First Trip Back To Sick Kids

Now, I know when you read the title you may have been a little taken a back but you shouldn't be. Parker must return to Sick Kids twice a week for his PEG-ADA injection. Tuesday is the first of the two and Friday will be the second day he goes each week. In addition, he will also have his "Clinic Day" on Friday. That will mean he will get his blood taken to see how his numbers are. I am not completely sure if another flow cytometry test will be done with that sample but I know they will at least check his neutrophil levels. Recall that Parker was neutropenic for a while and it was suspected that the Septra was causing it. Parker is again on Septra so his neutophil numbers are to be monitored extremely closely. Neutropenic children are exempted from taking part in the gene therapy trial.

Our trip to the hospital went better than I had expected. We were definately a little anxious returning to the place that we had spent the past three months, but Parker took it in stride. We stopped by 8B to see the nurses and say thank you and then went down to Clinic 9 where Parker had his ADAGEN injection. Four-fifth of a millilitre of ADAGEN Parker took in his right leg. Right leg on Tuesdays and left leg on Fridays. The poor little guy did not enjoy it one bit. I sat there watching as my wife held little Parker's arms, someone else held his legs and then when he was steady the nurse gave him the injection. He looked so happy lying there, not knowing what was to come next. Then, as I sat there in the chair watching my little man, I saw it in his eyes. He looked at me wondering why I was letting them do this to him. And then, he began to cry.

As soon they were done, my wife grabbed her little boy and hugged him as close to her as she could. Then, when he would not stop crying she gave him to me and within a couple of seconds he was lauging at his mommy while his daddy held him. It was the first time I was present while he got his enzyme injection. I told them that he may have been crying, but he is definately much braver than his daddy who would have started crying before they started.

We are still working on getting Parker into a routine. He went down tonight just after eight o'clock. He was so tired, but again had a very difficult time falling asleep. Now that he is a sleep, he should stay that way until at least five tomorrow morning.

My wife and I would again like to thank everyone who regularly visits our site to read about our little warrior. Parker has become known as the little fighter and it will be that fighting spirit that will get him through this battle victorious.