Three years ago our son Landen was born with a severe heart condition. We were shocked and devastated when doctors told us that he was not expected to live to his first birthday. Our little baby boy had a hard fight ahead of him. To symbolize the courage he would need we put a stuffed lion in his bed and we gave him the middle name Lion. To us, the lion stood for strength, courage and hope, all of which we knew our son had, and would need in his fight to survive. When Landen was two months old, the doctors found out that his heart condition was caused by a rare disorder called LEOPARD syndrome, a RASopathy. By this time, our little Lion was in end-stage heart failure. Doctors gave us a choice: we could either take him home and enjoy what little time was left, or try for a heart transplant. We knew our little Lion had more fight in him, so we listed him for a heart transplant. On Mother’s Day, at 3 months old Landen received his life-saving gift and also another unexpected gift. Our donor family sent a little stuffed lamb that matched our son’s Lion perfectly, it had been in their daughter’s bed while she fought in the hospital. We now say “Our strong lion has the heart of a little lamb.” Three amazing years later, we are still grateful for every day we have with our son, but with this gratitude comes unending oversight and heartfelt work. For example, our son takes multiple life-saving medications several times a day and his prescriptions are adjusted frequently. Landen has 11 doctors and has had multiple hospital stays and surgeries. He also has a feeding tube and other medical equipment with which I keep detailed records of his daily calories and fluid needs, and track his heart rate every day. One night, exhausted from organizing, tracking and managing Landen’s medical needs, I thought to myself, “There has to be a better way… something easier, more convenient and more accurate.” The Pocket Physician was created.
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Our blog posts will also include guest posts and are intended to spread awareness and education. We want to highlight special diagnosis, medical conditions, and medical miracles. If you have a story, submit it here!
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