Friday, November 10, 2006


My apologies for not writing yesterday. I was quite busy, and to be honest, I thought my wife had written such a wonderful article that people would not mind reading again. I have just installed a new OS on this computer, SUSE Linux 10.1 so bear with me over the next few days as I try to iron out some of the wrinkles.

We had our trip to Sick Kid's today so that Parker could get his ADAGEN injection. Recall that ADAGEN is PEG-ADA and supplies Parker with the enzyme his body is unable to produce. His body needs a constant renewal of this enzyme as it does not stay in the body for very long. ADA (adenosine deaminase) is attached to polyethylene gycol (PEG) to increase the amount of time it is available to his body. As always, Parker was a very good boy for the injection. He cries while the fluid is being injected into his thigh, but smiles and laughs as soon as it is over and his mother is holding him again. The goal of the gene therapy is to modify some of his cells so that they can produce the enzyme on their own. As a result, he would have a constant supply of an unmodified version of adenosine deaminase (no PEG attached to it).

Although Martha Stewart would probably think it is wrong, my wife had me put up the Christmas Trees yesterday along with the rest of the holiday decorations. I have yet to put the lights or decorations on the trees yet, but at least they are up. I did this while I battled with Linux to install.

I have been planning on creating an article that includes some of the more important events during Parker's Battle with ADA deficiency. I hope to have it done for tomorrow, that way I can use it as my weekend article.

I just noticed, because of all of the noise while I write that my wife and Parker are sitting behind me while I write the article. Parker is definitely a much more vocal little man. I really think he is trying to have a conversation with us. I am not sure what language he is trying to communicate in but it does resemble English to a degree.

The past couple of months we have been working on getting Parker to master clapping. Until recently, his version was putting his hands together and banging them against his mouth. Just recently I noticed that he is finally pulling his hands away from each other and then bringing them back together. It seems like an early version of clapping to me. Now, I know I have made predictions before about Parker's development and although I don't always get it to the actual day he reaches the accomplishment I am willing to bet that Parker will have mastered clapping by his ten month birthday plus or minus two days. So that would mean no later than November 17th. Let's see if I am correct.

1 comment:

Natalie said...

Hi Clappy Pants!

Wow! I bet that your Daddy is will be clapping up a storm in no time! As always you look cute as a button in your photos! You are such a little monkey!

I hope that you have a wonderful weekend little one. It is a cloudy day in Toronto today so it is a good day for cuddling and watching a good video! Let me know what exciting things you end up doing...maybe even clapping!

Lots of love,
Auntie Natalie xoxoxo