Fall

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It’s amazing how a small thing like having a baby will limit your time for all non-essential activities, including blogging. It feels like just yesterday we were enjoying the last, long, warm days of summer. Hard to believe it will be November in two days. A lot has happened in the last couple of months.

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At the park. In short sleeves. Must have been July.

Lucas has had a great start to second grade! He’s growing in different ways and learning a ton. We love his teacher this year. Lucas’s first grade teacher was great too but his teacher’s approach to homework this year is so much better for us. Last year we would get a packet on Friday which was due the following Thursday. We are just not the kind of people who are good about doing a little bit each night. We were constantly realizing it was Wednesday and we hadn’t started even the first page. It made for a lot of long, unpleasant nights. This year his teacher sends home one page of homework every night. It’s so much more manageable and Lucas has even realized he doesn’t hate math. Lucas’s three best friends from school all ended up in his class which has been great for him too. Earlier this week he programmed a video game in his technology class. A couple weeks ago his class went on a field trip to the botanical gardens. It’s been a great year so far!

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“Dad, you don’t have to walk me to the bus stop anymore.”

Lucas has been playing a lot of soccer! He just finished the fall season with his school’s rec & ed team. He’s played with most of those boys since kindergarten and it’s been fun to be part of that community over the last three years. He also joined the travel club that I coach for this past August. It has been a really different experience for him but he’s learning a lot and has had fun wearing a real uniform and playing in a legit tournament (we took second place!). We finish up our fall season this weekend!

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We play a lot of soccer.

Alena is seven months old which blows my mind. She has become so interactive recently. You forget how much and how quickly they change when your kids are almost eight years apart. I came home one day and she was sitting up all by herself. Now she’s trying to pull herself up on furniture. Crazy. Alena definitely seems to be an extrovert. She is energized when she is around people. She always has a smile for people, even strangers (Lucas would always hide his face…he still sort of does, haha).

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At Trader Joe’s. On the lookout for new friends.

Alena is trying solid foods. So far the experiment has been met with mixed reactions. Alena loves her big brother. She is always excited when he gets home from school and she loves to sit on the floor and watch him play. Lucas loves to make her laugh!

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Sibling love

Alena needs remarkably little sleep. I guess I am to blame for that. I tend to be more of a night owl and function pretty well on five or six hours. Alena sleeps more than that (don’t worry) but her naps have been inconsistent and recently she’s been more wakeful at night too. It feels like she just doesn’t want to miss out on anything. She’s growing and happy so I guess it’s not a huge problem (apart from the fact her parents are buying a lot more coffee than usual).

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Who’s got time for sleep? (Photo taken at 4:21 AM)

One of the biggest developments of the past few months is that Betsy was approved to start taking a new drug aimed at the underlying cause of cystic fibrosis. There has been a lot of scientific breakthroughs over the last several years but until now, the new treatments didn’t work for people with Betsy’s genetic mutation. We knew that this new drug was in the pipeline but thought it would still be six to twelve months before it would be available to patients. Sometime in September, though, we got a call from the doctor saying she could apply to start the new drug early. She was approved in October! We had to frantically work out a few logistics, namely how to wean Alena. Initially, we were under the impression that Betsy would have to stop nursing the baby but thankfully after a few different consultations, we determined that reducing the feedings and supplementing with formula would be sufficient. Whew. Betsy has been on the new drug for less than two weeks but I don’t think using the words “life-changing” is an exaggeration. Her symptoms are greatly reduced. She doesn’t spend the first three hours of her day coughing. The other day, Betsy carried the baby and a basket of laundry up from the basement and didn’t feel overly winded. She is starting to exercise again. It’s remarkable. I am sure Betsy will write more about this but we are so thankful for this new development. It feels like we’ve gone back to a time when her disease seemed more like a footnote rather than the essay itself.

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Living her best life.

For years we have been participating in the Cystic Fibrosis Foundation’s Great Strides campaign. The sole purpose is to raise funds for cystic fibrosis research. This new drug is a direct result of that research. We are so thankful for our good friends, Ross and Deb, who organize our Great Strides team every year. We are so thankful for everyone (many of you who are reading this) who has ever donated money to the Great Strides campaign. Every single dollar contributed has led to this medical breakthrough. We are so thankful for the scientists who are doing this important work. And it’s not done. The Cystic Fibrosis Foundation has recently unveiled a new research agenda to continue the development of treatments for every person with cystic fibrosis with an end goal of finding a cure for the disease. It actually feels like this could happen within Betsy’s lifetime.

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Great Strides 2019

So that has been our fall! We are excited, tired, and thankful but above all, our hearts are full of hope.

4 thoughts on “Fall

  1. Debbie

    What words are there to describe the joy your family brings to me and the joy I feel knowing that the breakthrough we have been praying for has not only become available but is something that actually is working for Betsy. My heart is full with praises for all things seen and unseen!

  2. Kelly

    Yes! I am thrilled to hear how much better Betsy feels in this new medication!! Thank you Lord!
    And the kids are adorable, of course. Even at 4:00 in the morning! 😁

  3. Bill & Mary Roedema

    Hooray! Praise the LORD! We’ve been hoping and praying Betsy could benefit from the new drug we heard about. Thank you for the update and the pics!

    Your friends, Bill and Mary Roedema

    _____

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