Let the Huh Continue

May 27, 2014 at 6:36 PM 1 comment


This is my daughter who can’t roll over yet. She can’t roll over, but she managed to get from the play mat over to the loveseat…


I’m not sure how she got that far while I was mopping the floor, but it wasn’t by rolling over. She can’t roll over yet, but she managed to take the swab cap off her central line … while it was tucked under her onesie.

She can’t roll over, but she disconnected her feeding tube during naptime. I’m still not sure how she did that without pulling out the whole G tube, because you have to align the extension to disconnect it, a pretty intricate move.

She can’t roll over, but she has lots of skills a normal baby doesn’t. Since she was born, she’s been a mystery. Doctors in the NICU would say, “we’re not sure why she’s doing that.” While one big mystery has been solved–she has a rare syndrome that caused her kidney failure–she’s still full of mystery, or things that make you go “huh.” Like what’s up with the rash on her chest that no one can figure out how to alleviate? And how did she get several feet across the floor when I wasn’t looking?


Entry filed under: Uncategorized.

The Clubhouse News, Mother’s Day Edition So how was YOUR day?

1 Comment Add your own

  • 1. Joyce Donnellan  |  May 27, 2014 at 7:31 PM

    I have a boy (now 21) with a very very rare genetic disorder and we’re always saying “how did he do that” Enjoy everything she’s doing cause it’s her personality shining through 🙂


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