- Today was Kayla’s 1st day pass given from the hospital. She was allowed to go out with us for up to 8 hours and “breath” for a bit. It has been nice to have our family together again, and the sound of the 3 of them talking in the back of the car. Kayla has had to walk for 5-8 minutes every hour with the assistance of the walker. Except for these times she is still in the dreaded chair.
The last couple days have been hard on her, she has been experiencing dizzy spells and blurred vision. We think this is due to some of her meds that were upped and have readjusted with the help of the hospital. See a little improvement today, hoping that will be gone in the next day or two. The increased pain has not changed and still an ever present part of her life.
We had a informal sit down with Kayla’s Dr yesterday and he thought that she will have to be in the inpatient program a week longer then originally expected. This will be reevaluated again after next week. From what he said she is a worse off then he originally thought and unfortunately every child is different in the program.
She has therapy tomorrow morning then we get to take her our for a couple of hours for the holiday. Wishing everyone a happy holiday weekend!