Stop the Press!

I had mentioned in an earlier post that we had done an interview with the Toronto Star about Parker's disease. After speaking with them the past few days we were told that it is to be slotted on the front page of tomorrow's Saturday Star. In addition, I think there is a related story about the Gene Therapy trial that Parker is going to be taking part in Italy. I was told that they did contact the doctor in Italy for that particular article. My wife and I are elated at the amount of awareness for adenosine deaminase deficiency this will have as well as Severe Combined Immuno Deficiency in general. We definately look forward to reading the story tomorrow morning.

As for my special little buddy? Parker is doing very well. He did have his injection of PEG-ADA this morning. He handled it very well. He usually gets some tylenol about 30 minutes before the injection to ease his pain a little bit. But, to be honest, having his mother hold him after the injection is definately the best pain relief for him.

Parker is definately enjoying his new formula. Actually, I am not sure if he enjoys it anymore than his old formula or if it just doesn't fill him up the same way. It seems to be alot like Chinese Food. He will eat alot and then a couple of hours later he is starving again. To be honest, we knew he was going to be eating more on the new, less concentrated formula. Why wouldn't he? Last time I checked a milk shake is definately more filling than a glass of milk. Parker is now having 180+ mL (6+ ounces) feeds. He is almost polishing off a litre of formula each day (900mL+). If you consider that his formula has 15% more calories than regular formula he is pretty much is having a litre of formula a day. As a result of having a more watery formula, he is receiving more fluid and uninating more frequently. This is something we wanted to see, as we all know the importantce of water in your diet.

It is Parker's mommy's birthday tomorrow so please make sure to wish her a happy birthday. I already know her birthday wish. So make sure to check www.thestar.com tomorrow morning for what we hope is a great story about SCID caused by an ADA deficiency.