Monday, January 29, 2018


One more week until my first post-loading-dosage treatment! Medically speaking, my life has been pretty quiet for the last three months, which I am incredibly thankful for. There's been no more swelling or leaking. I've dealt with some sciatic nerve pain, but that is improving with stretches and a new seat cushion.

The big question people constantly ask me is: Do you notice any improvements or change? It's hard for me to identify specific things, but others have told me that my neck seems stronger and I'm able to bend my arms easier.

Over Christmas break, I tested my ability with some hand-crafted projects: a cross-stitch "baby's first Christmas" ornament for my darling baby niece, Josie, and this nifty crochet hat for Kevan, which he said reminds him of old-school John Reuben:

I was pleased that I was able to complete both projects, and in a matter of days instead of weeks. I haven't been able to do these kinds of projects for about three years. One thing that made me laugh is that while I was working on them, my eyes got tired before my hands did! Being able to do these things is a huge encouragement to me, because it means my fingers, wrists, and arms are getting stronger. I am so thankful to be able to use my hands to create things that are beautiful and useful.

Tuesday, December 5, 2017

"Every breath you take is a miracle!"

"How's your breathing these days?" It may seem strange, but this is a pretty typical catching-up question between my friend Anna and I when we hang out... just two little asthmatic chicks looking out for each other. When she asked me last week, I kind of frowned and had to think about it for a minute, trying to recall the last time I woke up congested and rattling, the last asthma attack, or the last major aspiration I've had during a meal. 

But it's been a while. 

In fact, digging through my purse the other day, I found my ProAir inhaler and realized I haven't used it in over a month... a month! For the past couple years, I've gotten used to needing a couple puffs at least once a week. The weather here has been nuts lately, too - dramatic warm/cold/dry/damp conditions that usually aggravate my lungs all the more. So this season of good health can't just be a fluke, can it? 

For the past few days, I've found myself escaping the hectic buzz around me by just taking a slow and deep breath in, and enjoying the clarity, silence, and even strength of it... and then letting it all exhale, just to let another full dose of oxygen fill me again. It sounds crazy, I know, but I think my lungs are actually getting stronger. I think Spinraza is helping to rebuild my respiratory/pulmonary functions - a part of my system that has caused the greatest concern and fear in my life over the past 25 years. 

About 20 months ago, Kevan introduced me to a new song by Switchfoot called "Live It Well." The opening lines are incredibly relevant and powerful, especially to kids like Kevan and I: 

"Take the burden from my arms, 
Take the anchors off my lungs, 
Take me broken and make me one, 
Take the silence and make it a song..." 

We know what those burdens, that brokenness feels like, beyond the metaphorical... that invisible weight of gravity that holds down our arms, and the anchors that press on our lungs. Those lyrics became a deep and resilient prayer in my heart. Before a treatment called Spinraza was announced, a seed of hope grew in me... that somehow the Lord would lift these burdens so we could breathe deep and free, so we could move without restraint. And I think he is answering that prayer. 

"Life is short, I want to live it well,
One life, one story to tell
Life is short, I want to live it well,
And You're the One I'm livin' for
Awaken, O my soul, 
Every breath that you take is a miracle..." 

Thursday, October 26, 2017

Two things tires and Connies shouldn't do

...swell and leak. 

Unfortunately, most of my energy this week has been spent doing these two things. My new surgical incision started seeping at varying intervals and in varying quantities, and my back got pretty swollen and sore, too. I went through quite a bit of sterile gauze, paper tape, Tylenol, and ice packs. When I was up, I wore a back brace like a corset, and when I didn't have to be up, I was laying flat on my bed. When I was at my best, I was praying and singing praise songs, and when I wasn't, I was racking my brain for what else I could do to make the healing process more successful. It was difficult. 

My one-week check-up last Thursday was quite a long, confusing, and exhausting mixed bag, but the best thing that came out of that time was that I was able to get my last loading dose (#4) of Spinraza! So I don't need another one for four more months - that's February, people. Praying that we'll get to see some good progress in the meantime. If I do, I'll be sure to report it right here, so stay tuned!

My two-week check-up today was much shorter and sweeter. I got my stitches out, and miraculously (seriously, it's a miracle) my back has stopped swelling and leaking, and is looking much more normal... well, whatever my "normal" means. So I got the A-OK from the nurse - no more gauze, no more corsets, no more bed rest. To me, this was great news... it means maybe, just maybe I can get back to really living my life. 

Which is a good thing, because tires and Connies are meant to move... there are so many places to go, people to see, and things to do! Look out world, here I come (again)!