As we drive home after another great week at the TMA’s family camp, I can not begin to express how grateful I am for the camp experience. Family Camp is a magical place. My daughters love all the camp activities. Boating, fishing, arts and crafts, swimming, wood shop, music... The list keeps going. They see camp as a place for nonstop fun, and my husband and I love to experience that with them. For me, the amazing thing about camp is the knowledge I gain. When your child has a rare disease, there are tons of unknowns. Camp provides a chance to learn from other families and the medical professionals that attend camp. There is something so amazing about being able to sit down at dinner and talk to another family who knows exactly what it is like to balance daily life and endless doctors appointments. I cannot even begin to explain how amazing the doctors and nurses are that attend camp. They lead educational sessions every afternoon for the parents. I love that in these s
Part of my daughter's treatment for her autoimmune disease includes infusions at the hospital. She receives monthly infusions of a blood product called IVIG, and every few months she does an infusion of an immune suppression medication called Rituxan. Infusion day can be long and boring, but we are thankful for treatments that seem to be helping. We've been doing this process for over a year now, so we seem to have a good system in place. 1. To make an infusion go smoothly, it is best to prepare the day before. The most important thing is hydration. Get that water bottle out! Her infusions are given by IV, and a well hydrated body makes it much easier to get an IV in place. https://pxhere.com/en/photo/1434971 2. Pack a bag to keep your kiddo busy. Sitting during the infusion can be really boring. My daughter's infusion sometimes take 6 or more hours. Sometimes she falls asleep, but not always. We bring a bag with homework (super fun), games, crafts a