4/16/18 - The Ropes


I'm having a good day today; for the most part. I have one of my favorite girlfriends with me all day. She's got me dressed up in a giraffe outfit. I look very handsome. This onesie is a little big because I borrowed it from my cousin Trip. I haven't gotten to meet him yet, but I know some day we will be great buds. He's just a tad older than me, so his mom and dad let me have his clothes to borrow while I'm growing. I like to wear clothes. Mom went thru the clothes I have at home from our family and friends and brought in some she thought we might be able to get on around my tubes and cords. The snap up ones are the easiest. I look really good in blue. I like blue. I think my blue puppy blanket is from Trip or my cousin Ford, but I can't remember? I like it, too. It's so soft and I like to look at the puppy. I will have puppies at home when I get there. Hopefully, someday I'll be healthy enough to be around the animals on the farm. Mom and Dad hope that someday when I'm stronger and have my new heart, I'll be able to go hunting, drive tractors, feed our animals, work on my own truck when I'm older and just learn to love our land; our life. Country life. We have a beautiful home. Mom and Dad show me pictures all the time. I can't wait to start my life soon.


Anyhow, I was able to get some time in with PT today. The girls sat me up and I did really well. I like sitting. It's so relaxing and feels good...I fell asleep; again. Then, since I was so relaxed, they laid me onto my tummy for a while. It felt good. If I'm in a good mood, I stay on my tummy for a long while. I like to tuck my arms up close to my side by my chest and then stretch my legs out behind me. Sometimes I kick them up for fun. It's so nice to be on my tummy. They lay me different directions on my bed and I like getting a new view. I laid there a while and Mom was talking to me...I was faking sleeping and peeking at her with one eye. I do that a lot; peek. I like to spy on everyone. Really, I'm just so relaxed that I can't be bothered to open my eyes all the way. I'd rather snooze. I did open my eyes and visit with her a while though. I like her most days. She loves me so much. She puts her head down at my level and turns her head so we see eye to eye. I wonder what she thinks. She talks to me a lot, so does Dad and everyone else, but I don't really know what they think about. Adults are strange. Today was much better for my family and I. I had a good day. This journey is such an emotional roller coaster (that's what my family says). We are starting to learn the ropes at this hospital now, though. Day by day, hour by hour, minute by minute. I'm really a work in progress, for lack of better words. That's kind of what the great team of doctors says to help explain everything with the changes. They are intelligent, knowledgeable people and hearts are their specialties...so, we just have to trust that they know what's best for me. This is where I belong right now and as hard of a pill that that is to swallow most days, staying here in the care of the CHW teams is how I live another day. Just look how far I have come! It's so easy to forget that I have been much much worse than I am today; I've died. So, today we tried to just be very very thankful for every second together. I just have to stay tough and fight until my incredible heart gift comes. Well, no emotional stuff today...talk to you tomorrow! Thank you so much for your thoughts and prayers. Thank you for writing to me, too. I really enjoy that. 

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