Sorry for the delay in my posting we have had a lot going on.
We survived our road trip to and from Disney. It was actually not too bad of a drive. The hard part was at 3am when I was trying to hand over the driving to Jason and we were both too tired to keep going so we pulled over for and slept for a couple hours. The trip was great. The boys had fun riding the rides. Caitlyn had an appointment inside the castle for her princess makeover. She chose Ariel's wedding dress. I will post some pictures soon.
We can finally start to feel summer coming and this is a very fun time of year for me. I enjoy being outside with the kids on bike rides, walks, or just getting a blanket out and laying in the yard. Caitlyn has already started her summer picnics. She had one this weekend with Grandma Margaret. The boys and Caitlyn got their bikes out, and Caitlyn has been having so much fun riding hers. She has a list of things she feels she must do and I'm trying to keep up. I have learned no matter how sick kids are (or mine anyway) they still have more energy than me.
A lot has changed with Caitlyn in such a short time. By the end of our trip Caitlyn was showing symptoms. They all came so fast, just like they did a year ago. She has lost her balance she can not go up and down stairs alone. Her speech is hard to understand at times. Her left side of her face has lost some of it's strength. We started her back on steroids last Friday to help her regain her balance,vision, and speech.
However with all of this she did make it to school last Friday for 2 hours. She insisted on going. It's important to let her keep a connection with the other kids. She loves school and always feels so happy after she goes.
Now for her treatment plan. This has been quite an ordeal waiting for somthing to open up and watch her decline in the process. I can not put into words as a parent how this has torn me apart inside.
She had a MRI yesterday. There was concern about pressure; but the mri results show that the ventricles are still open, meaning she will not have to have a shunt. There is a new drug we are going to try called nimotuzumab. Since it has been recently approved for use in the United States, Children’s Memorial Hospital needs to pass some review processes before they can start administering the medicine. We are hoping that occurs this week. In addition Caitlyn is going to have surgery to get a chest port. Her little veins are shot from all the needle pokes...so this will hopefully make administering medicine easier. Caitlyn is a good patient -- but as you can imagine after all she has been through - she is not a fan of needles; so we are hoping this makes trips to the doctor a little less traumatic.
Thank you for all your prayers,
Kara
