4/18/18 - Grump-asaurus

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I was absolutely ADORABLE in my dinosaur onesie today; if I do say so myself! I'm telling ya'll, I look great in Blue. I like the bright colors. They catch my eye when I look around my bed. I think I'll also like dinosaurs someday, too. They are neat. Well, apparently I was a dinosaur today...a "Grump-asaurus". Okay, I know that's a little funny. Ha, Ha! But, my nurse friends and parents called me that today because I was just a little testy; if you will. I just have been having to adjust to less of the harder medicines and that comes with withdraws of sorts. So, sometimes I just get fussy and I'm a stubborn little German boy. When I'm mad, I'm mad...and there is nothing you can do to change my mind. Well, sometimes a good minute of butt  or back patting will calm me down, but then again, I am still a baby. If not, I get extra medicines to calm me down and keep my heart rate at a good calm level. I just can't handle much stress. Too hard on my heart. 

I am happy to be dressed up every day now. Sometimes I get a little hot and will lay spread eagle on my bed with my belly hanging out. The people walking past my bed will giggle. I don't mind. I don't have any pride. I'm a baby. I like to lounge. 

Mom brought in those Boppy pillows that we talked to my Therapy ladies about using to sit me up in my bed for longer periods of time; somewhat on my own. I'm excited to try that out. We aren't quite sure how to manipulate my ventilator tubing to make it work and keep me safe just yet, but the ladies are figuring that out for me. They are so smart. I borrowed the Boppy pillows from my Auntie's sister, Kim. She gave me all kinds of clothes and baby things to use while I'm growing up. I'm so thankful to have everything I need and great family. 

The Sauk Prairie Eagle and the Wisconsin Dells Events will have an article in the paper tomorrow about my journey thru this heart transplant ordeal. I think a couple things are a little off factually in the article, but I'm very thankful irregardless that Autumn was so kind and thoughtful to write about me. She did a wonderful job. It's so important to me that I share my story. We need help, my family and I, thru this very difficult time. I know my Mom and Dad wish that they had a day-to-day on someone's life (that is similar to mine) to help them stay strong right now. There are many great programs that we have learned about, but the little things (like what happens in your head on a bad day) are things that we can't remember to bring up when someone reaches out to share advice. Living thru each day and the details of what your emotions do is something we haven't been able to read about or hear from other families that we talk to because, unless you're in the moment, Its hard to remember to ask people about certain things. So, for me and for my family, writing to you every day helps so much. We read back thru my days together sometimes, just to get thru similar days. We hope that my blog helps a family like ours some day.

Thank you to everyone who has followed my story, prayed for me and donated toward my medical expenses. You could never understand how much it means to us that you took time out of your day to make my life a little better and my family and I thank you for that whole-heartedly. HUGS! 

 

 Thank you for keeping me in your thoughts and prayers. I look a little under the weather today, but I'm trying so hard to stay strong until my heart gift comes. Hope it is very soon. 

Thank you for keeping me in your thoughts and prayers. I look a little under the weather today, but I'm trying so hard to stay strong until my heart gift comes. Hope it is very soon. 

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