Merry Christmas

I thought pictures would be a bit easier once Evie could stand on her own, but now she runs away giggling! We had to corral her wih the rocking horse! Love my girls. Merry Christmas, everyone! And just as a flashback, here's the girls last Christmas: And our first Christmas with Evie: Actually, here's our …

Advertisement

1 in 6

There’s a part of CHARGE that we, as a community, don’t really like to think about. Unfortunately, we’re forced to look it square in the face a little too frequently.  See, CHARGE syndrome has a fairly high mortality rate before age five. 15-20% actually. That’s around 1 in 5 or 6.  Can you imagine that? …

A Few Videos

Evie is doing really well. Still on O2 at night and a bit junkier during the day, but overall really great.  Here's a few videos of Miss Evie. If any of you remember The Big Comfy Couch, it's on Amazon Prime and the girls love it. Evie especially likes doing the clock stretch. Evie also …

Home!

Home and completely off supplemental oxygen! I'm SHOCKED at how quickly she's recovered! Thank you for your prayers!

Perking Up

Sorry for the lack of updates. Evie claimed the iPad all of yesterday. She was admitted yesterday, but started feeling better by late afternoon. We're weaning down on the O2 now and she's perked up quite a bit. Cultures came back showing rhinovirus and parainfluenza 1 (again), but we're thinking the parainfluenza is just residual …

ER Run

I had all these plans to write a post this morning about how well Evie was doing since her last surgery, but she must have known and felt the need to throw a curveball. Last night when we put her to bed she suddenly needed a full liter of o2 and needed a lot of …