Dear Friends;
I know it has been a couple of days since the last e-mail but the days go by and sometimes it is so late when I have my own time that I'm just plain tired. Amanda is doing better - baby steps - but it looks like the OKT3 is working. Yesterday they scoped her and looked so much better, they also took a biopsy but we don't have the results yet. We also had another transfusion yesterday because she was a little low. I want to thank everybody for donating blood at the school on Thursday; believe me it is in great need. Amanda continues to have a NG tube and continues not to speak. She mouths words, but very little. She continues to have nausea and that makes it harder for her to move about.
On Sunday we were able to get permission to go downstairs in a wheelchair for about 15 minutes. Amanda when out of her room must wear a mask to protect herself against any kind of infection due to her immune system being so suppressed. She handled the outing pretty good but was very tired.
I have to say that things are going well right now, and being a nurse I am knowledgeable of the medical ups and downs and understand what the body is doing, but no matter how much I think I know I have to say that living these last 5 weeks has been an experience I was definitely not prepared for and has been the must difficult thing I've had to do. Mike and I have been parents of a sick child for eight years, although Amanda's illness is a little deceiving because there are times Amanda feels good and to look at her she looks good and even though Mike and I know she is sick it gives you a false since of security. Even with knowing Amanda would be sick the rest of her life when we were told in April that she needs a transplant that was devastating news. The 7 months also wasn't even enough time to prepare us for what is happening now. We have met parents everyday going through the unimaginable situation of watching their child suffer so, not only during transplant but coming back to the hospital months and years after with complications, and it is very scary for Michael and I to face this reality.
I know in my heart Amanda is a fighter and will do good in what ever path lies ahead. So for now things are looking better and we thank you for all the kind thoughts; they really do helps us as a family get through this rough time.
Love
The Buddemeyer Family