Its been a while since we have updated here but things are pretty much the same. Medically, Dewie is stable, meaning her lungs are clear and her breathing is great, her diet is good and she has even gained some weight! Her skin condition is good and her emotional condition is very good! So it sounds ironic but it is accurate to say Dewie is healthy!
Our biggest ongoing challenge is communication. We still use the plexiglass "alphabet board" and even though we have experimented with alternatives, the board is still the best for us - especially since we have gotten so used to using it. Even so, the board is slow and tedious and requires lots of energy and patience from both parties - so Dewie's expression is limited by that but it feels good when we succeed.
Another important part of our lives is to do as much as we can for Dewie to express herself, interact with her friends and family and stay connected to the people in her life. That's the main purpose of this blog. Several of you are planning to visit in the next few months and we are excited to see you. And we still go out to movies and shopping and to performances often.
So I'm happy to post a good report. I'll finish with a story.
In January I was in Minneapolis for training for a few days and Dewie was scheduled for a haircut while I was gone. One evening in Minneapolis I got a call from Mabel who told me Dewie had asked Melanie (her stylist) what she could do to help her with her lifelong complaint about having thin hair. Dewie wanted to know if she shaved her head (!), would it grow back thicker? I said, "Mabel, please tell me Dewie didn't shave her head!" Mabel informed me that, in fact Dewie had done just that!!! In a panic, I called Sarah to confirm and she told me that her Mom was home watching TV with a scarf wrapped around her bald head!!! I asked sarah to email me a photo of Dewie and she did. I opened the email and saw Dewie grinning at me from a photo captioned, "Gotya". The photo is above.
So when I got home, Dewie told me she wanted to dye her hair red. I was so happy that she HAD any hair to dye, I told her that would be fine with me. So now Dewie is a redhead and she is beautiful. And Mabel is still employed but she is on probation and I'm sure she will be more careful in the future about letting Dewie talk her into things.
Dewie, Love the red hair! Love you!
ReplyDeleteSO happy to hear that Dewie is doing so well! Dad says you are both thinking of coming to Coronado. I hope you can meet the great-grands. Katy (18 months) sleeps under the quilt that Missy made for me every night. So I think of you both daily and send good wishes. Much love- Betsy
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