Bristol Press articles

Dylan has been getting some media attention! The first article ran in the Bristol Press on Friday, 12/12/08 and the second ran today, 12/22/08.

http://www.bristolpress.com/articles/2008/12/11/news/doc4941d05809511968057650.txt

http://www.bristolpress.com/articles/2008/12/22/news/doc494eff054b476568152211.txt

Pictures of the little man

News Channel 8

We interviewed today with Jocelyn Maminta from News Channel 8. Jocelyn is doing a piece on Alagille Syndrome and Dylan. Dylan's GI doctor was interviewed, as well as Dave and I. Jocelyn is going to give us a day's notice before the story airs. She did tell us it would be after the holidays. Jocelyn does the 5:00 news. We hope the story will raise awareness about Alagille Syndrome, as I suspect there are more people affected by the disorder than statistics actually reveal, and that many people are misdiagnosed with other illnesses.

We did have an opportunity to talk to Dylan's GI doctor to get her opinions on the Mount Sinai tranplant team's recommendations. Unfortunately, we found out that Dylan's kidneys are functioning more poorly than we thought when we were in New York. We have now been told that it is highly probable that Dylan's kidneys would completely shut down after a liver transplant. Dylan's GI doctor does not want Dylan to have to begin dialysis, as each procedure that he undergoes has potential dangers and is taxing on his little body. All of Dylan's specialists in CT and New York are working out a treatment plan for him. We do not know yet if he will now need a kidney transplant and then a liver transplant, or if both organs will be transplanted simultaneously. We're scared, because Dylan is so complicated, and there just doesn't seem to be an easy treatment answer or treatment protocol for him. My feeling is that their recommendation will be to do a kidney transplant within six months to maintain his health, and then work on treating his liver issues with a liver transplant.

Please pray for a successful treatment plan and outcome for our little pickle.

Mount Sinai consultation

We met the transplant team at Mount Sinai today and liked each doctor we met. The lead liver doctor was just back from vacation that day so the team had not had a chance to discuss Dylan prior to our getting there. They were bouncing ideas off of each other while we were there. One idea they have is having Dylan undergo a liver transplant first, allowing him some time to grow, and then doing a kidney transplant thereafter. The team likes this idea because then the anti-rejection drugs that will be given (and are very damaging to kidneys) will damage his "old kidneys". He would then undergo a kidney transplant at some point in the future when he is bigger and reaches the desired 20 lbs. weight that is ideal for transplant.

Dylan will have to undergo a cardiac catheterization soon to make sure his heart is strong enough to withstand the transplant(s). The team at Mount Sinai plans to talk to Dylan's specialists in Connecticut to make sure this is the best course for him. We have a follow up at Mount Sinai scheduled for January 16th where treatment plans will be finalized.

Dylan's benefit!

What a heart-warming surprise!!!!! We were told there would be a benefit in Dylan's honor one week before the benefit. There were probably 400 people that came to Dylan's fundraiser. Everyone we knew was there, as well as people that we didn't know, that just wanted to come and show their love and support for our little man. One boy, CJ, came to the benefit with his mom and got to personally meet Dylan. CJ heard Dylan's story, and came with a box full of his own money that he wanted Dylan to have. Being surrounded by all of our friends and family, as well as people we don't know, but who have a spot in their hearts for Dylan, has lifted our spirits in so many ways.

Dylan and Gracie both stayed at the benefit until 10:30 p.m., and Evan stayed with us until 11:30!

Donations continue to roll in. The benefit so far has raised nearly $31,000.00! The support for Dylan and our family is absolutely amazing, warms our hearts, lifts away a huge financial strain, and also helps us to know there are so many people on this journey with us.

Transfer of care

We are disappointed by Children's Hospital Boston in that they had us go up there for two days in October when their lead liver specialist was not available to meet with us. After much collaboration between the CT doctors and the Boston doctors, the Boston doctors are still reluctant to list Dylan for a transplant because of his size. After researching our insurance coverage, we have found out that our coverage is much better at Mount Sinai Medical Center in New York City. We have transferred Dylan's care to Mount Sinai and have a one-day consult scheduled for Monday, December 15th.