Hospital selfie

Admittedly Maggie gets a lot of screen time in the hospital, because she has only so much physical stamina and I have only so much mental stamina to play with blocks all day. And apparently 5 weeks is how long it takes a 16 month old (even one with Hurler syndrome) to learn to work an iphone. Maggie can now bring up the camera from the lock screen, which I’m fairly certain many iphone owners cannot even do. And below is her first selfie showing off her bald head. She had a fine day, but her line repair failed, but failed in a way that a second try was possible, so we are making do with a peripheral IV for another night. It really stresses the nurses out to have four 2-hr long medications due at the same time in a baby with only one small IV. And it really stresses mommy out to know that if she loses that IV, she gets poked for another, and it’s my job to keep it in. So far we’ve kept it in for 36 hours and hopefully we’ll make it another 12. No other big updates today, which is a good thing.



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