So we survived influenza and everyone is on the road to recovery. Carter and I along with Danica were able to stay healthy and that is only because of God. Without him and his protection it would have been a different story. Thank you all so much for praying for all of us and our family! Danica has now been started on her new feed and in two weeks we will see how much weight she has gained. The goal eventually will be to get her to pedia sure it has more calories then what she gets now with nutramigan. She is quite the active little girl and is crawling. Yes I said crawling little by little everyday and its amazing. We have to figure out a lot yet as she gets tangled up in seconds with all her cords and tubes. I received a call from Dr. Ocejo saying they have now made special tubing for Danicas Airvo system which is her high flow system out of California and it can switch her from her low flow to high flow which will be great when we can actually get it cause it actually snaps into her cannula so we wont have yo worry about it coming apart which is such a relief for all of us. So we will have to wait to get those in. We head back down to Mayo at the end of this month. Actually on Danicas first birthday is when her appointments start. Her first birthday its incredible to even say that. Its been a hard first year and something Chad and I never saw coming. From her second day of life when she crashed and we thought all was lost to her many hospital stays to her first transfer to Mayo where we found out her diagnosis and what it meant for her and the rest of our family. She had one of the rarest lung diseases and on top of it a brand new genotype of the disease the first of its kind. She and our family has come so far in this first year. It changed our life and our familys life. We never knew how much of a change until we came home after our first Mayo stay. So many things we learned as far as equipment and care and what it meant to have a child with this rare rare disease. It wasnt easy everything in our life changed. It was catered to Danica and what she needed to survive and make it as far as she has. Our two little ones Carter 6 and Kyra 2 didnt really know what was happening and what this change meant for them as well. Their lives have become something so different then what it once was. But as we continue to pray and believe and trust for Danicas healing we know one day our family will be able to do things as a family together without the hindrance of what we have now. They have been so good and endured so much. We all have and Danica has endured the most through everything she has faced in this first year her personality and disposition has never changed. She is the most beautiful little girl that touches our hearts so much and she has been such a blessing in our lives. It will be interesting to hear what her doctors at Mayo will say and what they may try for her as far as a new course of action for her. Hopefully it wont be a long stay this time. Thank you for your support, prayers and love for her and Our family. We wouldnt have made it this far without it. We continue daily as do our families to find new ways to share Danicas story and our familys to people we hope to get funding for Danicas disease to help further research as there is not much known and she is the only one in the upper Midwest being treated for her disease and at Mayo. So if anyone knows of anyway to share her story please let us know we are always looking and searching. We hope to one day pave the way for other families. Thanks all for your continued support! We will keep updating and sharing her journey and our familys as we start this new year and all the milestones Danica hits!
Posted on: Sat, 10 Jan 2015 21:36:38 +0000