- 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!
Another difficult day for Kayla today. She is experiencing pain all the way up her arm into her left shoulder. She is staying as positive as she can as she battles the pain. We took her to the museum of natural history today as a distraction. It worked for about an hour. Kayla also battled an hour of physical therapy in the pool at the local ymca with Aaron. She is strong and courageous, we have a true fighter! Can’t wait until Monday!!!!
This is what Kayla hopes to get back to very soon!
The countdown has begun! Kayla will begin the Cleveland Clinic Rehabilitation Rehab Clinic on Monday, May 20th. She is really looking forward to getting started. The pain has spread to her entire left hand in the last day but she is staying positive that she will have full use of her legs and hand shortly.