RMH transformed

I have officially finished transforming our apartment at Ronald McDonald house into a toddler’s dream house. First, I couldn’t handle the anxiety of a baby with a platelet count of 30K to learn how to walk on hardwood floors, so I covered half the apartment in a play mat. Second, I pushed the two double beds apart and dragged one of the mattresses onto the floor, so I could leave Maggie on a soft surface when needed without risking her falling off a bed (if I had to run in the other room to get a new saline flush because she grabbed the first, as an example that happens all the time). Third, I put a pack and play in the bathroom so she wouldn’t have to sit on the floor and play while I showered. And lastly, I distributed our gigantic amount of medical supplies into a logical and easy to access drawer and cabinet network. Maggie is still doing well, although still looks like she is breathing quite heavy a lot of the time. I spent the night on Wednesday awake counting her respiratory rate (which I counted in the 60’s for a few hours, which is a really high number to me). Her team thinks it is still just her being out shape from transplant + Hurlers + her new post-transplant beer (milk?) belly. Otherwise, she is still getting platelets every couple days, IV magnesium nearly daily, Neupogen every other day or so, and IV infusions at home. But every day of the same is a successful day at this point. Day +42 today!

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