On our way to Boston

It has been awhile since we updated the site with any new information, so we have a lot to update.

Sam's weight is still hovering right over 9 pounds. His liver enzymes and bilirubin continue to be elevated. Sam's has had several crabby days lately and it seems like he is very uncomfortable some days. We also had a little bought with an ear infection, but that has since cleared up. Sam still has quite a bit of fluid in his ears, and we are already working with the ear, nose, and throat specialist to schedule him to have tubes put in his ears when we get back from Boston. Sam's brother had horrible trouble with ear infections, and our choices for antibiotics are somewhat limited after our first try at an oral antibiotic did not go so well, which is prompting us to go the route of tubes a little sooner than normal.

Sam will be checking into Children’s Hospital Boston on 08/04/08. Deb, Jason, and Sam will be leaving for Boston on Saturday. Although this is good news, we have had quite a bit of disappointing news to go right along with it. We have not been able to convince our insurance or Medicaid to cover his treatments in Boston. This leaves the total cost of both his Inpatient and Outpatient treatments solely on us. The estimated cost for his first trip to Boston is approximately $20,000. Since Medicaid will not be covering any part of the treatment, we also lost our medical assistance travel reimbursement which was another setback. We were fortunate; however, to receive a grant from Winnebago County to help with expenses which will cover our airfare and allow us to stay in a hotel until more permanent lodging arrangements can be made. We can receive a 40% discount on Sam's hospital charges if we pay for the services up front, but even $12,000 is a stretch for us right now. No matter what the cost, we still are positive that this treatment will be a huge benefit for Sam and we will continue to do what we can for him.

Several things have been going on or are in the works to help cover the expenses for Boston and we will never be able to express our gratitude enough to the people who have donated time, money, and other items to help cover the expenses for Sam's care.

Fundraisers were planned at Jason's place of employment. Last Friday and ice cream social was held to raise funds. This Wednesday they will be holding a pancake breakfast as well. These activities have all been planned by a group of associates who took it upon themselves to help us out. So far they have had very good success due to the overwhelming support of the employees of School Specialty. Several members of Jason's family are planning a benefit for September 20th and we will post more information on our website as we get closer to that date. We have also gained some assistance from a local marketing firm who are helping us in getting the word out about Sam in our community in hopes for more local support.