A blog trail of our adventures as a family; learning, laughing, and loving as we go. It is also a look at our daughter's (and family's) journey with Cystic Fibrosis.
But the better part of this story is that Matt's grandparents (B & A's Great Grandparents, if you will), came out to visit! It was so nice of them to drive out here from Minnesota, we're so blessed that they were able to make it. They of course put the hard court press on us to move back to Minnesota where the family support would be abundant... and darn it if that doesn't just sound so amazing to us when I'm trying to cram work into every spare minute I have (or while Benjamin is watching Bubble Guppies... :-/). Thankfully, Mimi will be out here in just a few short days!
Here are a few pictures from their visit (I was busy with a few photoshoots, so I didn't take as many pictures as I'd like, but trust me - Benjamin had a ball!):
{Oh, and back to the pergola... Matt's handy Grandpa Jack drew up plans for us and we had my dad come down for some extra hands, and those three guys got the pergola built in two days (in the rain!).}
(This is what I was doing during all this manual labor:)
We also got to attend the very first church service at our new building in Uptown! It was awesome and we are so happy that it's open. :)
Avery sported the handband that Auntie Emma sent to offset the manly onesie we had her in for the Broncos game :)
And the boys still worked, rain and all:
Benjamin put his shoes on himself... you may notice they are on the wrong feet.
Meanwhile...
And this is how Benjamin spent his naptime... it was far too entertaining outside to take a nap!
It's done!
Testing out the setup:
Grandpa Jack even put together a play workbench for Benjamin with some of the scraps!
And we enjoyed one last meal together:
We love them so much and are so grateful we got to spend time together!
A few weeks ago we sent out the below email to our friends and family letting them know what we know about Cystic Fibrosis and Avery. We don't know much about how this disease will affect her in the long-term, but we do know some general things for now about what's to come. I thought I'd post it here since this place is like our time capsule and I hope to look back many years from now and give CF the old middle finger when some genius scientists and doctors have figured out how to keep it from stealing the lives of its victims. Won't that be fun?
{Also, a friend shared this video with me, and it is one of the most amazing things I've seen. If you know me, you know I already have an affinity for the band OneRepublic, not only because I do like their music, but also because they're based in DENVER. :) Well who knew that one of their most beautiful songs would be set to a video with a child who has CF! And not just that, but they let this sweet teenager talk about his disease and fears, and you get to watch him do his vest treatments and nebulizer. You also get to watch him riding his bike through gorgeous Colorado scenery and make visits to our very own CF Center at the Children's Hospital here in Denver. Please watch this video for a look at someone living with CF. Nevermind that the lyrics are ridiculously beautiful and something that I pray for Avery everyday. I've watched it several times and cried the whole way through each time. Thank you OneRepublic for bringing awareness to this disease!}
***
Dear Friends and Family,
Our family wants to thank you SO much for all the love and care you've shown us in the past month. It would be a lie for us to say that it's been easy - in fact, it's been the hardest month of our lives. Cystic Fibrosis can be isolating for both the patient and the parents/family in many ways (much like other diseases), and at times we're finding that to be true. Unfortunately, CF patients are not supposed to come in contact with one another due to the high risk of dangerous bacteria being shared, so Avery will never have any friends with her same condition or lifestyle, which will be particularly isolating for her. I know for tweens and teens this can be especially difficult. But we are thankful to have spoken with other parents and read blogs/stories sent to us by others and know that we are not alone in this journey. We know there are resources for support.
We are in this for the LONG haul, and now we just move forward with good people and care around us and a strong God behind us.
We wanted to send out an email with some general information about what moving forward is going to look like for both Avery and our family (and you, as our friends and family!). #ittakesavillage :) Many of you have asked to know more about this disease and how it will present itself or change our daily lives, or how it may impact your relationship with her. I hope this email will be helpful for you, but please don't ever hesitate to ask us questions if you have them! We're always learning more and more, too.
For Avery, we don't know exactly what her path looks like as we haven't been through a sickness with her (and hopefully won't for a long time), nor what her lung function will look like as she grows. {More on the actual science of CF below} We do know that the particular form of CF that she has makes her unable to digest food on her own and that her pancreas will eventually shut down that function. We also know that the pancreas issues will likely lead to her getting a "special" version of diabetes at some point in life. For most patients, this will result in needing an insulin pump.
Here are a few other things we wanted to share:
* Cystic Fibrosis is NOT contagious. I know most of you know this, but we just want to be clear that this is a genetic disease and none of your kiddos will get sick because of Avery. She is not "fragile" nor mentally impaired, and we hope she's treated much like all her buddies and friends around her with the exception of being extra careful in keeping her from getting sick.
* Catching a cold or bacterial infection in her lungs is our #1 enemy. For this reason, we will be asking everyone in contact with her wash their hands regularly or use hand sanitizer. What can be harmless for most of us could be something deadly for her. And while asking strangers to use hand sanitizer is not something I'm looking forward to (I mean, we let Benjamin eat off the ground!), I know that it's a small thing that makes a big difference. We also ask that you let us know if you feel an illness coming on so we can perhaps reschedule our get-togethers. We've been encouraged to be diligent about this when we can.
* Avery's daily regimen currently consists of enzymes before each feeding, a special multivitamin (that she hates!), extra salt poured into her food, and twice daily chest physiotherapy. Near the age of four, Avery will adopt the additional lifelong routines that include inhaled drugs via a nebulizer (likely twice daily) and vest therapy that will replace our manual chest physiotherapy (likely twice daily for 30 min at a time). Each of these things will be adjusted during bouts with colds or bacterias, and if she can't get rid of bacteria on her own, she will likely be hospitalized until she can. We expect this to happen occasionally though hope it happens as little as possible. There are many other complications from the disease, but we hope to never face those though will with bravery should we have to.
* Avery will be visiting the CF Center at Children's Hospital about once a month for awhile and then will transition to once every 3 months (for the rest of her life). There they test her lung strength and take cultures to make sure she doesn't have any bad bacterias (among other things).
* Avery will need to be athletic! Physical activity helps keep the lungs healthy, so all CF patients are encouraged to be athletic (which is why you often hear about them being marathon runners!). Cardio activity is actually like a medicine/therapy for them! Matt is hoping Avery takes up a love for soccer like her brother already has :)
* Avery will always need to avoid smoke. For those that smoke, we ask that you don't smoke near her and try to not wear the same shirt around her that you've been smoking in (the smoke particles can still be dangerous). Again, this is related to keeping her lungs healthy.
* Avery will always be on a high-fat, high-calorie, high-salt diet! What?! That is the exact opposite of the diet needed by everyone else in our household :) But, due to the digestion issues caused by CF, this type of diet will help her grow and stay strong. So if you see her eating fatty, high-calorie, salty foods... well, don't judge us. That's doctors orders!
* The average life expectancy for people with CF has increased dramatically over the past decade. It currently sits in the 40s, and we hope that we don't even have to talk about shorter life expectancy issues someday.
* If you ever feel the desire to research CF, please only use www.cff.org as a credible source, otherwise you may find some pretty scary stuff that may or may not be reliable. This has been advised of us by our team at the CF Center.
{And now, the science of it all (skip this part if you don't need the nitty-gritty): Cystic Fibrosis is a life-threatening genetic disease that primarily affects the lungs and digestive system. An estimated 30,000 children and adults in the United States (70,000 worldwide) have CF, which technically makes it a "rare" disease. In people with CF, a defective gene and its protein product (called the CFTR protein) cause the body to produce unusually thick, sticky mucus that clogs the lungs and can lead to to life-threatening lung infections, and in many, the need for a lung transplant. There are a number of different gene mutations (over 1,900) that can cause CF and each affects the function of the CFTR protein in different ways and can result in different severity levels of symptoms - this means that each patient has a very unique version of the disease. Avery's two gene mutations are DF580 (the most common mutation that over 70% of people with CF have and generally presents itself in a less-severe form of CF) and W1282X (which occurs in about 5% of CF cases and is associated with more severe lung issues). We don't know exactly how this combination will present itself in terms of severity, though we know she will have to fight the symptoms of both mutations as opposed to patients with only one type of mutation. We have been encouraged that there are some drugs on the horizon that address these mutations specifically, and the CF Foundation continues to fund research that will hopefully transform the disease. Prayers are always needed that this happens!} There's a lot of information about CF and drugs in the pipeline at www.cff.org.
Thank you again for all of your continued love and support. We'll always need it through this journey. Again, we don't know what to expect for Avery's life, but we want to fill it with LOTS of love and wonderful experiences. Disney World, we're coming for you as soon as she's old enough! :)
Happy two month birthday! We're so thankful to have you in our lives, each and every day we're thankful. Our life has been turned upside down in many ways, but we know that it's only been made better with you here.
The past month has gotten a little easier on everyone - you're a little less fussy, a little less sleepy, and a little more smiley. :) You're still a super tiny peanut and not quite fitting into your 0-3 months clothes (but I still put you in them anyway).
We've had a good time getting to know you this past month! Your eyes grow wider each day and it's so fun getting to see you explore the world. I have to admit that we have no semblance of a routine or anything remotely close to one the way we did with Benjamin - I guess he'll probably always be a Type A and you won't! But speaking of your brother, he loves you dearly, and we are SO thankful for that! He give you kisses, sings you songs, reads to you and helps your mom and dad get burp cloths and diapers when we need them. You're one lucky lady!
You still snooze a lot, but it's harder to keep you snoozing while out and about these days!
You did finally visit your namesake brewery last month! We got you a onesie :)
And you finally smiled!! On your seven week birthday you finally gave me a few real grins... they didn't happen much after that for another week or so, and even still, we have to work extra hard to see them!
You took your first bath with your brother, and he thinks it's just about the coolest thing ever. Now he only wants to take baths if you can join in to play!
Did I mention that you're super cute??
You made your first trip to church with us (and cried most of the time, so I had to take you to the back room!). Daddy was playing on the worship team that day, so it was fun that you got to watch him play for a bit!
Your friend Holden lent you his swing, and you LOVE it! It is maybe your favorite place in the house now. You especially love the mobile at the top and love watching the little birdies go around.
You visited the mountains for the first time last week while we were on a Supper Group mountain getaway! (That's you in the baby carrier on daddy - he was a rockstar carrying you AND your brother around for awhile!)
You LOVE your Mimi - she was visiting last week and she could get you to smile more than anyone!
You still love cozying up on my chest at all times of the day!
And you still sleep in your Rock-n-Play in our room... You've given us a few six hour stretches at night which we are very grateful for, but we are definitely looking forward to the day that you can start snoozing in your crib in your room with Benjamin!
This was a hilarious picture as Benjamin was getting ready for bed - he came up to you while you were sad and said "Mom, why is Avery crying? Because I'm running away so fast?". He kept doing it over and over thinking you'd eventually like how fast he was funning. Silly kiddo!
But seriously, look at how much he loves you! I can't wait to see you two become such awesome buds as you get older.
You enjoy a good snooze with mom or dad on the couch...
And you visited our new church building with us this past weekend! It's fun to see where you'll grow up!
Did I mention how much you love your brother (and your swing)?
Sweet girl, you are just too precious!
We met up with Mackenzie this past weekend in Boulder to get a few pictures of our family since I'm hardly ever in a picture! She got some amazing shots and I can't wait to see them all! She sent me this sneak peek and I think it's almost my favorite picture ever. Look how sweet you are!
You've been doing great growing sweet girl, but unfortunately you did catch a cold this past week. Your coughing got a little worse, so your CF docs put you on antibiotics and increased CPT to help keep your lungs free of infection. This will probably be a routine thing in your life, so we're just starting the journey. I hope you know we'll do anything for you!
Thank you for being a part of our lives, Avery. We love you so very much!
