8/2/18 - Take The Bad With The Good


The Good: We had a great snuggle session today; Mom and I. It was a little rushed. Driving 5hrs every day to come see me takes a lot of time and she had to leave to go back home sooner than she or I wanted today. We made the most of the time we had, though. She never ever misses a day with me. We sat up in the big recliner chair for the whole visit. It was very, very nice. We both love snuggles. Dad and I will defiantly have to try to snuggle on the weekend. I am awake more during the day and sleeping more at nights now, so I have much more daytime energy for activities. I like sitting up a lot. I sat on Mom's lap and we looked at each other while she sang to me. I had a lot of fun. I really like when she sings to me. I raise my eyebrows and smile so she knows. We didn't read anything today. Just sat, snuggled and played. I was feeling her nose today. It's a lot different than mine. I also found the pretty necklace she wears everyday, the one Dad gave her a long time ago. She said I had to be careful not to pull too hard on it or it would break. So, I just touched the shiny dangley part with my fingers for a while. Then, I was feeling frisky and all of a sudden, she dipped me! She'd never done that before, but it made me giggle. She dipped me back again and then back up again...I giggled again. I don't know if I've ever giggled before? It was wonderful. I always give the biggest smiles I can when I am happy or having fun, giggle or not. Everyone of my girlfriends loves when I smile and they all give me extra attention then. In fact, while I sit with Mommy, there are cameras in my room on the ceiling that girlfriends and bro-dudes can watch me on. It sounds creepy? Anyhoo, they like to see me play. They usually tell Mom they saw me on the camera and want to tell her how much they loved my smiles or that they were proud of me for sitting up so good. I think I'm doing a good job...sitting up and learning new things. Do you think so? Let me know when you write to me next. What should I try to learn next?

The Bad: Today, I had that Echocardiogram. It didn't really go exactly how Mom and Dad hoped it would. It's a little confusing. So, I have a small clot showing up on the imaging in my heart. It's not as scary as the big Aorta one from before (the one that has seemingly dissipated), but it's a clot and is in a part of my heart that pumps blood to my brain. So, if this clot moves, it goes to my brain. I could have issues arise from that, if it were to happen, and could even have a potential stroke. Mom and Dad are now very worried, again. The care team did an emergency/just-in-case MRI of my brain today to check for bleeding and see if it was safe to start me back onto an anti-coagulant medicine again to help break down the clot. So, my MRI was looking okay and they went ahead and started the medicine. We kind of thought that this was done and over, the whole clot/stroke/brain bleeding scary situation stuff, now that I have a new heart...apparently it is not. It stinks. It's not fun worrying. I think the care team has a good management plan for this all though. Please pray very hard this clot goes away and that it doesn't travel to my brain. The care team will be doing everything they can to help me. They did say that, when looking back at my previous Echocardiogram pictures from before, they looked closer and see this same clot was possibly there before. In which case, it now looks smaller (if it's the same clot). So, now we do what we can and we wait. Again. I will get another MRI tomorrow to keep checking. Maybe an Echocardiogram again, too? Another scare...ugh.


Oh! Before I go, I wanted to share with you that today was the first day I have ever worn a regular onsie too! It might seem silly, but I've only ever gotten to where snap up outfits. So, this was very exciting! Do you like my outfit? Everyone says it suits me...because I am handsome. He, he. Okay. I have got to go to sleep so I can play tomorrow. Good night. Please continue your prayers for me, my family and my donor family. -Heath

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