Such a Big Girl

TedFamily Life

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

TedCystic Fibrosis, Family Life, Home 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

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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

TedFamily Life

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

TedCystic Fibrosis, Family Life

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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Cinemagraph

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In one of my bro-in-law’s college media classes, he was tasked with capturing footage to use in a Cinemagraph.  After hearing him describe more of what the assignment entails, it inspired me to try my hand at making my own.  It was a pretty fun experiment.  I wish MY college classes would have had assignments like this.  🙂  I’ve already started to think of the next one I’m going to make.  Check out some other examples here.

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49 Weeks

TedCystic Fibrosis, Family Life

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

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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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Constructing A Cure

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We’ve been teasing about some big news for a while now.  We have not one but TWO exciting things to announce.  News item #1:  We’re VERY pleased, excited, nervous, and thrilled, to be chosen as Choate Construction’s sponsor family for their internal 2013 CF fundraising campaign.  This is a BIG deal.  Choate has been involved with the CF Foundation for over 20 years and the last 2 years they have raised $90,000 and $115,000 for Great Strides!  We’re so honored that Adalyn will be the face of their campaign this year.  It starts in March and we’ll have a lot of work to do in order to get the campaign started off right.  One of our duties, as the sponsored family, is to attend and speak at a Monday morning staff meeting.  Neither Kayla nor I are very good speakers, but we’re more than happy to do it for our little girl and the CF cause.  We’ll also be sending the fine folks at Choate weekly updates of how Adalyn is doing as we get closer to the Great Strides walk in May.  Maybe Adalyn will even be showing off her toddling skills by then!  She’s already starting to take baby steps, did you see the video?  We can’t believe it!  Again, we’re so proud to have been asked to be a part of Choate’s campaign.  The CF Foundation’s efforts, funded by all the donations they receive, has helped make it possible for Adalyn to thrive despite having this disease.  We’re hopeful that their continued research will one day find a cure.  Be sure to check out the Cure Me link near the top of this site to see all the latest medicine and therapies currently in the pipeline thanks to your donations.  VERY Exciting stuff!  News item #2 to follow shortly.

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