2/23/19 - 3/1/19 - Some Changes

Going to make a few changes to the blog updates. Weekly, instead of daily updates. I’m thinking Fridays will be update days. Now that I’m home and things are warming up outside, my family and I don’t spend as much time around the computer…so, it will be much more comfortable to just do weekly updates. Plus, thankfully, I don’t have too much to write about besides my daily adventures. Thank you for allowing me to make this change. We did daily posts for a whole year! Now, for “the rest of the story”…(my Mom hopes you get that phrase).

I had a great 1st Birthday. We ahd plans to have a small party at home with everyone in my family that was feeling healthy and stuff. I was going to smash a cake and all of the silly things people do to celebrate a first birthday, but I was feeling kind of sick, my family members were out of town or ill and it just kind of didn’t work out. It’s really just fine with us. I enjoyed extra kisses and snuggles from my Mom and Dad. We are still chasing my Tachrolimus levels and I had to go to an appointment in Milwaukee to get my labs drawn again. It wasn’t exactly how I’d wanted to start my day, but my levels went up some, so it was a good trip. We are going to switch a couple things and I’m starting to take my Tachrolimus and my Mycophenolate by mouth now, instead of thru my G-tube. I’m doing so good with it. Mom and Dad are really proud of me for being so mature about taking my medicines. The idea, from the team, is that taking my Tachrolimus (mainly) via mouth instead of via tube will help to increase my levels. One, because Tachrolimus likes plastic and it is known to stick to it when given thru the tube and two, because I’m supposed to digest the medicines differently by mouth…quicker? Anyways, I hope this catches me up. I have been feeling sleepy, which is worrisome to Mom, who is constantly worried about hearing the “R” word again someday. So, knowing that my Tachrolimus level (the main medicine that suppresses my immune system so it doesn’t hurt my heart) is low is a scary thing. The transplant team has reassured us that my heart looks to be functioning well and not to be over worried. It’s still hard though.

These are what my new foot and hand prints look like. I have grown so much in a year. Mom said she’s going to make prints of my hands and feet every year to see how much I grow in my scrapbook. It was pretty fun to put my hands in the gooey paint! What else? I tried some new foods this week. I am eating everything in sight! Mom and Dad let me just try things that I’m not quite big enough to have, but can lick. I like Cheetos and pickled beets! YUM! Other than that, this week has been about me and about getting my numbers back together. Talk soon! -Heath

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