1/30/19 - So Much


Today had it’s ups and downs. I was so happy to wake up, eat my breakfast, get my medicines and then see my Grandpa come thru the front door! He and I are best buds. Mom went to work for a while, so He and I played tractors and watched cartoons. It was great. When Mom came home, I know she expected me to be napping, but I was still going. Wild and happy and crazy fun times! grandpa went home and Mom and I called to schedule all kinds of appointments we have been trying to organize. That’s something people who don’t have a life like mine, just don’t understand. It’s really hard to stay organized and we take a lot of time making phone calls, traveling and all the other stuff, just to make sure I get to appointments. So, after a few hours of calls, we got my G Tube change scheduled for next week, my labs and general heart check up and Echocardiogram re-scheduled for the same day so we only have to travel once, and also got my Physical and Speech therapy set up with a new provider. Our old therapy “providers” kept canceling or just not showing up for in-home therapy, so we are taking the risk of going to a hospital close to us for my therapies. Hopefully they will respect that I am immuno-suppressed and be very honest with us if anyone is sick. It’s a little scary, to be honest. Now, the G Tube change appointment is a big deal and we were so excited to get in next week for it because not only is my current feeding tube completely and literally falling apart, but we just want the new “button” so there is less for me to pull on. Mom is scared I’ll pull my tube out. I mean, I do play with it often when I can spot it or feel it, but I don’t pull too hard. It would hurt. Anyhow, we got a lot done today. I had a fun day with Grandpa. I also had the best cat nap in the toasty sunshine (even though Mom said it was -26*F outside today at noon!). We always lay a cozy blanket down in front of the patio door for me so I can look outside, enjoy the warm sunshine and i just love the spot. When i woke up from the nap, I was all giddy and played with my toys. I love to bang, destroy and kick everything right now. Mom calls my Mr. Destruction. I don’t think I’m that bad. Just wild. -Heath

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