11/19/18 - Another Check Up Day

I had a really, really long day! I went to CHW for my general checkup and a half dozen other appointments all today. I also had a developmental check up. So, when we got there, I went to labs first to get my blood drawn. The lady I like was there today, we I was able to get all my blood work done in just one poke, because she is the bomb! Sometimes, when I get labs draws done, the lab tech will poke me a dozen times to try to get blood. It’s horrible and we hate it. Got lucky today! After labs, we went and had an Echocardiogram done. All the pictures looked pretty good, the doctors said. That made us really happy. Then, we taked to Pharamcy about my medicines. Mom has been really, really frustrated with the home medicine ordeal. We order medicine for a month at a time (that’s how they do it) and have been short on my medicines the first two months since I’ve been home. Then, end up having to scramble when we don’t have enough medicine. It’s been so frustrating. I always ge the exact prescribed amount, but by the end of the bottle, the medicines get so low and goopy. The pharmacy doesn’t give you any extra, at all, so you are expected to use the gooby yuck? No way. So mom switched from the CHW Skywalk Pharmacy to the Walgreens in our local town. It’s been good so far and we definitely have enough meds now and if we do run short, we can get medicine quickly. Then, the CHW pharmacy also canceled my Mycophelolate medicine (one of my lifetime anti-rejection medicines)? I think we have everything worked out now, thank goodness! Anyhow, my general check up went good and the team was happy with me. I’m starting to eat better and we increased my milk flow thru my J tube, so I’ve grow/gained weight. I went to my developmental check up after, and the therapy ladies all visited with me on the floor (on a mat). They wanted to see, about, where I would be on their developmental scale. I had to pick up and hold things, play, do tummy time, sit, look when they called my name and all kinds of things. I didn’t “preform” for them at all like I would at home. Not only was I tired from getting up at 4am to go to my appointments (we live far away from CHW), but the appointment days always wear me out. I was tired and wanted to nap…so I did. They gave me red marks for that, but I’m just a baby. We didn’t learn much more than we already know…I need to work on my core strength, mostly. I finally went home after the long day and slept so hard. -Heath

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