First, thank you for continuing to keep Missy and all of us in your thoughts as we march ahead. It’s one of those things where as time goes on the impact and severity lessens, or so it appears. Everyday life takes over. For us, this is now our life. For Missy, her new life is not the same and she is working harder for the smallest things that we surely don’t often think twice about. I want her to shoot up out of her chair and walk across the room. I want her to yell a sentence at me. I want to pick her up to go to out shopping without a day of planning, where she can just walk to and sit in the car. Sometimes I daydream when we did not have to worry about health insurance coverage, or planning her schedule, or the best wheelchair, or what medical advances and research will they be working on next, or what the future holds, how much she will progress, or hardest of all, why this happen. 

That brief realness said, Missy is really making progress. Friends who see her every now and then continue to be impressed and wowed when visiting. They even say she is beginning to look like Missy again. Her therapists remain optimistic! PT indicates she will not need a motorized chair soon. That is huge. She has a new chair she is working on operating doing a kick ass job. Missy’s head control is so much better. Missy has now been able to stand on her own at the parallel bars and is working with the therapists help to climb stairs. She uses an “Alter G” treadmill to facilitate walking movements which helps with the repetition to retrain the brain. Missy has started outpatient Speech therapy nearby and the SLP is wonderful. In the last few months, Missy has continued verbalizing more and is expressing a real desire to the SLP and us that she wants to talk! I often hear words coming out that may not sound like our words, but I understand them. The other day I recognized a sentence! One of the SLP’s in communication has an app she devised and Missy uses to communicate (although slower than the board since she is getting used to it). She is working on texting!  In OT, she is now ready to incorporate ADL’s (adult daily living) activities into her therapy when before they did not believe she was yet able. These are everyday tasks we do to take care of ourselves. Aside from OT, PT and Speech, Missy takes part in Feldenkrais, Music Therapy, and Biofeedback regularly.

We often remind Missy how far she’s come and that's important for her (and us too). It is definitely encouraging. I think back to the early days and Missy is worlds away from them. I look forward to more progress, however slow. Missy is surely determined and I do believe that the hard work and motivation is paying off! Please continue to cheer her on in some way and we do encourage if you were or have been a friend to Missy to keep in touch. Forward ahead!

xx Jessica

 

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