Adalyn Turns 1

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.

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Such a Big Girl

I can’t believe our little girl is celebrating her first birthday this weekend.  It feels like it was just yesterday that I was nervously driving her and mommy home from the hospital.  Time sure does fly by.  We couldn’t be more proud of Adalyn.  She’s growing physically and mentally like a champ and she hasn’t let Cystic Fibrosis get in the way in the least.   It’s very exciting seeing the world through the eyes of an eleven month old.  Everything is so new and interesting.  Of course now that she is toddling around there’s even more to explore.  Why just yesterday she found her Halloween costume, you know, the owl costume she wouldn’t have anything to do with?  Well, I guess, she just decided that she would put it on and go “Whooo…whoo…” all around the house.  Kayla managed to get some video of it on her phone.  Check it out below.  Too funny!

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Addy’s CF Awareness Video

The Great Strides walk is right around the corner!  Saturday, May 18, 2013 to be exact.  This will be our 2nd year participating in this UH-MAZING fundraising event.  We had an absolute blast last year walking with friends and family.  There is live music, free food, games, and the best group of people you could ever want to be around.  We urge everyone to join our team and help us raise money in honor of our daughter Adalyn.  If you can’t make it to the walk, please consider donating and helping us reach our goal of $10k.  This year, Kayla and I decided to make a little video showing how CF effects our family.  I hope it gives a little insight as to what Adalyn has to go through living with this disease.  The CF Foundation has made leaps and bounds when it comes to finding new medicines and treatments.  The FDA approved drug Kalydeco has opened the door to new research and brought us one step closer to a cure.  It’s definitely exciting times in the CF community!

51 Weeks

Kayla and I have been working really hard on a project we can’t wait to share! Be sure to check back in the next couple of days to see what we’ve been up to. In the mean time, here are a few images of Adalyn watching her first snow fall. Flurries in MARCH! How crazy is that?

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Getting Strong Now

The antibiotic was a success!  Adalyn kicked that cold in the teeth and is feeling much better now.  She even slept through the night…IN HER OWN BED!  It’s been like years since she’s….wait…O.K., so it FEELS like years since she’s done that!  🙂  We’re so thankful she is back to her happy self again.  She even struck a pose for me on the stairs today.  But as the last picture shows, she’s not taking herself too seriously.  Love it!

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Round 2

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.

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49 Weeks

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!

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Bye Bye Enzymes

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.

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