Category: Cystic Fibrosis

Just when we thought Adalyn was getting better, the cold decides to come back.  Addy has a nose that won’t stop running and a wet cough that will break your heart to hear.  She seems fairly happy during the day, all things considered.  But, things get rough come bed time.  If she’s not having trouble breathing, she’s waking herself up with coughing fits.  Along with Albuterol treatments, CPT, and a Nasal Steroid, the CF nurse has prescribed an antibiotic and fully expects Adalyn to feel better by the weekend.   If not, we’ll move on to plan B.  Oh, we can’t wait till our little girl is back to her happy self again.

Adalyn has almost kicked the cold she’s been fighting all week.  Our Pediatrician determined it was a virus and that we would just have to let it “run it’s course.”  It all started Sunday night, Adalyn simply couldn’t stay asleep due to some major sinus congestion.   When she didn’t get any better on Monday we decided to take her to the doctor for an examination.  By the time I got home from work Monday night, Adalyn was exhausted.  She could barely hold her head up but couldn’t go to sleep either.  Kayla and I felt so helpless.  But, to be safe, we also ran the Pediatrician’s diagnosis by our CF Nurse Coordinator who proceeded to prescribe Adalyn inhaled Albuterol treatments and Flonase.  Luckily, it didn’t take long for us to start seeing results.  Tuesday was still pretty rough but by Wednesday we could tell Adalyn was on the road to recovery.  Now we’re just battling a runny nose.  But that isn’t stopping this baby girl.  Addy is back on the move!

It’s been a while since we had to administer Albuterol.  Looks like we need a bigger mask.  Doh!

So if the Choate Construction news just wasn’t enough, our family received a wonderful report from Adalyn’s GI doctor this week.  During our last Clinic appointment, Dr. Pilzer ordered a test for Adalyn to see if she had an enzyme sufficiency that would allow us to get rid of the medication all together.  Well, the results are in and we’re very excited to say that Adalyn’s trypsin and elastase levels are normal.  Our little girl no longer has to take enzymes!  We’re super thrilled to hear that Addy’s pancreas is working like it should.  Unfortunately there’s no guarantee that we’ve seen the last of those little pills.  But, for now, we can better focus our efforts on keeping Addy’s lungs healthy and clear.

OK, the image below has NOTHING to do with our Clinic appointment today.  But, it’s waaaaay too cute not to post.  Alright, now that I’ve got that out of my system, I’d like to journal our exciting Clinic experience we had today.  For those of you new to the blog, Adalyn “goes to Clinic” once a quarter.  It’s 3-6 hours of  Mommy, Daddy, and Addy all sitting in a room at Children’s Health Care of Atlanta while their entire Cystic Fibrosis Team come in one-by-one and examine our little girl.  We see a Social Worker, a Nutritionist, a Tech to take weight and measurements, a Pulmonologist, Pharmacist, Repratory Therapist, Gastroenterologist, and a Nurse that processes throat cultures and administers labs.   We’ve seen these kind folks once a quarter since Adalyn was born and we’ll continue seeing them until she’s an adult.  As you can imagine, these people are like extended family to us.  They laugh with us, they cry with us, and they just can’t get enough of Adalyn.  Today was an especially interesting visit.  Addy’s GI doctor noticed that she is on the lowest possible dose of Creon, an enzyme supplement she takes with every meal that helps her body process fat.  Usually by the time infants begin eating some solid foods the dosage needs to be increased.  A healthy individual’s pancreas secretes these enzymes naturally.  However, with CF patients, their pancreas can often get clogged with sticky mucus blocking the enzymes from being deposited into the digestive system.  A good indication as to whether or not the enzyme is working is by counting how many times Adalyn “goes number 2” a day.  An average of twice a day is what we’re shooting for.  Interestingly, Adalyn seems to be thriving on her current miniscule dosage.  The Gastroenterologist has even ordered us a stool examination to see if we can quit enzymes all together!  This is SUCH a big deal to us.  While it’s become our norm to break open these pills and pour them out on some applesauce for Addy to eat before EVERY meal, being able to cut this routine out of our lives would save us so much time and hassle.   Especially when we’re out on the road or on vacation.  Quitting enzymes would also mean we would get to quit the Prilosec she takes twice a day as well.  Prilosec, in Addy’s case, simply helps the enzymes do their job better.  That would only leave us with the twice a day Chest Physical Therapy and fat soluble vitamins to administer.  I don’t know what we would do with all that extra time we would save.  Probably just take more pictures.  🙂

The Holidays are finally here.  With them has brought non-stop action to our little family.  With all the food, shopping, decorating, traffic, and weather, we feel like our lives are in overdrive.  But, in all of our hustle and bustle, we received news that made our family pause and give thanks.  The kind faculty at James Wood High School in Winchester, Virginia gave us a gift in the form of a generous donation to the Cystic Fibrosis Foundation in Adalyn’s name.  It’s so easy to get caught up in all the hype of the newest toys, jewelry, or electronics, but when people come together and give in honor of strangers like us, well…it just reminds you what this holiday is all about.  We want to thank the kind folks at James Wood High for their generosity.  Oh, and a very special shout out to Anita Lemke, thanks for all your effort in putting together this wonderful gift!

Kalydeco Wins The Wall Street Journal’s 2012 Technology Innovation Award for Medicine and Biotech.  Wow, the Crew wants to thank Vertex Pharmaceuticals Inc. and the Cystic Fibrosis Foundation for all their hard work and perseverance.  Adalyn’s future is looking blindingly bright because of you.  I also want to thank all of our blog readers that have clicked the “Cure Me” link above and have donated.  It means the world to us when people donate in Addy’s name.  From the bottom of our hearts, thank you so much!  We’re extremly excited to what the future holds.

Today was Adalyn’s quarterly Clinic appointment. We always have such mixed emotions about the day long “Doctor-Palooza.” On the one hand we’re apprehensive about the stress of it all: getting there on time, making sure we brought plenty of entertainment, food, drinks, diaper bag, etc. Then on the other hand we can’t wait to hear how Addy’s health and statistics are stacking up. We love hearing what percentile her height (51st %), weight (75th %), and head size (97th %) are. But, at this appointment we were especially worried because we knew that Adalyn was scheduled to get her blood drawn. YIKES! However, like always, we were blown away at how the staff at Children’s handled the situation. The numbing cream they used before they took the 5 viles of blood was pure MAGIC! The needle didn’t seem to bother Adalyn at all. She only became squirmy when she got tired of laying in the same spot too long. We are so thankful everything went as well as it did. I guess we don’t have to worry about our next Clinic appointment until next year! Yay!

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.”