It’s easy to forget our angel has a serious disease. She plays, laughs, and looks so normal and healthy. Sure, we supplement each meal with enzymes, we administer Prilosec twice a day, and we perform Chest Physical Therapy (CPT) in the morning and before she goes to bed. Oh and she also takes fat soluble vitamins daily. But it’s all just become routine for our family…Our “Normal.” We feel blessed that things aren’t worse than what they are. So many families have much more difficult challenges than we do. However, the past few days have been a wakeup call for us. If you read the previous post you know that Adalyn came down with her first fever Thursday night. Since then we’ve had a roller coaster of events take place that have rocked our world. A chest x-ray found that Adalyn has a mass in her lung that could be pneumonia or mucus. She’s been put on an antibiotic, more strenuous CPT, and a nebulizer therapy. Seeing Addy with her nebulizer mask on makes this disease feel so much more real. In my mind, the mask (and vest) have always been the face of Cystic Fibrosis. Most websites, pictures, and marketing materials show these devices when referring to CF. However, if you look at the past 25 weeks worth of posts on this site, you won’t see any of that. But, we’re going to do whatever it takes to keep Adalyn healthy and happy. It was with great anxiety that we followed doctors orders and administered the Albuterol via the nebulizer. But before we did, we called our wonderful mentor family, Allan and Tabitha, to calm our nerves and get some advice (thanks guys! you’re the best!). Adalyn surprised us though. We were expecting a battle. But, she took the new therapy like a champ (she even fell asleep!). Almost as if to show us that this is nothing more than adding something else to our “Normal.”
Don’t Panic
Our baby had her first fever tonight. She’s doing better now, but we’re keeping a close eye on her. Kayla noticed Adalyn was acting pretty grumpy and felt warm to the touch when she got home this afternoon. When things didn’t improve after I got home, we knew something was wrong. We took a quick temperature reading from the pacifier thermometer just to get an indication of whether or not her body heat was above normal limits. When it read over a hundred we decided to call the doctor. The doctor had us verify the temperature…rectally (sorry Addy)…and it confirmed our little princess did in fact have a fever. The doctor told us to go ahead and give her some infant Tylenol and to check her temperature again after an hour or so. Since then, Addy’s fever has been reduced to a much lower grade. She’s sleeping now but we’re keeping our eyes open and ears listening for any signs of complications. I’m sure we’ll look back on this moment and laugh at how concerned we got over a little fever, but for now we’ll just do our best to not panic. 🙂
25 Weeks
Mommy’s Home
Daddy Addy Day
What is a Daddy Addy Day? It’s when Adalyn and Daddy stay in their PJs all day while reading books, playing with toys, eating junk food, and generally getting into all sorts of trouble.
Time With Grandpop
Dad and Karen stopped by this weekend for a quick visit. I think Adalyn enjoyed the time she got to spend with her GrandPop, can you tell? Thanks so much for coming by guys. We had a great time!
24 Weeks
Dinner Time
Adalyn discovers the joy of food that doesn’t come from a bottle. What have we done?!
Addy’s Sleep Number = Mommy
Adalyn has become quite the traveler. This weekend she accompanied us to Publix, Sports Authority, Barnes and Noble, Granna and Papa Christoff’s, and even a cruise down the Silver Comet Trail. We’ve found that as long as we time it right (between feedings) she enjoys her time out. She just stares at all the new fascinating stuff around her. I think we stare at her in much the same way, just watching her explore and discover things for the first time. It’s amazing. Of course she gets a lot of attention from strangers too. While she may act shy sometimes, I know that she really likes it. 😉 Here’s Adalyn, at 23 weeks, tuckered out after all that running around.
