Today is the last day that Namine has to wear arm restraints! Yay!

Nothing really much to report from Namine’s trach/vent clinic visit. Last time, they found that she had an infection in her right ear. That’s gone now. We should find out soon if we can get her decannulated this summer. Speaking of, we do know now that it will only be a 2-day stay in the hospital. The first day will be a bronchoscopy, plus putting a cap over her trach to see how she does while awake. (The cap is similar in nature to the Passe Muir speaking valve, except that it will block air from going in or out of the trach.) If that goes well, that night Namine will undergo a capped sleep study. They’ll keep a close eye on her stats, and if she does well overnight, the next day they’ll take the trach out.

After coming home from my aunt’s over Memorial Day weekend, we’d lost Namine’s Passe Muir. Jessica found it today, and Namine is loving it. She won’t stop talking! (Not that that’s a bad thing – we love hearing her talk!)

And since she’s more vocal now that her palate is fixed and healed, we’re teaching her more words. She is still having some trouble with hard consonants, but she can do lots of the softer ones. It’s interesting, because we’ve used the word “say” when talking about signing. For example, if we tell her to say thank you, Namine would do the sign for “thank you” in ASL. Now that we’re encouraging speaking, we take a page from her therapist’s book and tell her to “use your words.”

So anyway, we were leaving the hospital yesterday, and we got to the elevator and I pushed the button. It dinged and the door opened, and the elevator said, “Level two, going down.” Namine responded by exclaiming, “Own!”

And for whatever reason, she loves cars. It’s definitely not my influence. But every time she sees a car, she points at it and tells me “Arr!” Maybe she’s really a pirate. (Hear that, Uncle Matt? You better come back home and teach your little niece about cars and pirates!)

  • it’ll be so good to get rid of that trac!

  • Leah, Mike & Alyssa

    That’s wonderful to hear things are going in the rige directection!!

  • Sounds like good news again. It will be so weird not having the trach, suction, or O2 anymore. Zowie! Thanks for posting.