It's been a big week for Ellis! Here are a few of the things we are happy about:
- Ellis can now wear her valve for up to seven hours a day! She is making quick progress and we are so thrilled to hear her voice. We went on a long, fun walk the other day when the weather was nice and for the first time in her little history, I was able to take her into a public place (Starbucks) by myself! When she is wearing her valve she rarely needs suction, and now that she is wearing it so much longer I can walk somewhere with her in the stroller without having to stop every ten to twenty minutes, put on plastic gloves, open a suction catheter, turn on a very loud suction machine, suction her trach, then rinse the tubing with water. This process tends to be disturbing to, well, anyone within a thirty foot radius. I have mastered the art of doing it in the park, though, and keeping out of eyesight of small kids that might freak out as well as doing it in the back of a moving vehicle or even in the children's museum where there are little corners out of the way to duck into. But most public places, especially eating establishments, have up until now been out of the question. This week she was doing so well with the valve that I got brave and our ten minutes in Starbucks was...a little peak into a trach-free future. And it was wonderful. I am still not able to drive her anywhere by myself because she does still need suction sometimes with the valve on and I just never know when. And some days, like today, she doesn't do quite that well with the valve. But baby steps forward are encouraging, and I hope we can make more public appearances as time goes on. Everybody else in Starbucks thought it was just a normal day, but Ellis and I were having a milestone moment!
- Ellis tinkled in the potty five times this week! She knows the signs for "potty," "pee pee," and "poop." She will sign to me when she needs to go or sometimes when she is in the process of going, so we are working on our timing. Someday she will be mad at me for writing this and embarrassing her, but I am such a proud Mama!
- With her valve on this week, Ellis started to say, "Hi!" She will wave and smile and say, "Hi!" to me, Greg, Granny Janny, Granddaddy, the toy sheep, Elmo, cars passing by, squirrels, her own reflection... We know Ellis has been "talking" for a long time, using her signs appropriately. Naming her first word would be a tie between "Mama" and "dog" many, many months ago. But now that she is using her voice more and more, this very clear "Hi!" is the first of what we hope will be many spoken words very soon. I'll try to capture it on film soon so everyone can hear.
We have so many things to be thankful for, this and every week! Thank you for all your prayers! We feel them working every day.
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