We've been kinda quiet over the last few weeks because we've had a lot to celebrate .. Colin turned five, Mommy had a birthday and Colin's three year post diagnosis. It was two weeks of celebration with pizza parties, Durham fair, munchkins at school, presents, more presents, cup cake decorating and so much more.
Colin's counts remain in range however over the past few weeks we've been monitoring his IVIG level which is how the body fights off infections. It's been decreasing over the last month, coming in at 281 last week. The doctors like it to be around 500 and transfuse under 400 so with the fall and winter season ahead of us we began the process. The approval process for insurance took a week and he received the transfusion today.
Colin's port needed a jump start today but Colin was very patient. In the mean time, we tried a new trick with the Tylenol ... instead of the liquid we crushed a pill and diluted it in his 'med juice' just like we do with this daily oral chemo. Note to self: worked great!
Once the benadryl kicked in Colin was sleepy but quickly woke when Mikey's Way Foundation came by with their cart full of electronic gadgets. Colin chose a Leap Pad over a Car computer and quickly put it work! During the three hour transfusion Colin continued to fight off the sleepy effects of the benadryl by playing Candy Land, four puzzles and a bunch of movies.
We ended the day at UNH where we were honored and privileged to met the baseball team Colin was partnered with through Team Impact. http://www.newhavenchargers.com/index.aspx?path=baseball The guys were great and greeted us with a decorated locker for Colin that included a hat, shirt, helmet, munchkins, oreos and more! We prepared the team to meet the normal shy Colin and to our surprise they met the wild one. Perhaps it was the energy from the transfusion, the benadryl, nerves, or a combination of all! Whichever it was, although it was nice to see the energy, both Colin and Maddie's listening skills are something we definitely need to improve on! Everyone made us feel very welcome and are very excited to spend more time with our new friends!
Colin's Crew Fun & Hope: thank you to all our friends, family and supporters that came down to the Fun Hope event. We're excited about scheduling more meal & snack distributions with the funds raised!
Friday, October 5, 2012
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