Patience, Polka Dots, Pigtails

 We had some disappointing news this week. We were all set to go for Ellis's capping trials in a couple of weeks, but it has become apparent to us lately that she is simply not ready. She's still doing great during the day with her breathing, even wearing her cap up to 12 hours at a time. But the few times recently she has fallen asleep with it on let us know that she is still struggling at night when everything relaxes. After speaking to her doctor we all agreed that putting her through a 48 hour capping trial was unnecessary right now. He recommended postponing for six months to let her get bigger and stronger and then trying again. We can always consider more surgery to open up breathing room, but none of us want to rush into that right now. We had gotten our hopes up, I suppose, that we were coming to the end of living with a trach. We are still on track, just delayed. So, now we wait.
This verse has been in my mind this week.
"...we glory in tribulations also: knowing that tribulation worketh patience; and patience, experience; and experience, hope." (Romans 5:3-4)  I've been thinking this week about how those words are in exactly the right order.

In the spirit of keeping things positive around here, let's look at some pictures.

Ellis has really enjoyed playing with her removable wall decals, including these colored dots. She very carefully considers each one, usually telling us its color first, then places it purposefully on the wall. I think she has a better grasp of composition at two than I did when I entered architecture school.

Seriously. Who do I call at MoMA?

In another happy moment this week, Ellis was agreeable to trying pigtails, which tickled me to no end. 

It's all I can do not to smother her in kisses every second of every day.

As always, we appreciate your prayers for Ellis's strength and progress and of course, our patience. Thank you!