Oh. My. God. It’s. Happening.

The excitement of today ranks up there with the excitement of our engagement…our wedding…the birth of our son…

KALYDECO WAS APPROVED BY THE FDA!

I’m pretty sure my daycare kids think I’ve completely lost it. I’ve been shaking, crying and on the phone all morning. I will never, EVER forget January 31st, 2012!

We were not supposed to get news from the FDA until April, so while we would have been excited then – getting the news this early brings my joy to an entirely new level.

My son is getting the chance to live a NORMAL life. For the first time ever -  a drug is correcting the underlying issues caused by the malfunctioning gene. I feel like I’m watching a Science Fiction movie – someone please pinch me, is this real life. Is this REALLY HAPPENING??!?!?!!?!?!?!

Yes, we will still hopefully be participating in the trial of this drug for kids ages 2-5 later this spring. We know that our clinic was chosen as one of the sites to be studied, just waiting on more news so we can begin the process of enrollment. From the get go, this study has not been about whether or not the drug works (it does!) whether there are any major side effects (there aren’t!) it’s about finding the correct dosage for children this age.

What the FDA approved was use of this drug for qualifying individuals over the age of six. So obviously, Gavin is not in that group BUT most drugs are approved this way, and often a doctor can determine whether or not a child under that age can use it (this case might not be that way, because of the extremely high cost – nearly $250K per year). Yet to me, that age doesn’t matter – Gavin WILL get that drug. It WILL be changing our lives. The face of Cystic Fibrosis has been changed forever.

BUT – we are at a point of not if, but WHEN. I cannot contain my excitement.

When we first heard about VX-770 – now known as Kalydeco – it was in the very early stages – and our hope was that maybe, just maybe, Gavin would get a chance to try this drug when he was entering middle school. Then it was maybe, just maybe around kindergarten or first grade…never, ever did we think that we’d get this kind of news before he even hit preschool!

A major plus for Gavin, our hope is that he’s actually on the medication BEFORE Cystic Fibrosis has any major effects on him. He has never cultured anything more than staph, he has never been on more than a handful of antibiotics, he’s never been on IVs, and he’s never been hospitalized. Because the drug cannot fix previous issues (lung scarring etc) and can only help to prevent them in the future – the fact that we’re starting from nearly a blank slate is AMAZING.

Below is a link to the press release from the FDA

http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm289633.htm

Gavin has been trying to comprehend this news – but because he’s never been “that sick” it’s hard to explain to him what this means to us. He keeps hugging me and telling me he’s excited – but I think the majority of his excitement is because of my own – but in time he’ll understand.

I knew in my gut that 2012 was going to be an amazing year – but I had no idea it would be this amazing before the first month passed.

I will share more news when I get it – but tonight is going to be a CELEBRATION!

Growing Up is Hard to Do

Slowly but surely, nearly all the “babyness” has left my little guy and he’s turned into a full blown kid.

He is quick witted, can tell a funny joke and knows how to get himself out of trouble with a funny phrase or look on his face. While he still needs a snuggle from his mama every now and then, we’re enjoying this new stage of parenting.

Gavin is well into potty training and the only time he wears a diaper now is at nighttime. The other day I forgot to change him back into his diaper before a nap, he stayed dry, so that was that, no more diapers during naps – cannot WAIT to stop buying diapers! I obviously have the necessary parenting pictures of him sitting on the potty – but  I can spare him the embarrassment of posting them online. I’ve never laughed so hard as the day he sat on the potty deep in thought with his LeapPad – apparently the need to do something while doing your business begins at an early age for boys (and I’m pretty sure this is the only time men multi-task ha!).

He’s also getting more accustomed with his new hockey skates. While he is still timid on the ice, his interest in growing up and playing for the Gophers & the Wild is beginning to trump any trepidations.

 

We’ve also received the snow that Gavin was anxiously waiting for – several more inches than the pictures below. And whether he has been watching his daddy use the snow blower from a distance (he cannot wait to “grow up and snow blow!”)

Or if he’s been out helping his daddy shovel (I swear I help too!)

The kid is just plain psyched to have all the fun stuff to play in!

Still cannot believe that we’re only a couple of weeks away from him turning three. Time flies when you’re having fun!

Moganko what?

So here’s the deal. I have this awesome…SERIOUSLY awesome, friend named Josh. Several years ago – not long after Gavin was diagnosed – I felt the need to find some adults living with Cystic Fibrosis. PROOF that life still happened even with this disease. I’m pretty sure we eventually connected after he commented on my blog and I clicked over to his site to see what he was all about (correct me if I’m wrong Josh).

After a few minutes of looking at pictures I realized.

Hey, I know that place he’s standing in!

Hey, he’s wearing a Twin’s jersey.

OMG.

He lives in Minnesota! YES!!!!!!

 

I don’t know why – but “meeting” adults with CF in different states made them…well, real…but not as real as finding someone living on my turf. While I crave the information all of my adult friends have given me – I have an extra sense of love for Josh and our similar love for our home state.

After a couple years of going back and forth online – a missed meeting when Gavin was in a horrible mood (weird) – we finally got to meet face to face at this years Minnesota Cystic Fibrosis Education Day. I also got to meet his wife and mom – both of which were fantastic individuals.

Now here’s the gist of my story, Josh has created a character named Moganko…

 don’t be fooled – it’s really them – just in seriously awesome disguises

Moganko is a puppet that helps kiddos with Cystic Fibrosis understand their disease, what their extra care is for, and why it is so important to keep up with treatments. (But don’t get me wrong – it’s just as much fun to watch as an adult!) Gavin has completely fallen in love with this character. He’s getting old enough to realize that not everyone around him has CF, and seeing someone else go through treatments just like he does has been a huge blessing to our family. Listening to songs/raps about the treatments he does/the medicine he takes/the extra work that is necessary brings a priceless smile to his face. While the life we live may not be normal – Josh & Moganko have helped Gavin realize that he’s not alone and that there are people out there just. like. him.

As a mom, I couldn’t ask for anything better. Life is hard enough – much less with CF – and following Moganko’s journey has made our lives even more enjoyable.

Josh’s goal is to get Moganko teamed up with the Muppets – yep those Muppets - to create awareness for this disease. And we need your help. No, I’m not asking for money – just asking that you take a moment of your time to check out his website

Mogankoforcf.org

AND/OR, take a moment and ‘LIKE’ Moganko for Cystic Fibrosis Awareness on facebook. In both locations, Josh has posted amazing videos, blogs, songs etc. all helping kiddos just like mine live a little more peacefully with this disease. Josh’s goal is to get 2,000 likes on his Facebook page by Thursday as he heads into a (not so secret) meeting that is working toward his goal. Please help him out with a ‘LIKE’ and please SHARE this link on your facebook page. I know my friends will do anything to help my little guy live a long and healthy life – and this is a completely free way to help! Mucho love and thanks in advance!

 

 

On a slightly different note – this year’s Great Strides Walk is on May 5th and we will be walking here in Rochester (vs the Twin Cities in years past). If you would like to walk with us – or walk in a different location – please let me know and I will get you all of the information you need!

Welcome 2012!

So I’m a few days late to welcome in the New Year, but I still cannot believe that 2012 has already arrived. I feel like I blinked and the holidays were over. It didn’t help that I got the awful stomach bug going around just a couple days before Christmas and then Casey getting it on New Years Day. Luckily Gavin never got it – and he had a blast hanging out with his cousins while they were in town

While I was sick in bed, Gavin got to head out on the ice for his first time on skates. He was a little hesitant as his “skates were toooooo big”
(which they were) and the ice was “too slippery!” (duh) but he went out there for the first of many times to come!

And for those of you who noticed the figure skates, no worries – kid just got hooked up with an early birthday present from Grandma & Grandpa Groettum – his first pair of hockey skates! He is beyond excited to get out on the ice again!

If you haven’t caught on. The kid is OBSESSED with hockey. Talks about it constantly. Plays it constantly. Watches it on tv constantly. It has become an evening ritual for a hallway game to begin between dad & son…and it’s an extra bonus when Gavin pulls out his rain boots (which he pretends are skates) and football helmet.

And if that wasn’t enough – lucky kid gets to hang out with his grandpa right in the action during our local high school games

The kid is only two, but already has some major Spartan pride. Guess if we ever move we better stay close to make sure he ends up going to school there!

Also during the holiday break, we took Gavin to see Sesame Street Live. We had second row seats and I don’t think Gavin has ever sat still for that long in his life! He loved the action – but made sure the characters didn’t get too close for comfort :)

Gavin’s other love is “construction work.” Every object can easily turn into a “bammer” (hammer) and when he got a construction guy costume (Melissa and Doug) that came with tools as well as the necessary safety goggles – he was psyched! I let him bang/saw away at a couple pieces of styrofoam from another gift – only to later regret it as I tried to vacuum up a countless number of styrofoam fragments.

I seriously cannot believe that he will be three in just a few weeks. While he still likes to snuggle up with his mama, he’s getting to be such a big boy. He’s funny as heck, talks non stop (wonder where he got that trait from…) and is such a big helper around the house. He is in underwear all day at home – and only wears diapers at night or if we’re busy running around since he has a fear of public toilets – but don’t we all to some extent! :) Last night he informed Casey and me that he would be reading us our nighttime story…

 

For now I’m going to spend the remainder of naptime at our house enjoying the fresh air…yes, fresh air in January. In Minnesota. It’s 50 degrees here and the windows are open. SO surreal. But looks like today is the end of the warm streak so I’ll live it up while I can.