Children's Hospital of Boston

We went to Boston Children's today to meet the transplant nurse and drop off some of Dylan's medical records. Jillian said we will have to come back with Dylan for a two-three day transplant consult soon.

Liver Walk results

The Liver Walk was held today. Unfortunately, only Dave and Bobby were able to walk, as it was a rainy day and all three kids had a touch of a cold. Bobby raised over $700.00, bringing our total well over $3,000.00! We are amazed at the support of our family and friends. We know most people have their own charities that they support and are amazed at the amount of support we received. It feels so good to know that we are on this transplant journey with so many people thinking of our little guy.

Liver Walk

We had planned on participating in the Liver Foundation's Liver Walk to be held in Boston on September 28th prior to Dylan's last GI appointment. I began working on our fundraising by updating our family and friends via email regarding the appointment and asking everyone to check out our homepage on the Liver Foundation's website. Donations began pouring in and we reached our goal of raising $500.00 in less than five hours. We decided to double our original goal and aim to raise $1,000.00 for the foundation. Bobby, Dave's brother had previously sent a letter to family and friends in the Boston area letting them know we were participating in the Liver Walk.

Thursday, September 18, 2008

Appointment with GI doctor today. We began discussing Dylan's biggest challenge, his lack of growth. Possibility of the necessity of a liver transplant is first mentioned. Dr. says that Dylan would likely need a liver and kidney transplant at the same time, as the anti-rejection drugs used for the liver transplant would destroy Dylan's kidneys, which already do not function well. Dr. suggests Boston Children's Hospital for the transplant.
We are very surprised because the first we heard of a transplant was shortly after Dylan was born. The doctors then had thought he might need a kidney transplant at some point, but that would not be for years and years to come. His kidneys seemed to be functioning well enough throughout his first year. After the initial shock wore off, we began to feel much better. For the past year we have been hoping that Dylan's organ would begin to function better and that he would grow. We have tried everything from pouring calories into his little body, giving him MCT oil, and giving him nearly a dozen medicines and vitamins a day. His body has not responded like we had hoped, and we feel as though for the past year we have just been treading water. We are looking at the transplant as taking a proactive step in Dylan's care and are hoping for a much higher quality of life for him through a transplant.