July 1997 – Nicky was a little over 7 months old here and the problems with his mouth are already quite evident. Because he could not swallow his own saliva due to the severe problems with his mouth and throat, he would drool endlessly. So much that I would usually put a bib on him. By now he had completely stopped eating solid foods as he could not swallow them well. As a new mother, I thought this was temporary and due to the wounds he had in his mouth. I was unaware of the issues with the throat contracting and constricting. No Doctor had ever mention that to me, and we were still waiting for the approval from the insurance for Stanford (where the EB Doctors were). Only 3 months later Nicky started vomiting blood during a feeding which prompted the first trip to the ER. He never ate solids again and ended up with a g-tube 2.5 years later. Til this day, solids are an immense challenge. Last night he had a hard time swallowing cottage cheese, and he had a dilatation not long ago. To say his mouth and throat are a disaster… it’s the understatement of the year. Without his g-tube, he would not be alive today.
More of Nicky’s story in the book… Thank you so much for your support!!
Love & Light,