Tuesday, January 29, 2013

Sweet sleep

Enjoy a few cute pictures of a sleeping princess!

Monday, January 21, 2013

A record

I do believe this may be a record for the longest time without posting.  It's not that there hasn't been much going on-ha!  Life just gets so busy sometimes, and my fragile self can only handle so much. So, what's been going on...?

Waverly had a quick visit to the ER on January 2nd. She spiked another high fever in the wee hours of that morning, followed by struggling to breath and terrible seizures, so we took her in again via ambulance. I was to return to work that morning, and we think she was just throwing a fit about that, because by the morning, her temp was back to normal, and she seemed fine, so they let her go. There was a little question about her chest x-ray, but given the fact that she wasn't showing many symptoms, they let her go.

Since then, she's been mostly ok. She's still got respiratory junk that seems to come and go, so we are continuing to be very proactive in doing breathing treatments consisting of chest PT with the "shaky vest" (as we call it), Pulmicort/Albuterol/saline nebulizer treatments, and the cough assist machine. Every few days she'll run a temperature for a day or two, then clear it. She's cutting 8 teeth right now (all 4 molars and all 4 canine), so that could be part of it. Some days she seems fine, others she's super fussy.

Her seizures are mostly under control, although some days we do see some sneak through (and noticed a new type just the other day). She's still on the ketogenic diet, but still not at full strength since we don't like to increase when she's not healthy. So she's currently at a ratio of 2.5:1. We hope to increase her to 3:1 soon.

I will post pictures (from my phone) very soon, so check back.  I've got some very cute ones!