5/24/18 - Milk Farts

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So, today...I was a pooper. I took my left leg and pulled my knee up to my chest, then pushed it down strait and repeated that...pumping my leg. Mom thought it was pretty cute. I was kicking like crazy! Then...poop! That was my trick; kicked it out, LOL! I’m a stinky baby boy, Mom says. All this milk is what’s making me gassy, though. I do like getting a lot of milk. I get 70ml every three hours, as you know. It gives me a full belly! I think I’m doing okay with that much, so far? I have a few pukes every day; just small ones. Hopefully that will stop. When I get worked up or have the hiccups (I seem to get them quite a bit lately), then I tend to puke. Otherwise, I’m doing well with all that. 

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Still hearing more talk about extubating me someday soon, here (that means they want to take out the tube in my throat out). It’s very scary to think about (I talked about it in more detail in another blog post if you want to read about that stuff more). Basically, I’ve never been without it, don’t know if I can do it. I think I can breathe well on my own, but I’m not sure about when I’m mad. I have had the ventilator to help my heart mostly. To take some of the stress away. Also, I’ll likely drop down on the heart transplant list if this happens. That is scary. Although, I did find out that there is a way to apply for an exception and try to keep my 1A status. So, I’ll hope for that. It’s hard...”the list” is so complex. 

This is as far as they could get me to go, onto my right side, and still be comfortable. I haven’t made it clear why I’m not liking my right side lately. I will soon, though. Just getting used to the nasal tube still. I did, however do well for therapy today! No pictures of me sitting up today because my a Mom got to sit me up! She put her hand behind my head and one under my bootay..ha ha...and then h lied me up to a sitting position. Then, with her helping me sit a little and also protecting my head (my girlfriend was manning the ventilator tube). I turned my head back and forth, following the OT lady around. It was so fun! 

Please keep praying for me 😊❤️ Nighty Nite!

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