Message Number Fifty

I would like to start by apologising for not writing the past two days. I have been so busy at work and at the hospital that I have been so exhausted by the time I come home I am unable to write. That said, I was able to sleep in this morning since Nonna is at the hospital for Saturday morning. I am rejuvinated and ready to write another article. Believe it or not, this is actually the fiftieth post I have done since I started. I would like to thank everyone that comes each day to read my articles as it is nice to know so many people care about our family.

Parker received his third injection of PEG-ADA without a hitch on Thursday. He was receiving his rejections on Mondays and Thursdays but the injections are going to be moved to Tuesday and Friday starting next week. This will allow us to make one less trip to Sick Kid's once we get to go home. Once we go home we will have to return for the injections at clinic. Clinic will consist of checking his complete blood counts (CBC) to make sure that everything is going well with the PEG-ADA. The new injection dates will coinside with the clinic date (Friday) so that we may make once less trip downtown.

I was doing my regular research on the disease the past few days. I have spent most of my time focusing on the different types of white blood cells in the body. While doing this I came across some great footage of a neutrophil attacking a bacterium. For those of you who would like to take a look please click here to see what Parker was missing while he was neutropenic.

Parker had an x-ray done yesterday. The doctor was worried that his respitory ratae was creeping up again over the past week. Athough we do feel that there are some variables that may account for the data depicting this we did agree to have the x-ray done. Mostly because we were curious to see what his lungs looked like. Recall that Parker does have some protenosis in his lungs and that caused his respitory rate to be increased an forced him to be on oxygen for quite some time. We were pleased to hear that the x-ray not only showed his lungs not to be worse than his last x-ray but did display some clearing in some portions of his lung. That was good news. Obviously we would like his lungs to be completely clear we are happy that he does not display any worsening symptoms.

I heard Parker laugh yesterday. I mean laugh. I was sitting with him in the chair beside his oxygen saturation monitor (which he no longer uses) and I would bring him to the monitor and then pull him away so he could not see it any more. As a result he would open his mouth with a big smile and then start laughing. I have never seen anything so funny before. My wife and I just looked at each other.

Parker will begin a less concentrated formula on Monday. He currently has his formula concentrated so it is 3800kJ/L but will drop down to 3300 kJ/L. This is still elevated from the normal 2800 kJ/L concentration but will allow him to have more fluid. The dietician is concerned that Parker is not receiving enough fluid since the formula is concentrated so much. She did suggest we could give him water once in a while but we opted for the decreased formula. Parker is continuing to gain weight at a above average rate. We do expect him to be at the 25th percentile very shortly.

For those of you who live in Peterborough. The Brick at Lansdowne had a tent sale and bbq yesterday. I believe the proceeds from the bbq are going to Parker. Thank-you very much to The Brick for doing that. It is truly appreciated.