The Christmas tree project addyson wanted to do for Hopkins is starting to come together. We currently have 12 trees at the house w 8 strands of lights 2 star toppers and 7 things of mini ornaments. A few others have reached out and are sending trees. Thank you to everyone for helping miss addyson give back to a hospital that she has visit throughout her 6yrs of life.
Living w a chronic / rare disease has made life a little complicated but addyson handles it all with a smile on her face. Road blocks to her are just a challenge not a stopping point. While we never expected iv gravity feed bags, vent bags, flushing and venting to be in our every day language it is and we are Impressed with his addyson handles it. She ha learned to carry her purse w her everywhere with her syringe for flushing and venting so it can be done when needed. She isn’t afraid to discuss her tube or stop to take care of it. There are times where I wish this wasn’t our normal and that she didn’t need any of this. I wish that her surgery was a cured thing and there wouldn’t be anymore worry for future procedures but we have learned with addyson that is never the case. She likes to be the odd statistic. Over the past few days I have chatted w some other cecostomy kids who are patients at Hopkins and it’s great to connect. Just having others who can help to answer questions is huge. We are thankful for her friends who haven’t treated her any different because of her tube and her coaches and teachers who are learning step by step with us on what’s ok and what isn’t. Some of our family and friends are helping us fight the insurance battle and we appreciate every ounce of support and sometimes just need to vent. Thank you for listening
On a different note we went to Hershey yesterday for Ethens special needs hockey team to play a game on the rink of dreams and then to watch the bears game. There was a major accident that shut down 83 and it took us 5hrs to get to Hershey we missed his game time but he handled it well. We got there in time for him to support his team for the last period of the game and he did just that. He cheered them on and rolled w the punches. (Would have been a different story 2yrs ago). We talked about how he was still part of the team even though he missed the game. How cheering your team mates on is impressive even if you can’t play. We discussed how addyson did this after her surgery. He was so excited to watch a close friend score a goal!! (We love you Ryan).
Overall we had a great weekend and are so excited to have no drs appointments this week just the normal sports schedule.
Beaming with hope 