All About Dayson

I've been dreading this post, so therefore have been procrastinating. This is a trial that I will never be grateful for. Most days I do not think about this, and therefore I just live my life. But the days that I have to think about it are the hardest days of my life. I will cry writing this. I will wish I could take this away from him. I will wish I could trade places with him. I will worry about the future and the unknown. I will HATE Cystic Fibrosis forever. My heart will break reliving it. But everyone should know how amazing Dayson is. He is the sweetest boy I have ever met. I love that kid. So here goes...

The minute I went off birth control I got pregnant. Kambria was 20 months old. Chet was more ready to have another baby than I was and I was hoping it would take a little longer to get pregnant. I was a little nervous about this pregnancy, but nothing like I was when I was pregnant with Kambria. I was staying busy with Real Estate and coaching high school volleyball with my sister and of course being a wife and mother. On October 24th, 2005 we had our ultra-sound and found out that the baby was healthy and a boy! I cried for about an hour after because I was so happy and relieved. We got a healthy baby boy, that is all we wanted. The next day Kambria turned 2. It was so nice to celebrate her birthday and the health of the baby. The rest of the pregnancy went as planned and my life was pretty easy. In January we had to make Kambria transition from the crib to a big girl bed. She did great. And then on March 31st  Dayson was born 2 days before his due date. He was so sweet. The sad part was that I had baby blues after he was born. I had never  really understood what that meant, but it was hard. I cried a lot, for no reason. Sleep deprivation also didn't help. My 2 year old was still VERY active, and life just seemed overwhelmingly hard. Dayson never seemed full, I thought it was my milk, so I stopped nursing at 7 weeks. When he was 3 months old he started coughing. We couldn't get the cough to go away. We were hyper aware of the cough because he had a cyst on his forehead by his eyebrow that needed to be surgically removed, and they would not do surgery until his cough went away. We had been to the doctor many times and could not figure out what was wrong with him. He was eating triple the amount of a normal baby his age, he was pooping 8 times a day, he had a cough, he was skinny and pale and tasted salty and he was not developing like other babies his age. Finally when he was 8 months old, I had hit my breaking point and I was crying to my friend and she convinced me to go see her homeopathic doctor. I was desperate for anything to work, so I made the appointment and she wanted my whole family at the 2 hour appointment. We sat in her office and told her everything we could think of that had to do with Dayson. She asked questions and even looked at one of his stools, because he had 2 poopy diapers in the 2 hours that we were there. At the end she said "I think he has Cystic Fibrosis, you need to call your pediatrician as soon as possible." We asked her what it was and she sidestepped the question. On the way home I called the Pediatrician's office and made a sick visit for the next day, it wasn't with our regular doctor, but with another one in the office. When we got home Chet had to run to his softball game and so after the kids were in bed, I got on the computer and googled Cystic Fibrosis. It was like reading about Dayson, he had almost all of the symptoms. But the only thing that I could see was that the average life span was 32. I broke down. I called my parents and couldn't talk because I was crying so hard. I finally was able to sputter out that he has all the symptoms of Cystic Fibrosis and I just remember them saying not to worry that everything would be okay and I was eventually able to calm down. Finally Chet came home and I showed him what I had found and he was just as calm as my parents had been and said "it will be okay." The next day Chet went with me to take Dayson to his sick visit and we told her that we wanted to have him tested for Cystic Fibrosis. She said she didn't think that Dayson had that and almost convinced me to not have him tested, but luckily Chet was there and made her set up the test. The first opening for the test was 2 weeks later. That was a very long 2 weeks. Deep down I knew he had it, but I was so hoping that he didn't. Finally the day of the test came and they told us it would take 1-2 days to find out the results. The next day I was at my Grandpa's house with my mom when his Pediatrician called my cell phone. I remember walking into the bathroom and she told me that the test results came back that he had it and that they wanted to do a second test just to confirm, but that it was hardly ever wrong. I broke down again. All I remember hearing her say after that was she was sorry and she really meant it. That made it even scarier. My mom cried with me and even my Grandpa cried. The next few days are a blur. I remember taking him for his second test and I remember meeting with the CF team at Phoenix Children's Hospital. I do remember feeling relieved that we finally knew what was wrong with him and that we could put him on the medication he needed. When his cough went away a few weeks later and his weight had gone up, I was happy for a brief second. There was so much to learn and remember, it was very overwhelming in the beginning.  

Breathing treatments- 2-3 a day - 

Albuterol and either Pulmozyme or Sodium Chloride

Chest Physical Therapy- 2-3 a day

Pancreatic Enzymes- with meals and snacks

Acid Reducer- 2 times a day

Inhaler - 2 puffs twice a day

Multivitamin - once a day

Extra Salt

High Calorie Diet

When he was 13 months old he had his cyst removed with no complications. From about 9 months to 16 months he was doing pretty good. But then at 16 months he stopped gaining weight and they started talking to us about a feeding tube. That scared me into feeding that kid like I never had before. Finally at about 18 months they were happy with his weight. Shortly thereafter we moved to Tucson. This was very hard on me as well. It was the first time that I didn't have my family close. I relied heavily on my family for support and leaving them was very difficult. Saying goodbye to the CF team at Phoenix Children's was very difficult as well. Going to the CF clinic in Tucson was different and so therefore I hated it. I didn't know anyone in Tucson and I just struggled with all of it. But like it always does, things started to work out. I met friends from church and Kambria was in a fantastic pre-school and we lived in a great neighborhood and business was going well. I found a part time nanny that saved my life, she was amazing and loved my kids like I do. We got to see more of Chet's family and I eventually learned to love the CF clinic in Tucson. Dayson was doing well and we learned to love Tucson.

We had been in Tucson for almost 2 years and Chet and I had been talking and praying about what to do next and finally one day it hit me that we needed to move. I remember crying to Chet that I didn't want to move to Pomerene, but knew that it was the right thing to do. He just laughed and hugged me. He was so happy. We moved right before Kambria started Kindergarten. She was so happy to be going to school with cousins. Right after we moved we got a dog for Dayson too. Her name is Tilly and for the first 2 years of Tilly's life, Dayson and Tilly would play for at least 4 hours a day. They would wrestle and play chase and a different version of fetch - Dayson would throw the ball and then race Tilly for it. It was quite entertaining. When Kambria went to 1st grade, Dayson went to pre-school. He had the best pre-school teachers ever. He loved them and they loved him. They were so good about giving him his medication and just watching out for him. Then the time came for him to go to Kindergarten. Luckily Chet's sister was going to be his teacher. I was so thrilled, happy and relieved. The principal knew all about Cystic Fibrosis too and was very understanding and flexible with whatever we needed. After a couple of months of going to Kindergarten, Dayson and I were the only ones home and he was eating dinner and stopped and asked me "Why do I have cystic fibrosis?" I had to leave the room and just cry for a few minutes. I finally came back and said "Well, you have it because daddy has a little cf gene and mommy has a little cf gene, and together we made you have a big cf gene." And then he asked "Why doesn't Bree have it?" I said "I don't know, but she has to wear glasses and you don't have to." And then he said "I wish I didn't have cystic fibrosis." I said "me too." But that was the only time that he has said that. We just keep comparing it to some people have to wear glasses, some kids can't see, everyone is different. The good things about it is that he is encouraged to play sports and they want him to live a normal life. He goes to school and plays and runs and jumps like everyone else. If you saw him, you would never know that anything was wrong with him. He is sweet, but can be bratty too. He will live a long and normal life. The medications keep getting better and he knows that we do at least 2 treatments a day and we take all of our medications. No questions asked.

He knows that he will always have to take medication and do treatments, just like we will always have to brush our teeth. We have a routine down and I'm so thankful for how helpful Chet is with all of it and thankful that Dayson hardly ever complains about it, mainly because he gets to play on the iPad while he does his treatments. I'm grateful for his doctors and the fact that we can live in a small town but be close to the big city that has everything that Dayson needs. I'm grateful for how patient Kambria is with all of it. She got the short end of the stick with all the attention that Dayson needed and still needs. I'm grateful for their relationship and love seeing them grow up together. Dayson got to have Chet's sister as a teacher again in 1st grade and he absolutely adores her. I'm so grateful for her and all that she does for him. I'm grateful for Chet's family and my family and the love and support that we get from them. I'm also grateful for all of our amazing friends that we have. I am so grateful to have the relationship that I do with our Savior, He has saved me many, many times. He has also been the one to guide us through this life, and we never make a big decision with out Him. I'm so grateful that He loves each and every one of us and I'm grateful that I can kneel down every day and thank Him for all of the many amazing blessings I have. I know that He loves me and I know that He loves Dayson. I know that with Him, I can do whatever I need to do for Dayson.