Our life is constantly changing, ups and downs. For a blessed month and a half, all of my children were healthy. Sadie's labs for this month show that her EBV/mono levels are on the rise again. She's been hospitalized the last two times this has happened. We are waiting and hoping that her body can heal itself.
My sister suggested that I re-introduce our family to go along with our updated pictures. So, here goes... if anyone has any questions, we can be contacted at firstname.lastname@example.org.
At age six, spunky little Sadie caught a cold. The tips of her eyes turned yellow, followed by her skin a couple of days later. We went to the doctor, had blood work done and went home. The following evening, he called and asked us to meet him at the emergency room. Sadie spent the first of many nights in the hospital that night in January of 2012. The next morning, we were given the choice between having her life flighted or for us to immediatley drive her down to Primary Childrens Medical Center in Salt Lake City. This is a 3 1/2 hour drive from our house. We drove her there with only a few minutes to pack and say good bye to our other three girls. Baby Trevin came with us. Exactly two weeks later, Sadie had a liver transplant. She would have died without it. Her doctors never found a cause for her liver failure. She became the first liver transplant patient to walk before leaving the hospital. We had an abrupt introduction to the frightening world of medical problems.
Our little Trevin just turned two years old. He spent 11 days in the hospital at birth. When he was one month old, I began to notice spots, similar to birth marks or bruising, forming on his body. I mentioned them to his pediatrician. Without being given a reason, he sent us to see an optomologist and a neurologist. During Sadie's first week at Primary Childrens, Trevin had an MRI done at the same hospital. His official diagnosis came just a few months ago. He has a rare form of Neurofibromatosis Type One, or NF-1. Primary Childrens treats children from three families with this condition. There is no cure, no prevention, and it progresses as a child ages.
What is NF-1? It is a chromosome disorder that affects the skin and nervous systems. Trevin is missing 14 or 15 genes, and with the exception of the NF gene, doctors do not know what they do. Trevin's geneticist, Dr. V., is on the national board for this disease. He told us to expect Trevin to develop many tumors and that our sweet little boy will have "severe" complications. There is nothing anyone can do to prevent the tumors. We do not know what the future holds for Trevin or if he will get to grow up. My heart breaks thinking about it.
Natalie is nearly twelve. She is stoked to go to girls camp this summer. Although she is shy, she loves to try new things. She likes swimming, hiking and riding her bike. This girl loves to read. She is learning to play the violin and practices for hours without being coaxed. She grew up a lot during Sadie's hospitalization. Being the oldest, she felt the added weight of having me gone during those months. It took nearly a year for her to begin to laugh and act like a kid again. The anticipation of Christmas brought her smile back. love Natalie's laugh and am grateful we hear it more these days.
Rachel was eight when Sadie became sick. It was very hard for her to understand and cope with the changes in her little sister. Sadie's medications caused her to rage, and Rachel resented that anger and the attention given to Sadie. Rachel was mad that her sister had gotten sick. Time has healed much of Rachel's pain. She has turned into a champion thinker. Of all my children, she is the one who asks the most questions. She wants to know God's plan for us and why things happen. She wants to know about the eternities. Her inquiries have led to many treasured moments as we talk as a family. We can't answer all of them, but that's okay. Rachel adores Trevin. Rachel loves riding her bike, reading, and is trying to learn to play the piano. Rachel is a challenge taker. I love her big dimpled grin.
And then there's Sadie, a champion in my eyes. She has turned into quite a poised young lady. She loves to talk about her transplant. Also, she loves to sing and dance around the house. She is caring and nurturing for others. I can count of her to share without being asked. At night, when she is supposed to be sleeping, I can often hear her reading stories to her little sister Alyssa. They are the best of friends.
Little Alyssa makes us smile. She makes us laugh. During the weeks we were at the Ronald McDonald House, I noticed a change in her. If Sadie would cry from pain or not wanting to take her medicine, Alyssa would leave the room, hide behind a door and cry. She is sensitive to others pain. She can also let us know when she's had enough. Last week we were sitting at the kitchen table talking about Sadie's health. In a very snotty, un Alyssa like voice, Alyssa snorted, "Mono, mono, mono, I have mono." Although she was seriously disgusted, we burst out laughing. In her own little way, she had told us that she was sick of the medical talk. This little angel almost always has a smile on her face. She has the unique talent to be happy. Her cheerfulness buoys me up on rough days.
And then there is our little boy. He is so fun and loved. As I write this, he is sitting on my lap biting his shoes. Not sure why. He is two and just recently learned to walk with the help of physical therapy. I am actually excited that we have been told that he is ready to start speech therapy. I want to hear what he's thinking! I've been trying to teach him sign language to go along with his speech and it seems to help. This precious boy loves dogs, horses, tractors and his Daddy. He squeals in delight each time David walks in the door. Now that he can walk, he is making up for lost time. He has a whole world to explore and he is always on the go. He loves dirt and being outside. Over the past two years, being able to hold him has often been balm to my troubled heart.
Finally, let me introduce David and myself. David is a Cache Valley Utah boy, and we currently live in my home town, Menan, Idaho. We love country life. David spent two years in Chile' on a mission for The Church of Jesus Christ of Latter-day Saints. I went to Ricks College, now BYU-Idaho, before meeting David at Utah State University. He studied accounting and I majored in early childhood and severe special education. We continued to live in Cache Valley for about 10 years and had four daughters. We then spent a couple of years in Syracuse Utah before coming back to Idaho where Trevin joined the family. We have a loud, crazy, fun, emotional house and try to keep things positive for our kids. I hope they will look back on their growing up years with happy memories and know that they were each loved immensely.
That's us. We just do the best we can everyday, not knowing from one day to the next what to expect. Being a mom has been the best thing that happened to me, frazzling and overwhelming as life can be. We treasure the friends we've made each place we've lived and look forward to making positive new memories in the future.
Find more information on NF-1 at Childrens Tumor Foundation.