Saturday, July 15, 2006

Moving Kyla and Disneyland

Emmy at Disney Land. Look at that happy face!

Brian came home from Spain last Friday. Needless to say he was shocked by the deterioration of Kyla and so sad to see her this way. She is declining at a fair pace and is now moved out to our home and I have taken a leave of absence to care for her. Her knees are very weak and she can't get up from a low sitting position without aid so it is quite difficult for her. She knows her mental state as well as her physical state is changing and this bothers her most. But she is not showing much emotion about things because the area of her brain that controls that was affected by her last surgery as well as the disease. It is probably a blessing because if she were sad or scared I just couldn't cope. It is heartbreaking enough to watch this wicked disease steal her away from us and feel so helpless to do anything to stop it.

Hospice has been so wonderful. There are some great people working to help people like us. Last week a volunteer came and videotaped Kyla for her girls. She plans to return this next week to do a little more if Kyla feels up to it. The hospice chaplain is really sweet and comforting to Kyla as well and seems to put her at ease. The nurse is visiting once a week at this point and will come as needed. She has been helpful to get Kyla back on track on her Decadron which she had stopped taking (she thought she was).

One of Kyla's greatest wishes was to take Emma to Disneyland this summer as promised. Her co-workers in Linguistics submitted her wish a few weeks back to a wish foundation but because of her decline we could not wait for them any longer and planned the trip for this week. Jed and Emma went as well as Jill who is caring for her while there. She needs a wheel chair and help going to the restroom as well as someone to manage her medications. They have been having a good time and I am so glad that she could follow this through for the sake of creating a wonderful memory for Emmy. She was even able to go on some of the rides with her. We are so very blessed to have such wonderful kids. I don't know what we would do without them. Kyla is so very loved by all of us. I will post soon with some pictures of Disneyland and of course Lucy and Byron, who Wade and I took care of while their mommies were gone.