Thursday, January 22, 2015

ON THE GO LATELY - SUPER FUN (mini vaca) AND NOT SO FUN (Cincy appts)

We had the best time ever this past weekend. Colby and I packed up and headed out Friday afternoon to hang out with another SMA family about 80 miles away. Fun, fun, fun. Seriously, we both had SO MUCH FUN, and I'm pretty sure the other family really enjoyed us visiting, too. The kids had a blast spending time together. We mommies enjoyed hanging out together, enjoying a gimlet here and there. They were very accommodating, and it was really interesting to see how another SMA family goes through their daily routine. We do the same thing, only different. I do believe a good time was had by all. Actually, I know we all had a good time. Many wonderful memories made. Wish we could pack up and do it again this weekend!

Colby's friend, D, had a list or “schedule” as she called it, waiting for Colby of all the things she thought they should do over the weekend. I must say, we did many of them. The kids played games – Boom Boom Balloon, Bingo and Fact or Crap. D is way into face painting, so yep, she painted Colby's face like a vampire and Colby painted her face like a devil. The pictures are priceless. D has the coolest, half-tailed cat, Mikon. He really warmed up to Colby and vice versa. They have trained this cat to eat cat food off a spoon, so of course “feed Mikon with a spoon” was on the list and Colby did that, too. Colby and I got to play Wii for the first time. What can I say, we don't get out much. I'm probably forgetting something we did while hanging out at their house. If we were awake and upstairs, we were playing, as it should have been!

The weather was decent so we got the kids out of the house. Our friends thought of everything for us, and arranged a friend to drive us around town so I could sit in the back with Colby and care for him. How wonderful and thoughtful was that? Saturday we went to a pet store and Sunday we went bowling. Colby got to hold a couple birds, one of which pooped on him a little. He held the cutest little puppy, I want one. We checked out the fish and of course Colby wanted to check out/hold a ferret. Can't explain this boy's fascination with ferrets. We'll be getting a pet once we move into our house, but I assure you it WON'T be a ferret. So yes, imagine 2 SMA Type I kiddos rolling up into a bowling alley. Oh my. I'm sure it was a sight to behold. But again, it was super fun! Now I'm thinking Colby might need to have a bowling party for his birthday this year. I stink at bowling. I like to bowl, just absolutely suck at it. I bowled an 89 I think, and Colby had an 83.

We did NOT want to leave on Monday. But really didn't have a choice. We got home, unpacked and reorganized, then headed to Cincinnati Children's on Tuesday. Colby had appointments with Wound Care and Endocrinology. Wound Care because he has a never-healing sore on his ear and now has started showing red marks on his bottom. I'm not messing around with that. Endocrinology because Colby is due for an infusion to help with low bone density. We had to wait until he was completely healed from spine surgery to do the infusion. So my phone calls in the near future will include lining up the infusion to be done at home, along with getting pre and post infusion lab work done. Also need to work on getting this air-filled pad thingy Colby's PT has recommended that is supposed to help with pressure areas.

Ok, you've been updated on the goings-on around here. Visiting with our friends was fabulous, but getting back to reality has been rather sucky. That's the way it always is though, right? Time to get rolling for the day. Maybe I'll get this Christmas tree packed up and out of the living room. Don't judge me. But then again, maybe I'll program some of our trip pics on Colby's eye gaze so he can show his high school buddies when they come to visit today. Yes, the pics take priority. Of course anything with Colby takes priority. As it should be, the little stinker. More soon. Hope to be sharing house updates soon. Haven't worked on it much since we've been out of town. Still can't believe we have a house! Super good things going on around here. We are very blessed. Trying to follow the “too blessed to be stressed” philosophy, but honestly, I'm a little wigged out right now. Many phone calls for Colby and much to start doing on the house. But it will all fall together as it's supposed to, I'm sure of it. Bye for now, blog reading peeps.

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