Happy New Year! I realize it’s March but it’s the first blog post of the new year and better late than never, right? Kind of my philosophy in life if I’m being honest. Anyway, I hope your 2020 is off to a great start!
The new year started off with more good news! Betsy has another follow up appointment with her pulmonary specialist on January 3. Her FEV1 was up again, this time to 43! That’s a 14 point gain and is nearly up to the same level as when Betsy started this blog. Nobody really new how much of an effect the Trikafta would have on her FEV1. There hadn’t been any patients in the test groups with starting FEV1 scores as low as Betsy’s. Needless to say she was thrilled. The doctor was even cautiously optimistic that she could still see more improvement, especially after she is able to resume consistent exercise.
Even more than the breathing test score itself, the change in Betsy’s day-to-day life is more than evident. Coughing for hours on end to start the day is a thing of the past. Betsy has been bound and determined to reclaim some of the household duties. She has implemented a new laundry system and, amazingly, we now retrieve clean clothes from our drawers rather than the laundry basket. Betsy and I are back to sharing the grocery shopping and the cooking! Last weekend, we had been toying with the idea of moving a desk up from the basement for Lucas to use. We’d get to it later, I thought. I had to run out briefly and in the 20 minutes that I was gone, she managed to carry up a desk from the basement and rearrange the furniture in the dining room. This is the kind of shenanigans Betsy would have attempted on a regular basis ten years ago. The “just do it” part of her personality had been suppressed for a long time out of necessity. No longer.
In other news, Alena continues to give us a run for our money! I can’t even believe I’m writing this but she will be one year old in just two weeks! She’s been trying to walk for about five months now. One of her favorite activities is grabbing the hands of whoever is closest and dragging them around the house! But just prior to her ten month birthday, she started taking solo steps and now she walks unassisted whenever the mood strikes. Alena is starting to talk as well. She says “mum” quite clearly and intentionally. Not sure where she got the British accent but there you go. She calls Lucas “baa” and if she wants to be in your arms she’ll say “up”. Nothing resembling “dadda” as yet. She calls the much beloved squirrels she sees out and about “pwa” and any human being, regardless of age, is “baby.” Alena’s sleep has been super irregular, but she’s awfully cute so we’ll call it even.
Lucas is really enjoying second grade. He loves his teacher and has some of his best friends from school in his class. He’s a great big brother. He loves to make Alena laugh. He’s (almost) always willing to give her one of his toys or share the iPad. The other day I was trying to get dinner ready and had stuck her in the pack ‘n play. Alena found this arrangement to be suboptimal and was voicing her opinion. So Lucas climbed in with her and started to play with her. He’s also become a very big Star Wars fan over the last few months. He watched all eight movies in the lead up to the holidays just in time for us to see The Rise of Skywalker in the theater. Now he spends his free time making up his own Star Wars movies. I’m hoping one day he’ll sell the rights to his namesake George (Lucas) and use the proceeds to fund my retirement.
Well, only a short time until spring now! I’m looking forward to the warmer days and being outside. I’m also subconsciously preparing myself for all of the plans that Trikafta Betsy will undoubtedly have in mind for us to do. 😉 It’s going to be a great spring!