4/8/19 - 4/15/19 - Having A Ball

It was quite the week! Two Milwaukee trips was A LOT for me, but we got it done. Mind you, that’s ten hours of driving in the car for two appointments! Monday, we went down to my Children’s hospital for my general check up with the team. I had labs drawn and an Echocardiogram on my heart, as usual. It all came back clean and my numbers were great. I look and feel good. I gained about a pound and am now 2’ 6” tall! It’s pretty kool! My family, and me too, just can’t wait until I can finally walk. Anyhow, during my appointment, my Mom pointed out something that has been bothering her a little on my neck…I had ECMO cannulas in my neck on the right side when I was on ECMO the first time, the day I was born…anyhow, when they removed the sewn in cannulas, they never reconnected the vein (or artery?) that was used because it was damaged. That is somewhat normal procedure for ECMO recovery and most times the veins just grow new and find new paths to feed blood to the areas needed there (like your brain!). Well, my veins have regrown and are doing their thing and feeding blood to my head, but they are HUGE! Like, really pronounced on my neck (especially when I cry). When I cry, they pop right out in a big bulge. So, Mom asked the team about this and they had a PA for my heart surgeon come in and look at me and he showed video of me to him. He asked me to come in for an extra appointment on Wednesday to check into it better. Ugh…another scary thing to worry about we thought…right?! So, anyways, Wednesday we got to my hospital again and I went strait to Radiology. They did a thorough ultrasound of the area and sent me upstairs to the Herma Heart institute to meet with my heart surgeon so he could physically examine me, too. He did and he felt concerned; thinking that possibly there is some herniated lung tissue that is pushing the area out when I’m upset and making the veins pop up? So, he sent me back down to Radiology for something called a Fluoroscopy (an imaging technique that uses X-rays to obtain real-time moving images of the interior of an object…or in my case, my lung). The pictures came back and it didn’t appear that there is a hernia, so that was good, but my doctor still has some concerns about the area. So, long story short, I think the Transplant team is discussing bumping up my 6 month Cath Lab (the big heart surgery checkup ordeal) to a sooner date than our previously planned July date. Waiting for more information on that…Wheew…

Other than hospital stuff, I started some new thing this week. I now yell, at the top of my lungs, when I’m hungry. Mom says I am demanding. I say I am clear in what I want. Ha, ha. I also have really went to talking. I feel like I need to speak my mind about everything. Mad, Happy, Sad, Excited…all of it calls for some sort of vocalization of my feelings. I’m learning all kinds of new sounds in the mean while. Also, this week I have become more and more active. I still don’t crawl but I an get around pretty quickly but butt lifting and rolling. I also stand up in my walker chair. Just for a few seconds at a time, but I am definitely practicing and getting some leg strength. I am doing some tummy time every day still. Not getting up on my arms at all yet. I just don’t have any interest. I do roll all over though. My arms are strong, but I don’t like tummy time in general so I don’t try. Mom still makes me do it though. I am sitting better and better all the time. my core strength has improved so much! Mom usually puts “crash” pillows on my sides just in case I decide to be lazy. This week, too, I learned how to hold my little inside doggy, Lily’s, tennis ball and tease her. So now, I take her ball, or she gives it to me, and i hid it or hold it until she barks at me. It’s really really fun and I laugh so hard! I love animals. -Heath

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