Adventures In Larsonland

Adventures In Larsonland

Wednesday, February 18, 2015

My current thoughts on Cystic Fibrosis

It's always a struggle for me when I think about how much I really want to know about Avery's disease. How much is enough for now? How much is too much? Frankly, Cystic Fibrosis is a very complicated, complex disease, and it's a scary one. It scares me a lot, but I'm the mom so I don't want Avery to know that.

Last night, Matt and I attended our first "function" with the Colorado Chapter of the Cystic Fibrosis Foundation.  In the six months since Avery's diagnosis, we've really only been able to talk with our CF clinic staff (who are fabulous) and one other mom of a 12 year old daughter with CF.  And realistically, we still know very little about what we're facing, or rather, what Avery is facing. But last night was good spending time with people who know what we're going through all too well. Plus, we learned more about vests, we learned more about other families' experiences, we learned more about the science of the disease, and we learned a whole lot about current and future care for people with CF. It was a lot to take in.

Sweet Avery, I wanted to write down my thoughts from last night, because I hope someday you'll read these and celebrate just how far you, our family, science have come. I hope you are reading these words with clear lungs, with a strong and healthy body, and with the memories of all your hardships fading into the past. I'm not sure if that will be the case, but I pray it every day for you.

Avery, right now there is much to be celebrated in the world of CF research. There are a small percentage of CF patients who are actually getting better! There was a new drug approved recently (Kalydeco) which has helped people with a certain mutation, and it's been life-changing. We've heard stories about how people feel differently (more powerful, alive!) even after just ONE pill. It's a miracle.  Unfortunately, this treatment doesn't work for you, so we wait and pray that something similar will come along someday for you.  We don't know when that will be, but we pray it will be soon.  There is no real "cure" for the damage that CF does to your body, but a cure will be found when smart people can figure out how to edit your DNA to make your cells work correctly.  It's a crazy idea, but we hope for you and the 30,000 other people in our country with CF that it can be done.

At the event last night, we were able to rejoice with those who have been able to see improvement on Kalydeco (while silently mourning that you cannot be on it). We also learned that there are a few other drugs being worked on right now that they hope will help other patients with different mutations.  Unfortunately, you've got two different mutations, so we're waiting for two different types of miracles... but we'll wait with lots of hope. We know it may be a long wait, and an expensive wait (Kalydeco cost Billions of dollars), but we'll do everything we can to get there. 

Avery, I'm so heartbroken that your body is working against you.  The weird thing, is that your body is actually the one destroying its own lungs.  It is the hardest thing to do as a parent: watching your child's body function incorrectly knowing that it will only get worse and that you can't really do anything about it. And I can't explain why our loving God allows these kinds of things to happen.  But yet we trust and hope and love. And we know that you are a true gift. And while we are so sad to know that your life will be filled with machines, drugs, hospital visits, research trials, sickness, likely lung transplants, and constant monitoring, we know that you will bless so many people with your experiences, courage and wonderful heart.

We are also sad that this disease is so isolating. There weren't any people with CF at the event last night, and you'll never be able to play with a friend who has CF. And to me, this just seems cruel. Like everything else about CF isn't cruel enough. 

I hope when you are reading this that the CF world has changed dramatically. I hope you read with the joy of knowing answers have been found. But regardless, I hope you read this knowing that you are SO loved, and that while are hearts are broken, they are overflowing with love for you and your life. And though you may see your mama tear up from time to time, know that I want to be strong for you and with you. And that I love you.

Monday, February 16, 2015

Avery: Six Months and Church Dedication Pics!

Dearest Avery,

You are SIX months old this month!! I can't believe how quickly the time has flown... you still feel like my sweet little newborn that surprised us with an earlier-than-expected arrival. Maybe I'm still just in shock mode :)




You've grown a lot this month, both literally and figuratively.  You definitely had a growth spurt shortly after your surgery in January, and you even jumped up to the 10th percentile for weight at your last CF clinic visit! (Mom forgot to schedule your 6 month checkup on time, so we don't have that til the end of the month - we're hoping the weight gain continues!) Your cheeks are filling out just like your brother's did, and your personality is really starting to shine through :)


You're still a little "behind" when compared to the general developmental milestones, but we're chalking that up to your body just working so hard to grow/adapt those first few months... or maybe you just don't feel like growing up too quickly, which is fine by me.  You don't sit on your own or roll over much (though we have gotten you to roll a few times onto your back during tummy time, because you still HATE being on your tummy!). I'm anxious for you to keep growing and start surprising us with all your cool tricks, but I know it may be awhile, and you can take your sweet time.  But you did finally lift your head up off the ground this past month, and though you don't like doing it much at all, we did love seeing it happen!


Other things about you lately:

You still LOVE your brother, though you've added daddy into the mix of favorite people.  Whenever either of them come over to you or start playing with you, your eyes just beam with joy. It melts my heart! (You especially love reading with the two of them, but mostly you just stare at Benjamin the whole time, hehe.) And your brother loves helping out still, he helps you play with toys, talks with you, and brings your mom diapers when needed. We're thankful for that!









You make silly sounds! You love to make a raspberry sound with your lips, and you seem to "talk" in silly nasaly sounds, but it's fun to hear you when you do! We're still waiting to hear real giggles, but it's fun to see you try. ;) Here's a video of you "laughing" in your own silent way:


You and your brother share a room, for real finally! You've been taking all your naps and overnight sleeps in your crib next to your brother's big boy bed, and for the most part, you two do great together.  You often wake up a lot after 4am, so by 5:30am, I pull you into our bed to finish your snoozing til about 7/7:30am. But we're happy you like your crib so far.
Pardon the pirate sword on the ground, I realize that looks a bit scary!

You're eating like a champ these days, but your nutritionist said to keep you mainly on fruits for now since they have more calories, so you haven't ventured too far into veggies just yet! It's just fun to see you get excited about a spoon of pears or mangoes. :) You're still on four capsules of enzymes before each meal, but the doctor said we may increase that at the end of the month since you're growing so well.

Still love to smile!



You love seeing buddies or hanging out with people you love!





This past weekend was your dedication at church, and we were so blessed to share the dedication ceremony with some good buddies (Carter, Natalie, and Felix). These are our people, so they're your people too! We are so thankful for such a wonderful church to call home and for the wonderful people that make it what it is.  We feel it filled and overflowing with God's love, which we hope you can find in a church someday too!  Daddy also got to lead worship at church that day, so it was fun to have our family and friends there for the whole service. Even the Kozlowskis and Turrills showed up to share in your day!  (Miss Mackenzie even brought her camera and took a few photos for us, lucky us!!!) We know you are SO loved, sweet girl. Mama even cried during the dedication - I'm such a wimp!  (PS - your brother and Adele stole the spotlight at the dedication being all cute and holding hands... I'm sure you and Felix will get them back someday!)






















Video of the dedication:












After the service we had a brunch back at our house for all the families. It was fun to have everyone together, and it was extra wonderful that we had such great weather. You are so loved sweet girl, and we know that you are a gift from God. He made you just the way you're supposed to be, and we are thankful for the community that exists around us to help love on you too!  We hope we can always be good stewards of God's love in your life and in our family. <3 p="">





























Avery missed almost the entire party because she napped...




















We love you!