Towards the end of April the whole family flew to Boston for Aidyn’s CAIR appointment. It was an extra special trip because it would be a turning point in Aidyn's care. It was the first time all four of us have traveled to Boston together. We stayed six nights this visit, five of which was with the wonderful family in Brookline. They always make us feel at home.
|Flying to Boston|
We reminded Dr. Puder how grateful we were to have him in our lives. He remembered what we told him when we first contacted him over two years ago by recalling our story. How Aidyn’s initial doctors told us he most likely wouldn’t live past the first surgeries and if he did, that his quality of life would be poor. How transplant was the only option for survival. We were told several times we could remove life support and let Aidyn pass away in our arms. And when Aidyn fought hard and was nearing discharge, we were encouraged to put Aidyn in a hospice home for terminally ill children. Instead, after discovering Omegaven, we took Aidyn home and boarded a commercial flight to Boston five days later. And the rest is history. We were probably the most troublesome parents for those doctors where he was born; I hope they saw that we were the best patient advocates they had ever come across. And one day, hopefully soon, I will send an update letter to that hospital, directed to the NICU. They must know that each patient deserves any and all treatments that are available out there before giving up.
At the time of clinic in April, Aidyn weighed 10.2 kg, or 22.4 lbs. But before clinic, Dr. Puder removed the CVL and granulation tissue in surgery.
|Pre-surgery, still a little tired, especially with the three hour time difference.|
The next few days were spent going to the Children’s Museum, the Aquarium and and spending time with my brother and sister, and her family.
|Easter with the Mills.|
|It was a beautiful Easter Sunday. We enjoyed a walk and nearby park.|