I’ve been a bit MIA lately as we have been busy! 

At the end of October we went to Arizona for 10 days with my family. My parents rented a house for us all to stay in and we got to spend some precious time together. My brother recently moved to Arizona so it was good to get to see them.

Dirk flew home for a day to get a lung test which resulted positively with a score of 99% function which was better than we anticipated. This lung test was to get a baseline for where his lung functions are at for future monitoring and it was also required for 2 of the ALS drugs. His lung function is very important in the aspect of that we need to keep an eye on it to make sure any surgeries he might need (like a feeding tube) would happen while his lungs could still handle it.

He then flew back to Arizona to join us and then we shortly flew straight to Maui where we were joined by almost all of his family! We got to spend 9 days together with them adventuring and relaxing. Dirk and his Dad got to rent motorcycles for a day (and then took me out to dinner on it!) and they also got to do surfing lessons too.

Once his family left we spent another 7 days together just as our little family of four spending some sweet time together. And then we were joined by two families from our small group for another amazing week in Maui before coming back home. (Thanks to Dirk’s mom for snapping the photos below of us!).

It was such a sweet time with friends and family and a great distraction from real life for a little while! We came home and unfortunately almost immediately got hit with Covid (we avoided it for 2.5 years!!!) and are just on the mend now. Thankfully we didn’t get hit too hard and just had a few rough days of fevers and headaches but that meant staying home for Thanksgiving  events and me getting behind on my work. We also had to postpone a few doctors appointments because of it too.

We did get approval for Relyvrio (also known as AMX0035) and it arrived today! Prayers his body handles it well and it doesn’t have any side effects and works well. We are still waiting on insurance approval for Radicava. 

He also had a more intensive swallow study today to check where he is at and make sure he is not aspirating anything and it came back normal which is a huge praise! They said if he hadn’t told them he has ALS they wouldn’t have seen any sign of it via his swallowing.

He got into the ALS clinic at UW and begins that the second week of December. UW offers a once a month clinic where you go from 8am-12pm and have all of your appointments in one day rather than spaced out randomly throughout the month. This will be nice to just keep everything straight and less traveling to Seattle. It will also be nice emotionally as doctor appointment days are draining.

Several people have asked if the medications he is taking are working. It is a very hard thing to address as we cannot really measure how quickly the disease is progressing besides the ALS scale which isn’t very specific. Also, he got diagnosed and on medications so quickly we didn’t really see how it was progressing before starting on meds. You could say between March 2022 and October 2022 he lost 4 points as we first noticed his speech changes in March and October was the first time he took the ALS scale quiz and out of 48 pointes he scored a 44. But again, we only first noticed the symptoms in March and it could have been affecting him for longer. His medical team has said the goal is to lose less than 1 point per month (as that is the average for an ALS patient’s progression) and that the drugs will lengthen the plateau before dropping down another point on that scale. 

We’ve hit a point where we aren’t rushing to take more tests or apply for more drugs and it feels a bit helpless. It’s not like something like cancer where you get the chance to fight it but rather just a management of symptoms as the disease progresses. Appointments are mostly measuring that progression and maybe a little bit helpful with things like speech therapy. So it just feels very strange as our normal daily life is pretty much unaffected at the moment and there isn’t much we can do to fight it.

You can be praying for us as we navigate daily life. Things feel mostly normal on the day-to -day but the normal days can also be the hardest days. Prayers the medications don’t bother him or his stomach and that they will work to create plateaus in the disease progression. Things like palliative care prep appointments and occupational therapy are the harder type of appointments we have coming up. And navigating the decision of when he should stop working is another huge decision we will eventually need to make (or will be made for us if it starts affecting his hands). 

We are currently looking forward to the Christmas season and have lots of fun little outings planned! We already have our Christmas tree and decorations up. Adeline turns 5 on December 1st and wants a “Christmas tree” themed party which we will be doing over the weekend. My brother’s family is going to be in town after Christmas and we also have a family vacation with Dirk’s family planned in the New Year so we have lots to look forward to in the next few months.