Life has been so busy and overwhelming I just haven’t had the brain capacity to write out a update blog until now! There have been lots of changes since my last blog in October. 

Our trip to Florida could be its own entire blog post but in a very very short summary, Dirk saw no changes good or bad from the trip and the clinic did not inspire a lot of confidence and so we decided to not go back. We felt that there was too much guessing, not enough facts or research and the cost was astronomical in turn for not having that kind of information.

Update on Dirk’s Condition:

Dirk has progressed quite a bit and his progression always seems to hit all at once which causes the need for evaluation of how to continue to care for him. He has lost use of his arms and hands, neck and most of his legs. He can no longer swallow anything besides a small sip of water every once in a while. 

His lungs are much worse and says he feels like he is breathing through a straw. He also expressed struggles exhaling recently and with the deterioration of his neck we’ve had to add in a pretty intense neck brace for when he is being transferred to keep his airway open. We worked with his respiratory therapist to try to adjust his BiPap as he wasn’t able to exhale while wearing it and after several rounds of adjustments has decided no longer to wear it as he sleeps better without it. 

After a few close calls with transferring Dirk he decided it was finally time to move upstairs full time. With the help of family and our small group we transitioned our bedroom into a sitting and sleeping area. I got a day bed in replacement of my queen and have a couch and his recliner up here as well as his hospital bed and a small fridge. We got a TV mounted as well and its now the place the family watches movies and shows together. Its been a big transition and we’ve had to re-work how we do everything but its been really good. We were doing 26-28 transfers per day and now we do a max of 2-4. Dirk says he feel way less anxious with the reduction of transfers and is enjoying getting to look at Mount Rainier from his recliner with his own two eyes again. 

We also recently had to increase Dirk’s pain medications and also introduced some anxiety medications as his anxiety has been pretty high with the new breathing issues. This means giving medications every 4 hours day and night now. 

Update on me:

The life of a full time caregiver is exhausting both physically and emotionally. Sleep these days is rough. Dirk doesn’t sleep much. He needs medications every 4 hours. Additional adjustments and turning on top of that. I’m usually up 6-8 times on normal nights. And emotionally trying to re-think how we adapt to his changes constantly and trying to keep him safe and well cared for. His increase in anxiety has also increased how much he needs my attention as no one understands him as well as I do, and so he is constantly wanting me present and helping communicate for him. Needless to say I’m pretty exhausted most of the time. We do have in-home care 4 mornings per week for 4 hours but with Dirk’s increased anxiety I can’t leave until he is settled in his chair. And with the change of him being upstairs, its harder as someone has to pretty much stay upstairs with him at all times. 

Business update:

I made a big decision to take 2026 off of my photography business. Its a hard choice but also very needed. Its been a tough 3 years and I need some rest and quality time with my girls. I have plans to go back in 2027 but it may look different than it does now and I want to keep my options open. 

Some fun things:

I had a really fun five days with the girls when I came home from Florida. We went to the zoo and aquarium, painted pumpkins, decorated cookies, baked cupcakes, picked the pumpkins from my garden, had several movie nights with the projector and glow in the dark balloons, went to church and processed tomatoes and herbs from the garden.

Over the holidays the girls dressed up as Supergirls for Halloween, we celebrated Thanksgiving at Dirk’s Grandparents, we had a Tinkerbell themed 7th birthday party for Adeline, Adeline’s ballet performed at The Puyallup Fair Victorian Christmas, went to Zoo lights, celebrated Christmas at our house and had a 5 day staycation with Dirk’s family. We got Dirk to church for Adeline singing in the children’s choir before Christmas as well.

In the new year both girls started at a new ballet school and I have to say that watching 3 year olds do ballet is probably the highlight of my week! I celebrated my 36th birthday in January and got to have an afternoon out with my cousin at a Japanese head spa which was glorious! And Dirk celebrated his 35th birthday on February 10th and we had a small family birthday party that was wolf themed (at the girls request).

Prayer Requests:

• Prayers of course that the Lord would heal Dirk. But that if He doesn’t, that he would go peacefully. 
• Prayers for his lungs and that the side effects of loss of lung capacity would be minimal and not scary. 
• Prayers for wisdom as we continue to care for Dirk.
• We are in need of a new shower chair and are struggling with insurance and different things. Prayers that the ALS association would come through with a loaner quickly. 
• Prayers for those caring for Dirk for strength, sleep and stamina. 

And as always, some photos: