Wednesday, July 19, 2006


It has been around 11 weeks since Parker started getting his enzyme injections. His numbers are higher than they were before he started taking the injections but only because they were non-existent pre-ADAGEN. We do know that it takes a while for the injections to start to take more of an effect, so I guess we just have to have some patience. That said, his IgG came back 0.2 higher than last week. This is the first time it has ever increased by itself. This is definitely a good sign. It most likely means that his body it starting to predates the antigen by itself. I am hoping that the result of the TREC test that checks the number of naive T-cells coming out of the thymus is available for clinic this Friday.

As a scientist, I understand that a number is useless without its units and error. I say this because a lot of the numbers I get for the blood work come to me without a unit on them. This Friday, when I am at clinic I will be asking what the unit is for the numbers that they have been giving me. It is kind of hard to compare them to the normal values when I am unsure of what the units are. I mention this today, because Parker's calcium level is high. When he was on highly concentrated formula it was also elevated. Once his formula was made with the regular amount of calories, they stopped taking his calcium levels with his CBC. I had requested that they been done a couple of weeks ago and yesterday it was done and came back with the value 2.52. It is frustrating not knowing the unit for that value. We were told that 2.44 is the upper limit for calcium in the blood. I found the range 2.2 - 2.6 on the Internet as being normal.

I ordered the first year immunology textbook that the medical students use at the University of Toronto a couple of days ago. It should be here today. Those of you that have been reading the blog for some time now will know that I believe knowledge is extremely important as I go through this with my son. My family has come to expect that I be as knowledgeable as possible about his disease so that we can obtain the best care available. I guess it is like getting your car fixed. Most people do not know much about cars and when they go to a mechanic to get something routine done they end up getting a whole lot more. Why? Because when someone tells you something is wrong and you have no idea what they are talking about it is hard to dispute it. I am definitely not comparing the doctors at Sick Kid's to my mechanic but there are definitely some similarities in my analogy.

Parker slept until 4am last night. He probably could have slept through that but my wife gave in to his stirring and baby calls. He is currently in the other room having a conversation with his Nana.

We had the immunologist look at his rash yesterday. They feel similar to what I do in that they believe it is a heat rash and fewer clothes, corn starch, and no moisturizer is what we should do at the current time. If it does get worse, and does not improve by Friday, then the dermatology team will take a look at him during our Clinic. Let's hope that it is only a heat rash. I like knowing that Parker was kept free of infection while staying in our care instead of his isolation room.

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