A Year in Numbers...

One year ago, we received the devastating news that J had Cystic Fibrosis.
I remember it like it was yesterday, I can't believe it's been a year.
I don't know if I ever really told the story about how he was diagnosed... J wasn't gaining weight, in fact he was losing. I remember taking him to his pediatrician after switching to a 2 hour feeding cycle. J had lost 2 ounces in 2 days, needless to say the doc was worried. He told me the next thing to do was some testing, and that I should go home and pack our stuff and head up to Primary's. There I was, a new mom, sitting in a cold doctor's office feeling completely helpless and out of control. My first emotion? Fear... but then I was angry. Why was he being so over-cautious? Couldn't we try something else before having to go to Primary's!? That seemed like a last resort to me. I quickly (with lots of tears) rushed home, packed a bag, called Matt and then called my mom. Matt had a game that day, but my mom could go with me to the hospital. We finally got checked in, and I was frustrated. Couldn't these people tell that my child was fine and that we didn't belong there?
After a day of sitting around (literally) I called our pediatrician. I told him nothing had happened and I was getting frustrated. All of this through major tears of course. I was having to sit in a sterile hospital room, had to start breast pumping and feeding my child with a bottle, and measuring what went in and what came out. I was tired and just wanted to be home! I had given birth 3 weeks earlier and was still uncomfortable and healing myself. Within an hour, the doctor came in a discussed a plan. At Primary's, they will run every test possible to rule everything out before you are released. At the time I thought this was such a burden. I remember asking if we could run some tests and then go home to wait for the results, but the answer was a definite no. I remember thinking, with dread, that we'd have to stay there one more night. How awful! Anyway, to make an already long story short, they ran a battery of tests, one of which was a sweat chloride test. The first guy who came to administer the test (who I think I went to elementary school with) didn't collect enough sweat and the test came back inconclusive. You might think that's no big deal, but the test is not fun. Especially when it's being performed on your 5 1/2 pound newborn. They attach these electrodes to their arms, which are attached to something that looks like a car battery. Here's a picture:

The next day, a girl came back and hooked him up again and then packed him down with heat packs, wrapped him in 3 heated blankets and I held him while praying that we got enough sweat this time so he didn't have to go through it again.
The results came back that day, and we found out in less than gentle words. The resident we had been working with came in to tell us that she was moving us to the 3rd floor so he could receive some more specific care. I told her that we wanted to wait until our doctor came back with the results and she said,"Oh, it's positive. He has CF." That's it. Just like that. I asked her to leave and waited for Matt to arrive. My mom was there with me, but I know I wasn't very gracious to her, I was just reeling. Matt got there and we cried and cried and held J and hugged. A few hours later, the state called with his newborn test results. Those showed up positive too. We had no idea what to expect. The next 3 days were a whirlwind. We were transferred to the medical floor and put in a unit with nurses who understood CF and had cared for CF patients before. It was like drinking from a fire hose. I mistakenly did a little internet research, which was a very bad idea. I laid awake at night wondering what this meant for our family, for J, for everything. Upon coming home, we were both grieving and depressed. We were fighting this new normal of our lives and felt sorry for ourselves and our little one. We were overwhelmed with encouraging cards, texts, and friendly visits. But, we were also overwhelmed with sadness, guilt, and the unknown. The nurse called about a week later and told us he had the Double DeltaF508 mutation, the most common in CF. We found a little comfort in that, knowing that lots of the research is being done within this gene mutation. We trudged on, answered questions, and smiled when people said things we didn't appreciate. We leaned on each other and, more importantly, relied completely on the Lord to give us strength to care for J the way we needed to.
So, here we are a year later. Prayers answered. We have fully adjusted to our "new normal" and I dare say our families and friends have as well. People understand J and his needs and are so aware and sensitive to them. We are so grateful. J is a pretty wonderful and amazing little man, with a great attitude, sense of humor and little personality. Here's our first year with CF, by the numbers.
- 6 days in the hospital (for that first diagnostic visit, nothing since! Yay!)
- 735 percussion treatments
- 1400 puffs of Albuterol
- 335 vials of Pulmozyme (that's $26,800 worth if anyone's keeping track...)
- 670 vials of HyperTonic Saline
- 5 rounds of antibiotics
- 9 months on "house arrest" (would have been 8 if not for the dreaded measles outbreak in our area!)
- 395 ml of vitamins
- over 3,000 digestive enzymes
... and the list goes on!
I don't want you to think I'm focusing on CF in any way. It's just amazing to see what has happened in a year and to see God's provision through all of it. J has been healthy (only a few colds),  and has developmentally stayed on track for his age. We are thankful that we caught this early before he got too sick. We are thankful for medicine, for research, and for places like our CF Clinic at Primary's and for the Cystic Fibrosis Foundation. We are thankful that God has provided for us emotionally, financially, and has given us strength for each new challenge and each day. We are learning to take life, and ENJOY life, day by day.

^"For in him all things were created: things in heaven and on earth, visible and invisible, whether thrones or powers or rulers or authorities; all things have been created through him and for him. He is before all things, and in him all things hold together." - Colossians 1:16-17

In honor of Jason's Bumpa, Craig, we're decked out in our Utes gear today. Craig's favorite game was the Utes vs. BYU game, so we're ready to cheer! Go Utes!