8/11/18 - Bugs!

Oh, I was sleepy this morning. I snoozed so hard. I was pretty sweaty when I woke up. Well, when the Respritory Therapist woke me up... He had too. I had to have my breathing treatment. This is how that works. They put a mask on up over my nose and mouth, medicine in the tube bubbles up into mist and I breath it in. It goes into my lungs and helps open them up and break down gunk so I can cough it up. Gross, I know. Necessary though. It works great for me. This RT guy, he knew the right way to help me thru this treatment and sat me up. I didn't even cry. Something about laying down when they put that mask on my face is very scary. I mean, I am always super brave, but I like sitting up better where I can kind of lean into the mask instead. Anyhow, after that, I was in need of a good bath again to clean me up. I was really good for my bath today. After, my grilfriend gave us a warmed balanket to put over me to dry. It was nice. Mom and Dad thought I was so adorable snuggled in it while they got my clothes. Then, I fell asleep in my Boppy. 

After my bath, before I dozed off, Mom and Dad put silly bugs on my wrists and toes. Thank you for the bugs Ellen! They jingle when I move them and it made me smile. I also enjoyed chewing on the bugs on my wrist (don't worry, Dad sanitized them before we put them on). I fell asleep with a bug head in my mouth until my arm fell down. Ha, ha! I eat everything nowadays...well, not actually...I chew and drool on everything I can. These teeth are coming soon! We can't see them yet, but they are there. I'm not sure I'll like teeth? Teeth are weird! Bones grow out of your skin and in your mouth?! Eww. That sounds bad. Mom and Dad say it's not so bad. You need teeth to eat. I need to eat so I grow big and strong. I feel stronger every day now. I've been coming down on medicines and been a little extra sleepy as a result, but when I am awake, we play pretty hard. I love sitting up, as you know. So, today I sat up and played with this block toy that has lots of stuff on it (therapy brought it in for me). I find it interesting. I like to touch stuff and just kind of check it out tight now. I am only 5 months old...

Good Night. Please continue to pray for my heart clot to dissolve, for my vocal cord repair to go well, for me to learn how to eat normal after it's fixed or at least be able to get an NG tube and that my Cath Lab goes well Tuesday. Lots of exciting days coming up and I want to be strong and healthy for them. Talk tomorrow! -Heath

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“Faces of CHD” college from the Mended Little Hearts National Organization Wisconsin chapter’s picnic at the zoo. My picture is on the left bottom side. I’m wearing my teal stripe shirt 💜

#CHDAwareness

Mended Hearts is a United States-based charity which functions as a support group for individuals suffering from heart disease. It was founded in 1952 by cardiac surgery pioneer Dwight Harken. Dr. Dwight Harken was the first surgeon in history to repeatedly perform successful heart surgery. Dwight Harken asked four post-surgery heart patients to get together to give encouragement and support to each other and prospective patients. It was there that these patients spoke of their "mended hearts". Mended Hearts offers a program for the families of children born with congenital heart defects known as Mended Little Hearts.

Mended Hearts is the largest heart patient peer support network in the world. Mended Hearts partners with 460 hospitals and rehabilitation clinics across the United States. Its 300 chapters and 20,000 volunteers touch the lives of patients throughout North America, assisting patients and caregivers from diagnosis through recovery with social, emotional, and practical support. Mended Hearts is recognized for its role in fostering a positive patient-care experience, and provides services to heart patients through visiting programs, educational forums, and support group meetings.

More about Mended Hearts and Mended Little Hearts: https://mendedhearts.org/about-mended-little-hearts/

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