7/10/18 - Working Things Out


Two boppy pillows are so much better than just one! I loved sitting up and snoozing like this today. It was very cooshy and cozy. Just what I needed to help me calm down and rest. I am struggling a little with the medicine changes again today. It’s hard for me to settle down once I get worked up and I don’t know why? We know why but I don’t know “why”...if you know what I mean? It’s hard for me to sleep soundly right now, so I was so thankful to get in a good nap this afternoon. My girlfriend and Mommy sat with me until I dozed. Mom never left me, stroking my head softly. We needed each other today. She struggles with all this and having to leave me every day to go home. She tells Dad, but I’ll never know how she feels. I love our time together though. We are getting thru this one day at a time. It’s hard. I am almost five months old already. I’ve been in the hospital my entire life...138 days. We are thankful I’m alive and we are still a whole family, though. I’m going to beat this and go home one day. We will get thru. Im a fighter...and a snoozer...ha, ha! 


I had a short happy moment this afternoon, waking up for just a few minutes to turn to a new position. I was smiling because of medicine again, but I was smiling and that is all that mattered in the moment. I reached out to grab my mobile today and was batting at the little critters, just smiling at how good I was doing. It made Mom smile, too. She sent videos to Dad and he told me I was doing good and to keep it up. So I did. I played. I am just learning this “play” thing, but it’s fun. So, here are some happy pictures from my emotional roller coaster day...we want to remember the smiles, don’t we? 

The adjustments made to my Berlin Heart really helped my edema; my face and body weren’t as swollen looking today. I felt better too. Getting thru the withdrawals and delirium as best I can. I think a few days and I’ll feel more clear minded. We hope! So, all-in-all, today was better than yesterday. That’s what we want...just keeping stronger. Keep fighting. Kind of just rambled tonight for the blog, but it was a weird day, so it’s called for. I’ll talk to you tomorrow. Please keep me in your thoughts and pray I have a peaceful night. -Heath

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