I had a few people ask recently about updates with us and though I’d write a new blog. Essentially – we don’t have much to update, which I see as good. 

As I’ve previously mentioned, currently our day to day is pretty normal. Dirk still works from home (And actually got a promotion last week! Praise the Lord!) and has yet to be inhibited in his daily tasks physically by his disease progression. The only thing that has started to become challenging is being understood by strangers via telephone or through a speaker box (like ordering fast food) if he’s having a bad speech day. His speech often varies day to day and sleep and overactivity impact it as well.

Update on his symptoms:

• I haven’t noticed a huge change in his speech lately and am attributing that to the drugs he is taking slowing the progression. He started Nudexta for the pseudo bulbar palsy to help with uncontrolled laughter and the drug has shown to actually help with the bulbar symptoms a little bit, especially when first taken. 
• Nudexta has helped quite a bit with the uncontrolled laughter and he just seems like himself. We were concerned it might overly numb his feelings, but he’s still pretty easy to make laugh while not feeling like its not completely uncontrolled. 
• He can still eat pretty much everything but just takes a bit longer to eat. Anything mushy that sticks to the roof of your mouth is challenging but mostly because his tongue doesn’t function as well as it once did. He is still only choking on water occasionally but hasn’t choked on anything else. 
• He is definitely feeling more weakness in his arms and hands but not enough yet to affect him doing anything besides maybe becoming tired more quickly. He also recently said his legs feel wobbly in the mornings. 
• His recent cold around Christmas thankfully didn’t develop fully into the respiratory symptoms the rest of us had, but he does think it had a bit of an impact on his lungs. He is a little more out of breath than previously and we are starting to be cautious to guard him from overexertion like climbing too many stairs holding a child…etc. 
• The biggest symptom we have probably noticed is his energy levels. He gets tired more quickly and if he can take a nap on a busy day he does. Recently when on vacation and we were more active he took a nap almost everyday. 

Thankfully he’s doing great keeping on weight and has actually gained a few pounds! We’ve introduced some protein drinks and lots of snacking throughout the day and always say yes to dessert.🙂 

We are so thankful for good medical insurance and an amazing employer who wants to make sure that medical insurance stays available for us even after he stops working for them (what an amazing answer to a prayer we didn’t even have to pray!)! For example, we refilled one drug, Nudexta, today. Even after insurance coverage a 30-day supply is $1,553. Thankfully our deductible is only $3500 for the year which obviously we will hit in no time.

We had a fun vacation to Suncadia in early January with Dirk’s entire immediate family (His parents, 6 siblings, their spouses and kids), totaling 18 people in one house together! It was a blast. Lots of games, crocheting, playing in the snow, eating, lego building and laughter. Lots of amazing memories were made. 

We have some birthday trips planned in the next few weeks. For my birthday Dirk booked a weekend away for just the two of us on Bainbridge Island. And for his birthday I booked a few days at Seabrook for us and the kids. We’ve found its really encouraging to have some fun things planned out in the next month or so to look forward to!

I know lots of people keep asking how they can help us. And honestly, right now your prayers and encouraging words are amazing! We know a day is coming when we will need more help physically but that day has not arrived yet and hope it doesn’t for quite a while! 

Prayer requests: 

• A slow disease progression or even a miraculous remission! 
• Specifically a slow progression in his lungs. The disease doesn’t commonly “jump” around the body or skip areas but occasionally it does. And so if anything, if it moved on from affecting his lungs it would buy us more time with him. 
• Wisdom as we pursue moving. We would like to be closer to the rest of our family as well as our church in Puyallup but finding a multi-generational home for us and my parents that is a right fit has proved challenging. We are also dealing with a complicated timeline of selling both houses as well as a pretty crappy housing market at the moment. So lots of wisdom in what to buy, timing and finances of it all! 
• Continued prayers that he wouldn’t aspirate food or water into his lungs.
• Praise! That so far his stomach has tolerated all of the drugs well! Pray this continues.
• Praise! That he is maintaining and even gaining weight! Pray this continues. 

And for fun, a few photos of life lately: