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Saturday, May 19, 2012


I am happy to announce that we finally have Kenan's medications sorted out and he is no longer in a state of constant pain. All Krabbe Kids experience the same milestones of the illness, but the side effects of those symptoms vary from child-to-child. It was maddening to be patient through the process, especially when he couldn't communicate with words what he was feeling, waiting for a clue or clear sign of what was wrong. We are grateful to have that behind us.

In December, I took Kenan to see the specialist for Krabbe, Dr. Maria Escolar, at the Children's Hospital in Pittsburgh. We participated in her research study and in return, now have her staff as part of our medical team. They are an exceptional group of people and available to any concern or question we may have. I am grateful to have them, along with Horizons Hospice and Palliative Care, The Hunter's Hope Foundation, and Dr. Waggoner at Comer's Children's Hospital in our corner.

Kenan has changed a great deal since his diagnosis in October. He lost his ability to smile early on, most of his muscle tone is gone, he can no longer swallow well enough to take food by mouth - fed via g-tube, he lost his vision around his first birthday, and general activity and functions are more taxing for him now. Alternatively, his hearing is still very strong, he is able to connect with his environment, expresses his feeling through eye movements, and every once in a while, a signal will get through and he is able to make his laugh sound, indicating that cognitively he is experiencing the world like any other 15-month old. Those are the best few seconds I could ask for. He is receiving numerous therapies and we do everything we can to make sure his life is as comfortable and full as possible.

Tamsen, 3.5 years, is well. There are families who can't imagine taking care of another child in the midst of this, we can't imagine not. She is such a vital energy and her love is direct and uncomplicated. We talk honestly and openly about Kenan's symptoms as they present. Now that Kenan is comfortable and we are able to move out of crisis mode, there is a lot more cuddling and affection displayed between the two of them. We plan on attending The Hunter’s Hope Symposium as a family this summer, giving Tamsen a broader context for her brother’s struggle. 

Dann and I are also well. The emotional upheavals, of which there are many, are dealt with as they come so that we can be available to each other, our business, Tamsen and Kenan. It is simple, really: KENAN IS ALIVE! We care for him with the same devotion and diligence, sick or healthy, it doesn't matter.

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