Before Parker was diagnosed with SCID I rarely got sick. Those of you who have been visiting this site for a while will recall that it was only two weeks ago that I was sick at home for the Easter weekend. This morning I woke up extremely congested with a fever. Now normally when a parent is sick they do not worry too much and still care for their child. But with Parker, I am unable to. The chances of him catching what I have is far too great, and if he does catch what I have he will not be able to fight it. So I spend my weekend at home tending to my fever.
The problem with being sick on the weekend is that its effects are far greater than being ill on a weekday. It is the weekends that I get to spend more time with Parker. We can have 'daddy time' all Saturday afternoon and all Sunday. This also gives mommy a break. You can imagine how warm it can get in the isolation room with all of that sterile gear on. So by being at the hospital I can give my wife some well needed rest away from the yellow sterile gown. We are very lucky that Parker's nonna spends Saturday mornings with him as it does give my wife one day to sleep in.
The Toronto Sun posted an article today about Parker on page five. Although I was a little disappointed about how little was actually said about the disease they did give out the URL for this site. I figure that there is not a better site on SCID caused by ADA deficiency than this one. I do not normally toot my own horn but I can't think of a better way to learn about a rare disease then to follow a child and their family who is actually going throught it. They also were kind enough to mention that there will be a benefit concert at the Rivoli in Toronto on June 16th for Parker. Although the line up has not yet been set, I am sure it will be a great night for everyone.
I have continued to put the word out on the Internet about Severe Combined Immunodeficiency. I really want to make sure that as many people know about this disease as humanly possible. We were very lucky to have Parker diagnosed so early as it gives him a much better chance at being cured of the disease. We would like more parents to know that this disease does exist. My wife and I never understood why our baby had so few lymphocytes when he was supposed to be fighting an infection as the exact opposite should have be true. It was not until the doctor's at Sick Kid's told us what he had that we knew why. The hospital we were originally at just sent us home. So again, please look at some of the previous articles, check out some of my links and please let people know about the disease.
Before I finally sign off for the day. Tomorrow is the last day for the babiesonline baby photo contest. So please click here and vote for Parker. I want to post that he won the photo contest on Monday morning.
Saturday, April 29, 2006
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1 comment:
Hey Parker
You're so cute when you are sleeping on your Mama. Sorry to hear that you are missing out with your Daddy's playtime, I'm sure he will be there as soon as he can.
Wow Parker before you know it you are going to be sleepig with Winnie and his friends in your nice bedroom.
Stay Strong!
love you tons
Nonno & Nonna
p.s. Papa and Nonnie also send their love
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