Saturday, October 27, 2012

In the last few days, it seems like Collin's fatigue may be turning the corner. He has been napping less (or not at all) during the day, but is still going to bed early and sleeping 12-13 hours at night. Thursday night was our trick-or-treat night, and Collin was excited to go. I expected him to just make it to a few houses and then want to come home, but he surprised me! We were out for an hour, and he enjoyed every minute of it! We did have to put him into his stroller after the first few minutes, but he didn't ask to go home once. After each house, he'd say, "Now what? Another house?" When we got home, he had fun looking at his candy. It was really great to see him have fun just being a kid!

This morning we had the honor of presenting the official Iron Butt Association certificates to the Guardian Knights who rode over 1000 miles in under 24 hours for Collin this past September. As always, we had a lot of fun with this great group of people. We really are blessed to have them in our lives!

The rest of this weekend we will be preparing for Sandy's arrival. Lee flooded our basement in the beginning of September of 2011. For nearly two months, our house was in a state of upheaval while the basement dried out and was repaired. The last thing that needed to be done to get the basement back together was installing new carpet. That happened on October 25 last year. The very next day was the MRI that showed Collin had relapsed (for the first time). We haven't had any down time since that storm and Collin's relapse (and really not since he was originally diagnosed in 2010). That storm last year was supposed to be the "once in a lifetime" storm, but now here comes this storm which sounds even worse. I can't handle the thought of flooding again. I am mentally and emotionally drained, and was really looking forward to having some time just to breathe after we got the great MRI results last Friday. But thanks to some other unforseen events this week, and now this approaching storm, a break is apparently not in the cards just yet. Collin is supposed to be seen in clinic and start his maintenance meds on Monday. I'm not sure if we'll even be able to get to the clinic; if we do, we have some concerns about starting Collin on a new drug in the midst of the storm, because if he has any serious reactions, it could be difficult to get to the hospital. The only thing we can do is take one day at a time, hope for the best, and never forget that things could always be worse.