So, it’s been a while, but life gets in the way.
Since his heart surgery, Wesley has been doing amazing. He struggled to eat for a little while, and required a feeding tube and he totally hated the tube. He pulled out the tube regularly, to the point where I was almost late to a wedding because I had to turn around to go home to put it back in (since I was the only one trained in putting a NG tube in).
Since then, he has been eating everything required of him and more! He doesn’t like being spoon-fed because he likes feeding himself. Any sort of food that gets put on the table in front of him goes in his mouth. Sometimes, it even gets into his stomach.
He did have a stomach bug over Christmas, which he got because the entire family got it. He had to spend a few days in the hospital, but his ammonia stayed relatively low, so we’re counting our blessings.
He’s gotten his kidneys checked out and they’re perfectly normal and healthy. He’s also had his aorta checked out to make sure he didn’t have a re-coarctation. We’re happy to announce that he’s got no signs of re-coarctation and that everything looks good with his heart!
We were officially listed for transplant on January 10th! On February 10th, we were bumped up to 1A status, making him a priority on the list. We’ve gotten two false alarms since being listed, where we were called but the liver in question was determined to not be an appropriate match for Wesley. We’re still waiting anxiously, but Wesley doesn’t even notice. He’s trying to walk right now, skipping right over crawling. He’s also got six teeth coming in all at once! We’re approaching his first birthday, which is just crazy for us, because we’re amazed that he’s gotten as far as he has with almost no setbacks!
Wesley still adores Winnie the Pooh, but has added 101 Dalmatians, Charlotte’s Web, and Baby Signing Time (a series of ASL teaching videos) to his list of favorites. He also likes watching soccer with his grandpa and hockey with his daddy. We’re hoping that we don’t have to wait much longer for his transplant, but we’ll just have to wait and see!