Update – October 2nd, 2012 –
Trevor continues to be very comfortable and stable. His sleeping patterns tend to vary from day to day. Sometimes he sleeps a large portion of the day and other times he can be very alert for long periods of time.
Last month, our family traveled to Pittsburgh, PA to see Trevor’s amazing doctor, Dr. Maria Escolar. She evaluated Trevor very thoroughly as part of her “natural history study” for Krabbe disease. Once again she gave Trevor’s caregivers high marks for the outstanding care Trevor receives everyday. We know how well Trevor is cared for but it is always nice to hear Dr. Escolar confirm what we already knew. We would like to thank all of our nurses who help care for and love on Trevor each and everyday.
As far as the disease progression goes the news is not as good. Dr. Escolar has informed us that the disease has been affecting his brain stem for over a year now and we need to be prepared that he could stop breathing or have heart failure at any time. This was very difficult to hear and even more difficult to live with everyday. We have to be prepared that our son’s beautiful life could end at any moment. Of course this is true for any person on this planet so we try to not dwell on the realities of Trevor’s disease progression and put our faith in God that Trevor’s work here on earth is not yet finished.
Trevor is a courageous little boy who Nicole and I could not be more proud of. We love him so much and hope that he will continue to fight this devastating disease.
Steve and Nicole