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.
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.
6 comments:
Congrats on getting help! Hope it works out really well. A run of the mill college students sounds great - no preconceived notions about how things MUST be done (we have had too many nurses with that attitude).
Hope Caleigh starts sleeping better soon. That can be rough on everyone!
As for the power chair, I have no doubt that Caleigh will do great when the timing is right. As you said - this was probably not the time. Don't feel defeated. Caleigh is strong and determined and she will get it.
Dawn
I am so hopeful that Caleigh will find the perfect chair...hoping for a better next visit.
Good luck with the new girl! I hope she helps you and C out! :)
I love your blog and found it through a post you had on CPMoms yahoo group. I did have a question on the power chair - how do you know that Caleigh should have a power chair? Emma has an adaptive stroller now and I didn't really think to ask for a power chair so I guess I am wondering when you know they are ready for a power chair. It seems to me like Emma and Caleigh are very similar in motor control so that is why I ask. Thanks!
Happy to read you could see all the reasons the DME appt did not go well.
Wishing you a good match with your 'girl'!
Barbara
SupeR! Well, the help part is super. The wheelchair part nto so much, but those kinds of days happen to all of us. Hopefully, your next visit will be better.
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