Pasta Dinner

Our extended family continues to grow! St. Gregory's Church organized a pasta dinner in Dylan's honor on Thursday, March 19th. There was a magnificant turnout for our little man. The support for our family is so great and comforting. Parents and friends of Evan came from Young Beginnings, parishoners of St. Gregory's, family and friends who were at the first benefit, Dr. Ward and his staff, and of course strangers came to offer stories and well-wishes. There were many raffles, and Papi was the proud winner of the Cardinal's football autographed by Kurt Warner.

Although Dylan was battling a cold, he was at the dinner and seemed to enjoy all the attention. It was funny to hear that the highlight of some attendees' night was finding out that Dylan was there.

Due to the many efforts of the fundraising committee, things have begun to snowball for Dylan. We will be attending a Sesame Street Live show on April 17th and there will also be a New Britain Rockcats game in Dylan's honor. Please keep reading the blog for the date of the game as Dylan will be throwing the first pitch!!!!!!

Thank you to all who attended and worked to make the dinner such a success! I am constantly worried that someone's efforts have gone unacknowledged, but please know that we appreciate all that has been done for our family, especially all the prayers that have been offered.

Double Listing

Dylan is officially listed for transplant at Yale now. He is "double listed" to increase his chances of receiving an organ. Many people in need of a transplant do this to lessen the time spent on the waiting list. Yale and Mount Sinai are in different regions, therefore the pool of potential donors is increased.

Dylan's Broviac line (central IV line) has been removed and we are not going to have it put back in. We are now focusing on trying to bulk him up. We are putting as much food as he can tolerate into his feeding tube at night, adding as much cereal to the nights feeds as we can without clogging the pump, and increasing his MCT oil. He also has been started on Atarax, an anti-itch medication, with the hopes that this will make him more comfortable and he will spend less energy trying to scratch himself. He has only been taking the Atarax since Tuesday, but it seems to be working.

Dave and I were discussing the possibility of him donating a portion of his liver in front of Evan last night. We showed Evan where his liver is and told him that Dylan needs a new liver. Evan's first question was, "How did Dylan's liver get broken?" It's likely that Evan will wind up going into the medical field in some capacity.