Rainbow

Because there's almost nothing in the world that makes me quite as happy as when Evie signs rainbow. Here's a link to see how to sign "rainbow".  Evie learned to sign "colors" first. She also likes to use both hands for a BIG rainbow!     It's such a big rainbow she can't even stay …

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Botox Done

Procedure went well. We should know in the next week or two if it is decreasing her secretions. Followup in 3 months or so. Thank you for the prayers!

Botox

So grateful that Cincinnati was able to squeeze Evie in tomorrow! She'll be getting the Botox injections tomorrow morning at 8:45. And I forgot to share some good news! Evie's stomach looked much better than a year ago. There seemed to be more folds (for expanding with a meal), which means probably a year ago, …

Changing Focus

Well, Evie had her scopes this morning and unfortunately we didn't hear what we wanted. The pulmonologist is very concerned about Evie's aspirating and the damage that it could be doing to her lungs. Since the main suspicion at this point is that she is aspirating her own secretions, we're going to attempt to o …

Swallow Study

We're back in Cincinnati this week for some final tests and scopes before making decisions and plans for the tracheal reconstruction. This morning we had a swallow study since we informed them of Evie's aspirating (what she swallows goes into her lungs instead of her stomach). We were very much not looking forward to the …

Three Years of Happiness

Can you believe it’s been three years already? How did that happen? I still feel like maybe we’re coming up to her 2nd birthday. Maybe. To be honest, Evie’s birthday comes with a lot of emotional baggage. It was a scary scary time and there aren’t a whole lot of good memories with that day. …

Glasses

We've been letting some of Evie's non airway issues slide over the past year as we pushed forward at Cincinnati Children's so now I've been trying to cram in some of those appointments before our next trip.  Unfortunately (though not surprisingly) we discovered that Evie needs glasses. She is nearsighted and also has astigmatism.  I …