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Emma playing ‘wonder ball’ at the pool with her friends.

A year ago tomorrow, when I began this blog, we had just returned from Costa Rica where we took Emma for her first stem cell treatment. We were filled with anticipation, fear and excitement, alternating between fantasies of miraculous recovery and tremendous uncertainty and worry. Like most things in life, we could not predict what the future would hold. We could not know that a year later we would be where we are now, that Emma would be where she now is.

So a quick review… Emma has hit so many milestones in the past year it is difficult to say one is more significant than another. My immediate thought was the most important thing in the past year has been that Emma is learning to read and write (more on that later) and while that is certainly an incredible achievement, when I consider that she is also completely toilet trained, even during the night, that too seems equally significant. I know of families with autistic children – now in their teens – who wear a diaper to bed, with no end in sight. The endless changing of sheets each morning is something I am grateful not to be confronted with. In addition, Emma use to wake up in the middle of the night, often more than once, leaving all of us exhausted to the point of hallucinating. Until we had Emma I had never known exhaustion such as that – to be woken and kept up for hours at a time, only to then face a full day of work where you must function, make decisions and not fall asleep during meetings, is nothing short of surreal. Emma rarely wakes us these days, though she did keep her brother up last night. Poor Nic was showing all the signs of exhaustion we have come to know so well. We will speak with Emma, (which is another milestone) and remind her that she cannot do this.

Emma is speaking in longer, more coherent and increasingly complex sentences. She is expressing herself in more sophisticated ways and is showing genuine empathy for others. She is also initiating more. She has formed friendships with specific children at her school, requests to see her cousins, is clearly upset when told they are not available to come over. Emma seeks out our company, often requesting that one of us join her in her room to watch a movie with her on her computer or play specific games with her. While staying in Aspen with my mother, Emma approached her Granma and said, “Granma can’t snap her fingers. Granma hurt.” She then gently patted my mother’s arthritic fingers.

“No my fingers can’t do that any more,” my mother said, showing Emma her arthritic fingers.

Emma stared at them for a moment and then reached over and tried to snap them. We heard my mother’s knuckles crack as Emma did her best to assist in helping my mother snap her fingers.

“Oh no!” I said, looking over at my mother with concern. ”Are you alright?”

My mother was laughing so hard she couldn’t speak and simply nodded her head. Emma looked on with a grin, trying over and over again to snap her Granma’s fingers. It was a wonderful moment between my mother, whose knuckles kept cracking, much to Emma’s delight and Emma.

The next morning my mother entered the kitchen and said, “Good morning Emmy!”

To which Emma responded, “Good morning Grammy!”

To date we have taken Emma to Central America for stem cell treatments three times now. We have not decided whether we will return for a fourth treatment in the next few months until we have some blood work done to measure her cytokines.

Yesterday as I worked with Emma on her literacy program I handed Emma an index card which said, “the man”. I had laid out a toy plane, a truck, a man and a kid on the table. I handed Emma the index card and said, “Give me this one.”

Without hesitation Emma picked up the toy man and handed him to me. These are the moments, moments I could not allow myself to wish for a year ago, that take my breath away.

Emma is progressing beyond my wildest dreams.