Category: Cystic Fibrosis

Adalyn’s love for hair bows is trumped only by her infallible taste in sippy cups. 😉  FYI:  Adalyn’s throat culture swab has been moved to tomorrow.  Hopefully we can get a rush on the results and know if we’ve kicked this pseudomonas bacteria or not.  We’re keeping our fingers tightly crossed.

We just wanted to update our friends and family of all the latest happenings with the ‘ol Crew.  First off is Adalyn:  She’s been doing great since starting her treatments.  She’s finished up her oral antibiotic and is plowing through the rest of her TOBI like a trooper.  She’s seemed to have gotten over her cough and is sounding/breathing like normal.  She’s showing no signs of being sick and, in fact, she’s been chock full of energy these past few days.  Hopefully things will continue the way they’re going and by September 7th when she goes back to Clinic to get tested, she’ll be pseudomonas free!  We’re certainly keeping our fingers crossed!  Unfortunately, our trip to the Botanical Gardens was rained out this weekend, but that didn’t stop us from playing outside in the yard.  Adalyn got into all sorts of trouble running around in the rain picking up flowers (weeds) and playing in the mud puddles.

Second update: we’re finally coming to the end of our house hunt.  We are set to close on our house September 3rd and we’ve narrowed the home we want to buy down to two.  We are going to revisit one of them tomorrow evening and plan on making our decision afterwards.  Exciting stuff!

Final update: Baby boy is doing great.  He’s measuring about 4-5 days ahead of schedule and the doctor advised us that he doesn’t see any need for Kayla to continue to come in weekly for a check up.  His heart looks healthy and the blood flow to his brain appears to be normal.  We thank everyone who’s been thinking about and praying for our family.  We greatly appreciate it!

That’s all for the weekend update.  I’ll close with a few pictures of Adalyn finally noticing the vapor that comes out of her nebulizer.  It kept her attention for a little while.  Until she found her foot, that is.  Silly girl.

Adalyn is almost 17 months old and with every day that passes she seems to want to get more and more independent. Tonight during her TOBI treatment she “insisted” on holding the nebulizer cup to her mouth the entire 30 minutes. She kept a firm grip on the cup, only letting go with one hand so she could throw punches in the air, while mimicking one of her favorite Disney princesses, Mulan. “Ha!…Ha!”, she would yell as she thrusted her free hand toward the iPad, terrifying her imaginary enemies no doubt. 🙂 This girl is pure joy to watch.

Kayla and I had a serious fit of déjà vu when we walked into the Atlanta Perinatal Office today.  We had been there so much with Adalyn due to her CF, we felt they would surely give us a reserved parking spot or at least loyalty points we could use toward a free cup of coffee.  We weren’t there this time for CF though, we were there because we’re having twins.  Twins automatically puts you on the high-risk list, CF or not.  Luckily, the visit was all good news.  The twins are doing fantastic.  Actually, growing ahead of schedule.  Kayla is currently 13 weeks along and the measurements the nurse took put the babies at around 14 weeks.  We were thrilled.  The two little stinkers wriggled around, sucked their thumbs, and even waved hi a couple of times.  It’s a little early to tell the sex of the babies but during the ultrasound the nurse observed the kiddos at every angle and gave us her opinion.  🙂  But, we’re not going to be announcing it here until after we have the amnio so we’re 100% sure.  Speaking of amnio, we also had to schedule  that as well.  We feel it’s the responsible thing to do.  Each baby has a 25% chance of inheriting Cystic Fibrosis.  We’re going to focus on the 75% chance that they don’t.  We’ll say many prayers and keep our fingers crossed but we want to be as prepared as possible.  Today was a great visit and we look forward to many more to come.  We just love seeing the little squirts healthy and active.

Adalyn got Gold Stars across the board at Clinic on Thursday. We’re so proud of her. Addy’s BMI is in the 60th percentile and her lungs sound clear. Oh, and she also got fitted for her vest! Yay! Mommy and Daddy’s arms are celebrating. 🙂 The Respiratory Therapist brought in a couple of adult sized vests so Kayla and I could feel the effects it will have on Adalyn when she starts to use it daily. It was definitly an interesting experience. We’ll be sure to write more about it once we receive the vest and have gone through our official training session.

Well, we made it.  This is a big moment for Kayla and I as parents.  Not only do we feel the triumph of raising a little human being for a full year, but this particular human is simply amazing!  Adalyn is walking, babbling, pointing, hugging, blowing kisses, and getting into all sorts of trouble.  We’re so proud of her.  Her birthday was a complete success.  Sure Mommy and Daddy, waited till the last minute to buy decorations, food, and presents, but the pressures of producing a meaningful first birthday melted away the moment our family started to show up.  We’re so thankful to have such a wonderful and supportive bunch of folks on our side.  Thank you all for taking the time out of your weekend to come by and celebrate Adalyn’s first birthday with us.  We love you all.

Adalyn also has an amazing support system outside of our family.  The CF foundation has played an integral role in her first year of her life.  To get a better understanding of the CF Foundation’s significance, I better start at the beginning…  Neither Kayla nor I had any idea that CF ran in our families.  But, as it turns out, we are both carriers of the genetic disorder and that means there was a mere 25% chance that Adalyn would inherent the disease.  We chose, of course, to focus on the 75% chance that she would be born a normal, healthy, and thriving little baby.  To be 100% prepared for our daughter’s arrival we decided to test Adalyn in vitro to determine whether or not she actually had CF.  Unfortunately, it was confirmed that she did indeed inherit both genes, one from each of us thus confirming our worst fear, that our daughter has Cystic Fibrosis.

It wasn’t long ago, that children with cystic fibrosis didn’t live to attend elementary school. But today, thanks to advances in research and medical treatments by the Cystic Fibrosis Foundation, many people with the disease can now expect to live into their 30s, 40s and beyond.  We’re so thankful the genetics councilor that handled our testing immediately put us in contact with someone that works hand in hand with the CF Foundation.  We’ll never forget that first phone call with someone who knew EXACTLY what we were going through.  She knew exactly what to say and she took us off the negative path Kayla and I were headed down and set us straight on the road to acceptance and hope.  The foundation has since played an integral role in our daughter’s development.  We go to Clinic every quarter, where Adalyn is examined and tested by the best CF team we could hope for.  Our daughter is THRIVING, thanks to the team at Children’s Healthcare of Atlanta and the amazing medications and treatments developed and funded by the CF Foundation.

We thank God every day that Adalyn’s case of CF has been very manageable so far.  We truly believe a cure is right around the corner.  The drugs currently in the pipeline have given us hope that this disease CAN be attacked from the genetic level and cured.  It’s only a matter of time.  Just watch this video!  It’s definitely exciting times in the CF community.  If you want to support Adalyn and help us  realize the cure, please show your support and donate.  No amount is too small.  We thank you from the bottom of our hearts.