8/4/18 - My Head

Up in the Bumbo, in front of my Dad today...He was SO proud of me! He helped with my head and I sat and talked with him. I like to talk with my hands, like he does. We say something and wave our hands just because. I can't make sounds yet, but I use my hands and eyebrows to say what I need too and Dad usually understands. He helped my dinosaur Troy come over and visit with me, too. Troy's teeth looked pretty white today. That's because he was naughty when I left my room to go have my MRI this morning. He was trying to eat my Moose while I was gone, I told him that was bad. He's a work in progress. Dinosaurs are not good pets, but I still like him. He keeps the scary things away from my crib while I sleep. 

I had a busy morning. First, a nap, then down to have an MRI on my head. They want to keep a look out for bleeding issues. I'm on the anticoagulant medicine and since last time I was on it, I had bleeding in my head, they are being very cautious this time. Which is good. When I got back to my room from that I had an ultrasound on my head, too. The care team is hoping they can do ultrasounds in place of MRI's for now. So they did one today to see if they could see the same things the MRI showed. I don't know the results of that just yet. I'll let you know later. I think the bleeding is still under control. Otherwise, they probably would have told my Mom and Dad. You can see my brain on the screen in the picture below. It's pretty big, I'm smart...he, he, he! The tech that does the ultrasound uses the wand on the top of my head because there is still a soft spot where my skull is growing and it's an easy spot to see thru. They can usually get a nice image because of that. It's kind of neat, but I wish I didn't have any bleeding or issues that they needed to do all this for. I am a very good boy for all the medical stuff though. I hold still and am patient. I also got to be on regular oxygen thru a normal nose cannula today for my trip to have the MRI and since I was doing good and my numbers were still good, they said I could stay on just the regular cannula! So awesome! Less stuff on my face. 


You may have noticed the outfit change...two words for that: Huge Blowout! The whole bed, up my back, on my clothes, on my pillow, in my hair. Mom and Dad were right there the whole time and never even knew until Mom smelt something funny and thought...oh no. I like to challenge their parenting skills. Prepping them for when I come home. We may have missed out on a lot as a family, but we are excited to catch up! Well, kind of...yuck! Mom and Dad teamed up and got me cleaned up, bathed and clean. Then, I had visitors!

My cousins came to see me! We had a great visit. My cousin even smooched my forehead and I thought that was so sweet. I'll see them again very soon when I get home and it's safe to. I was so happy to hear a new voice though. They are my family and we've never even met! Isn't that weird? Mom and Dad have never wanted too many visitors for me because my condition has been so unstable, but now, within reason and in the safety of my hospital room, some of my family can meet me for the first time ever. We figure it's much safer to visit here and now, than when I get home. I need to be a little secluded for a while, when I first get home, until I'm stronger. It's sad to Mom that I am almost 6 months old and just meeting them, but we can't think about that stuff too much. Can't change anything, right? I fell asleep when they were about done visiting and ended up sleeping the rest of the afternoon. I needed a little nap after a busy morning. It was a nice day. Thank you for all the messages last night! thank you for continuing to pray for me, my family and my donor family. We all need and appreciate the good vibes. Good Night. -Heath

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