Category: Cystic Fibrosis

Clinic Time

TedCystic Fibrosis, Family Life

We’re proud to report that Adalyn aced her Clinic appointment today.  We had such a good time showing her off to all of the doctors and nurses who haven’t seen her since our last visit.  They all had to do a double take when they walked into the room because they just couldn’t believe how much she has grown.  Of course none of them could resist her sweet baby chub either!  I saw a couple of doctors give her little thighs a squeeze while they examined her.  🙂  Addy’s report came back with fantastic results.  We are currently on a super low dosage of Creon 3 (the enzymes that helps squirt digest her food) and the GI doctor saw no reason to increase it, her lungs sound great, and her weight is…ahem…above average.  We were told we could stop supplementing Adalyn’s diet with Neosure (usually given to preemies for weight gain) and move her over to regular ‘ol formula.  We couldn’t be happier.  Kayla and I both feel so blessed and we can’t help but be so proud of her.  Here is Addy in her hospital mask.  She wasn’t too bothered by it as long as it didn’t cover her eyes and apparently it didn’t taste too bad either…

Great Strides 2012

TedCystic Fibrosis

Wow, what a day.  We came, we strode, we conquered.  Today was our family’s first Great Strides walk and I can’t tell you what a fantastic time we had.  The weather was beautiful and the scenery of the GA Tech campus was awesome.  The sheer number of people who showed up to show their support to finding a cure to Cystic Fibrosis was phenomenal.  The energy was buzzing, making that three mile walk feel like one.  Ok, maybe not on that last hill, but still!  I can definitely see how families can make an entire day out of the event.  Tents were everywhere, kids were playing games, people chowed down on Jim N Nick’s BBQ, cooled off with snow-cones, and danced around to live music.

I want to send a big shout out to all the people who showed up to walk with us and support our team, Solid Giving Back.  Thank you so much for being there and giving your time and energy for our little girl and the thousands of other CF patients.  We love you guys!  To those of you who couldn’t make it, thank you for your donations and words of encouragement.  It means the world to us having such great friends and family.

It was announced that GA raised over $1.08 million!  The most in the NATION!  Our team ended up contributing over $6k!  Which I think is super strong for our debut.  🙂  Next year we’ll shoot for the $10k mark and earn that tent.

Adalyn made an appearance at the walk but quickly complained of a “pulled hammy” and had to sit out of the event with Mommy and Granna (kidding she was just fussy).  Hopefully next year she’ll remember to limber up before attempting the three mile hike.  Kayla and I had to leave pretty quickly after the walk portion of the event and I hate that we couldn’t spend more time getting to know our “online” friends, like the Butler Family of team Peter’s Pavement Pounders.  If you haven’t checked out their site, it’s a great CF resource and Marchet is quite the photographer.  Unfortunately our mentors Allan and Tabitha, weren’t able to make the walk but we hope everyone is doing well and we’ll catch up soon!

Thanks again to all of our family and friends for making this such a successful day.  We look forward to doing this again next year even bigger and better!

Green Light

TedCystic Fibrosis, Family Life1 Comment on Green Light

We’re so proud of our little Addy.  Her first Clinic went really well.  She was poked and prodded for a good 3+ hours but took it like a champ.  The team at Children’s were just stellar.  All the doctors we saw were extremly helpful, willing to listen, and answer any questions we had.  Oh, and we’re happy to report that Adalyn achieved her goal of being in the 50th percentile for BMI earning her a “Green Light.”  Little Addy is already proving to be an overachiever…ahem… like her mother.  🙂  Now, it’s up to us to keep her within that range and ensure her light stays green for as long as we can.  I asked Adalyn after we heard the good news if there was anything she wanted to tell Cystic Fibrosis and she said:

Clinic Ready

TedCystic Fibrosis, Family Life

We’re all pretty excited about Adalyn’s first Clinic tomorrow.  It’s basically a Doctor Palooza where Addy will be examined by about 7-9 different specialist (Pulmonologist, Gastroenterologist, Nutritionist, Pharmacist, Physical Therapist, etc.) all of which will be recording her health and giving us critical advice on how we should proceed with treating our little girl.  It should be quite an adventure.  I don’t know if we’ve had Adalyn out of the house for that long before!  But, we’re in good hands and we’ll leave with more information and understanding of our little lady’s health.  Oh, and I just want to leave a special shout out to our mentors Allan and Tabitha.  Thanks for taking the time to talk to us and give us guidance on our…adventure.  You guys are great!  🙂

 

Doors are Opening

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So I’m in the “office” at home, trying to get some reading done, when I see the adorable face below staring at me.  How can I get ANY reading done with such a sweet stare like that?!  She just melts my  heart.  Focus, Ted, focus.  So what exactly could steal my attention, even for a second, away from my little girl?  Well, I was just reading about the new drug Kalydeco (kuh-LYE-deh-koh) that was recently approved by the FDA which directly targets the cause of the underlying illness in patients with Cystic Fibrosis.  This drug has been working miracles since it’s release.  It’s taken in pill form and dramatically improves lung function, lowers sweat chloride levels and helps patients gain weight.  It truly teeters on the brink of being called a cure.  I can’t stress enough how wonderful this drug is.  It only comes with one caveat.  Right now, it only treats Cystic Fibrosis patients with the G551D mutation.  This particular mutation is roughly 4% of the CF patient population.  The vast majority of CF sufferers (~90%), including Addy, have a different mutation, the Delta F508.  As you can imagine finding a drug that works as well as Kalydeco in patients with the Delta F508 mutation is a TOP priority.  The research and development of this drug has opened up the doors that will ultimately lead to a cure for the rest of the CF population.  Phase two trials are already under way where Kalydeco in combination with another potential therapy, VX-809, is seeing positive results in people with the Delta F508 mutation.  Take a quick peek at the video below Addy’s pic.  It’s short, about 6 minutes, and will give you a little more insight to what I’m talking about. Oh, and it won YouTube’s “best video” in the DoGooder YouTube Nonprofit Video Awards for the Large Nonprofit category!  Kayla and I are participating in the Great Strides walk at the 2012 Atlanta – Georgia Tech IC Lawn on 05/19/2012 click here if you want to support Adalyn by donating or signing up to walk with us.  I’ll post more details soon.

Rookie of the Year Award

TedCystic Fibrosis

Today’s appointment with the CF specialist didn’t quite go our way.  After a great weight gain last week, Adalyn has since only gained 3 oz.  We are chalking up the shoddy weigh-in to us running out of the digestive enzymes she is supposed to take with every meal.  These enzymes help Addy absorb the food she is digesting and without them she just can’t get enough calories or nutrients.  Kayla and I got a stern “talking to” by the physician who told us we could have always called and had the on call doctor order us some more.  Ouch.  We really should have been more proactive about the situation.  Instead, we spaced out what enzymes we had left in anticipation of getting more at this appointment, which was only a couple of days away.  Kayla and I have stopped beating ourselves up over this and realized it’s time to get focused.  We have one week to get Adalyn to 8lbs.  We left the doctor’s office with a strong game plan and now it’s just a matter of us performing.  We’ve got plenty of enzymes, vitamins, and a new prescription that will help the enzymes do their job even better.  We also decided to supplement with some formula at night to help with the weight gain.  We’re parents on a mission!  Takeru Kobayashi better watch out!  We’ll keep everyone posted on how it goes.

Weight Watchers

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Last Wednesday, Squirt weighed in at 6 lbs 6 oz.  At Adalyn’s first appointment with her pediatrician, Dr. C wanted Adalyn to gain at least 3 oz. before her next visit in one week.  I’m happy to announce that Addy has blown past the 3 oz mark and currently weighs in at a healthy 7 lbs thus surpassing her birth weight!  We’re so proud of her.  Cystic Fibrosis patients typically have a difficult time gaining weight so we’re super thankful that she is doing so good.

Positive

TedCystic Fibrosis, Prego Life

We recently got the call from our genetics counselor, Catherine, with the results of the Amnio test.  Kayla switched the phone to speaker and we both held our breath waiting to hear what Catherine had to say.  With one word, “Positive“, our world came to a halt.  Our hearts sank and our eyes welled up with tears.  Catherine told us that both CF genes, the one Kayla carries and the one I carry, have been found in our daughter’s DNA.  Our baby has Cystic Fibrosis.  Guilt, fear, anger, and uncertainty all seemed to be fighting to rule our emotions.  Uncertainty won.  We had so many questions.  Things we didn’t think we’d be worrying about now at the forefront of our lives.  I don’t even remember the rest of what Catherine had to say.  I don’t even remember ending the call.  Uncertainty would continue to rule until our next doctor’s appointment last Thursday.  Kayla had a follow up exam with the doctor who performed the Amnio test.  The ultrasound projected a healthy and happy baby girl.  Catherine came in to check on us during the examination.  She had called her contacts at Children’s Healthcare of Atlanta Cystic Fibrosis Center and told us to expect a call from them later in the afternoon.  It was around 4 o’clock when Kayla’s phone rang with a positively cheery voice on the other end.  It was, Barbara, Pediatric Nurse and CF Program Coordinator.  During the half-hour call Barbara pulled us up out of the hole we had fallen into.  She is obviously passionate about the CF program and has been doing what she does for a while.  She could sense our uncertainty but she said exactly the things we needed to hear.  She gave us a website to go to.  She gave us contact information.  She gave us an appointment to meet face to face.  But, most of all she gave us hope…  Thanks Barbara.  We’re looking forward to teaming up with Children’s to keep our baby girl healthy and happy.  Between them and our wonderful family, I think we’re going to be just fine.