5/26/18 - Buff N Tuff


I had the best day today! I started the day off with an early bath date with my girlfriend on night shift. She got me all snazzy and squeeky clean. I have enough hair to make a mohawk now and my cowlicks on my head naturally make it go into one. It's pretty rad! I look kool. One kool dude here...ha! After my bath, my bro-dude was here to hang out for the day. I had a big poop and we started the day right with a good nap! Well, I napped and he did his nurse stuff. It was good. 

Before I knew it, I woke up to Mom poking at me and Dad touching my toes. "He is here!", I thought. I missed him all week, for sure. We visited a long while today. He got darker. He says the sun does that. I can't get as dark as my Dad someday though...I have to be careful of the sun. Lots of sunscreen in my future they say! It's because, when you have a transplant, you have to have lots of medicines...your body can't manage cancer causing things well any more. So, the sun could cause skin cancer (Melanoma) in my body very easily. It's a risk, but not a big obstacle. No problem. Mom says sunscreen smells good anyways! 

Dad gave me my rattle and we worked out together. I did the heavy lifting and he made the grunting sounds. I did 1-2-3-4...5...6 big lifts, picking the rattle up high in the sky. I can hold it pretty good now! And it's easier to lift. I used to throw it; when i was littler...now though, I use it to get stronger. Mom and Dad are bringing me some other rattles tomorrow so I have different weights to use when I do my workouts. I don't have therapy on the weekends beacuse they only work here during the week. So, on the weekends, we improvise. I think tomorrow, Mom and I, will try to convince my Bro-dude to help me sit up a while and maybe get to chill in my Bobby pillow a while, too. We will see what tomorrow brings.

Oh! I wanted to tell you all that they did a "test" today with my ventilator to see if I would do okay without it. This was only the first of many "tests", but i did a great job and they are so happy with me. Mom and Dad feel pretty uncomfortable with the idea of the ventilator being taken away as support, but it's probably what's best for me. The thing about the ventilator, is that the doctors have told my Mom and Dad (in various ways) thru-out my hospitalization that the reason I need the ventilation is not because I can't do the breathing on my own, but rather because the ventilation makes less work for my ailing heart. So, it's hard to understand right now why the ventilator can all of a sudden be taken away? It's confusing beacuse my heart is not stronger/better. We will get to talking more with our care team here and make sure that my parents and I really understand what the deal is and why things changed. Then, we will update you guys. As of right now, though, I may have this tube removed and be off the ventilator next Tuesday! Holy Wow! Right?! We will talk later about that...

Anyhow, hope you guys have a good Memorial Day weekend. Mom said that Memorial is a day on which those who died in active military service are remembered. I have a bunch of family who have been in the service. My Dad was in the Navy and my uncle Kev is still in the Army. They are awesome, but I am glad they are still with me. If you have someone in your life that didn't make it home; I'm sad for you, but tell them I said thank you for me when you pray tonight. Please keep me in your prayers again tonight and pray for my family and someday donor's family, too. Good Night

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