and we also made the appointment at our house. Caleigh fell asleep on Eric's shoulder and then we left. Now just isn't the time. Needless to say I didn't take any pictures. We drove away feeling defeated. It was just one of those days.

Yesterday was also the day that I hired our first helper. I've been interviewing several people for awhile now. I started a few months ago and after going through several interviews I finally decided that I just need a regular run of the mill college student to help with Caleigh. Someone with energy. Maybe 20 hours a week. Turns out my pick has experience with g-buttons and CP. So Monday will be our girl's first day.Wish us luck! I'm hoping this is what we have been looking for.

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