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Saturday, July 30, 2011

the tooth brush

Glancing at the clock on the wall I noticed it was already a little past 11:30pm. Where did the time go, I thought to myself. I still had a sink full of dirty dishes to wash. The boys had not been given their evening dose of meds yet and laundry laid piled in a heap at one end of the sofa. I knew the dishes and laundry could wait but Cody and Josiah really needed to be off to bed now and getting them to bed by myself was certainly a 45 minute job at least.

I could hear both Cody and Josiah busily chatting while they worked in their Lego room. Entering the room I immediately noticed the new structure that had kept them both occupied the last several hours. It covered half the table. A complex with several rooms and a second floor with stairs. At the top was a light rail running across the span of the building along one side. I am not at all certain how my boys are managing to reach up to such heights. It is just with in the last several weeks I have noticed these few minor feats they have managed. Unfortunately it seems I am seconds behind when they are actually pushing the limits of strength and miss marveling at the extremes. Josiah anxiously pointed out the boarding deck he had built for the passengers to enter and exit. I was overwhelmed with utter amazement at the the detail they had put into this newest design. Feeling compelled to hurry them off to bed I had promised to spend time the next day letting them show me all the amenities the new complex offered.

I heard my eldest Zach come in the front door as I pushed My Josiah in his desk chair toward the bathroom doorway, his timing was perfect. With Zach's help I could get the boys in bed much faster and spare my back from the extra lifting. Zach came to our aid and immediately began to assist Cody with getting ready for bed. I gave a Zach a few instructions on what I needed him to do for Cody. As Zach lifted Cody back onto the desk chair and steered him toward the sink I watched momentarily. Zach laid Codys tooth brush prepped with tooth paste on the counter next to the sink where Cody had been washing his hands. Not exactly what I asked of him. This I surely thought would be requiring my intervening. To my pure surprise Cody reached over and picked up the Tooth brush and began brushing his teeth himself. I stood feeling over joyed. This had not been a task Cody had done in quite a while by himself. Zach stood back smiling at me then at his brother. They both knew what this meant to me and Zach also knew what this meant to Cody. Cody smiled up at me, telling me he was getting the back teeth too. I watched as his beautiful arm and hand worked together cleaning his dazzling smile. It did not matter to me he how this was happening- only that he was doing now. Such a simple task so many of us would not give a second thought about. My beautiful eighteen year old Cody was moving his arm in away I had not seen in so long. He brushed , he swished, he rinsed. Then smiled the proudest smile telling me "I did it mom, you don't have to do everything". A tear rolled down my cheek as I smiled back. One score for us I thought, Duchenne take that.

I do not know if it is in fact Ataluren (PTC) the experimental drug at work or Cody with some kind of adrenaline flow. I know He did not attempt to use his arms the day before. I know we have days when both boys seem to struggle with lifting a fork to their mouths. What ever is happening I pray it will continue. At the very least I will cling to this new hope. The hope that quite possibly we are stalling Duchennes progression.

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