March was a busy month for us!  It started off with that my mom was supposed to head to Arizona for a week to visit with my brother but ended up both hurting her back and coming down sick which made it impossible for her to travel. Dirk’s Aunt had planned to come stay with us for a few days to help fill the gap of my mom being gone and she decided to still come anyways to help out! It was a huge blessing as my mom was in bed the whole time she was here and she was a huge help with the girls, laundry, cleaning, food and just general entertainment! We felt very loved and blessed by her stay. Mom is still battling bronchitis and back pain from that timeframe but seems to be on the mend with the sickness.

We were able to buy a used wheelchair van thanks to Dirk’s dad hunting down a very cheap one for us! Dirk didn’t want to spend any money on one and so we found one for the right price. It isn’t super pretty, but it does the job and makes it WAY easier to get him out of the house! We’ve already used it for naturopath appointments and got him out to church once too. Its a huge blessing. It enables me to take him places without additional support.

We also had an ALS clinic and several naturopath appointments in the last two weeks with some updates there. 

ALS clinic update:
We were able to attend virtually which was SO much easier than having to get up at 5am to get out to Seattle for appointments. At this point we both are feeling that the ALS clinic is not as big of a help as it once was. We have all of the equipment we could or will need in the future, his lung tests don’t really matter anymore as the outcome won’t change the protocol since he already has a BiPap and doesn’t want a Trach. The OT and PT don’t actually physically do anything with him at the appointments and just give verbal advice. It’s basically just pain management at this point which we can just do by communicating with his doctor. 

But his ALSFS score is now 17 (he lost 4 points in the last 3 months and his average is usually 5 points). He is now wheelchair bound due to not being able to grip the walker with his hands along with not being able to balance himself at all, muscle spasms in his legs and just overall tightness in his leg muscles. But his hands were the clincher in his losing his ability to use the walker. He has a lot of strength still in his legs and can pretty much stand still once up (as long as we balance him) which helps with transfers. It does take two people and a turntable to transfer him from chair to wheelchair, bed to wheelchair, wheelchair to chairlift…etc. So my dad and I do it together. We were gifted a sit-to-stand and just got a Hoyer lift but haven’t mastered that yet and find doing it together is pretty easy. We have home health PT coming out next week to start helping with range of motion and stretching exercise as well as training on the sit-to-stand and Hoyer lift. 

His arms and hands have gotten drastically worse. Shoulder to elbow is pretty much not usable by himself.  He still has some movement from elbow to hand but his hands are pretty bad too. He can’t do simple things like rub his eye or scratch an itch. We are also having to have his wheelchair adapted so he can use his eye gaze to drive it instead of his hands. 

His swallowing is a tad worse in terms of swallowing pills but using applesauce has helped to get them down easier. We don’t know about his breathing but he doesn’t have any symptoms of them being drastically worse. His daily physical activities have decreased over time and so its harder to tell. He isn’t out of breath or doesn’t feel a lack of oxygen at all. We just have to keep an eye out for signs and would in turn increase how often he wears his BiPap. Right now he just wears it at night. 

His legs are in quite a bit of pain and we are working on managing that. We have slowly been adding in pain medications starting with things like ibuprofen and in the last month have started adding in some prescription medications trying to help target muscle and nerve pain. Right now he says it still hurts but the edge is taken off so its manageable. 

Naturopath update:
I always feel like the naturopath updates are much more encouraging and specific.  He has a very hard to fight Lyme co-infection called Bartonella and probably also Babesia. It is in his spinal column and neurological as well. He is also battling Candida in his gut which is causing a lot of issues. Ebstein barr virus and CMV (cytomegalovirus) are also issues. He has high heavy metals and glyphosate levels.  Lyme disease loves heavy metals. He also has slight hypothyroidism. His body is also in a state of his immune system overreacting to all that it is fighting.

We have increased his medications and supplements towards the Lyme infections and are doing Ozone and UVBI therapies 2-4 times per month. The goal is to try to do it once a week. He has another medication they want him to have injected or IV pushed twice a week and so we are working on ways to do that without having to drive to Woodinville twice per week. The last appointment they injected this medication all the way down both sides of his spine. On the 1st he had a day of IVs which included heavy metal detox, this Lyme medication, Ozone therapy, UVBI, and Phospholipids followed by PT and craniosacral therapy. 

Right now we are going to Woodinville twice a month for appointments with his naturopath, PT and IVs and are going to try to supplement some of it with a local IV clinic. We are talking about doing more intense treatments by going up every day for a week at at time to see if we can help slow his progression. His naturopaths goal is to get him to only lose 3 points in the next 3 months rather than the normal 5. With the thought process of if we can accomplish that, then we can stop it and even reverse it. 

Have we seen any positive change in his progression?
Besides him only losing 4 points instead of 5 (and he’s on the verge of losing a 5th point…), no we have not. I do think he looks incredibly healthy and seems stronger after IV days (although they are also exhausting). We are only a few months into this fight really. And it can take years to reverse all that has happened to him. The question is if we can fight it fast enough to make a difference. We are working on trying to be all in on this treatment and really give it a chance but the distance and his lack of mobility make it exhausting for all and extremely painful for him.

Other updates:
I am working on setting up in-home care starting in the next few weeks and home health at the moment. In-home care would be able to help with showering, toileting, dressing, feeding…etc. starting at 3x per week. With that we would also qualify for a homemaker to come in once a week to help with housework type things. And then home health PT will help with stretching and range of motion exercises as well as training us to more safely help him. We thankfully have long term care insurance that will cover private care. He also qualifies for hospice but we don’t quite feel ready to pull that card as that would probably eliminate the naturopath route of care as they would only help for end of life care. Dirk says he only wants a green eyed British girl showering him though. 😉 Haha 

I will say the use of his eye gaze computer has been amazing. Its great to get to talk to him everyday. It has reduced our frustrations greatly by opening up the door to communication again. His phone, email and social media are all accessible from his computer so feel free to send him a note if you’d like. He might be a little slow at replying though. 

Fun stuff:
Dirk was able to come to Easter Sunday with us in the wheelchair van and got to see Adeline sing on stage for the first time. She was adorable and SO nervous but came out of her shell and worked her way from two rows back to the front row pretty quickly (HAHA). We also hosted Dirk’s family for Thanksgiving and the kids had a blast running around in the backyard. 

Watching Adeline learn is SO FUN. She’s getting really good at reading and math and LOVES science. We are doing a little body unit study and she is loving learning about how the body works. Elizabeth is a constant state of hilariousness. We laugh at this child all day long. She also just gets into things all the time. Usually my makeup or lotions or body wash. We frequently find her in a bathroom sink covered in hand soap. She keeps us on our toes. They have been LOVING the fenced backyard this last week of sunny days and have been outside constantly. We are excited to get the backyard setup for them this summer for lots of fun. 

Adeline and I are planning out a big garden in the backyard. We have a bunch of seedlings started upstairs under grow lights already.  We have raised beds and dirt arriving in the next two weeks and have already had some people volunteer to help shovel dirt and setup the beds so we can start planting! I am excited to have a little outdoor hobby to keep myself busy with since I won’t be physically photographing weddings this summer. 

On that note, my company is still booking like crazy for our associate team and we have over 35 weddings on the books so far this year. Feeling very blessed by this business and my amazing team and that I can still do the backend work from home while my team photographs weddings. 

We celebrated Dirk turning 34 in February and had a little family gathering to celebrate! The theme was basically food and everyone brought “little bites” of his favorite foods – and of course I made a ton too! He can’t eat much but he can have little bites of things. haha So that was the theme to give him lots of little bites of all his favorite foods.

We have been very blessed by our old church (and my moms) by providing us 2-3 meals every week. We didn’t realize how much of a blessing it would be until we finally said yes to letting them do it. It’s been amazing and takes a huge load off us every week.  Our small group at our church has also been helping with blending some of Dirk’s meals for us too which is another huge load off my plate! We feel very loved and blessed by the outpouring. 

We once again find God providing for us in ways we never anticipated. We randomly got a call from our long term disability that we qualify for a few things due to Dirk’s disability which means they’ll be sending us more money (say what?!?). Pretty much the exact monthly cost of the naturopath every month. We’re continually blown away by God’s provision and going ahead of us in all of this. 

Praise and Prayer Requests:

• Praise we were able to purchase a wheelchair van! Such a relief to be able to get him places easily and I feel such a freedom to be able to transport him by myself!
• Praise we were able to attend the ALS clinic virtually.
• Praise his lung progression seems to have stayed slow and praise he only lost 4 points this time for his ALSFS score.
• Prayer he would lose only 3 points (or less!) in the next 3 months and we would see positive results from the naturopaths recommendations and have wisdom on this path. 
• Prayer for handling of Dirk’s pain, that we would be able to manage it well. 
• Prayer for sleep for both me and Dirk and our girls. Dirk never sleeps well. I go back and forth with good and bad days. Adeline has a lot of nightmares. And well, Elizabeth is 2. Haha
• Praise that the in-home care and home health are moving along quickly. 
• Prayer for day-to-day safety for all of us as we keep Dirk and ourselves safe while transporting him throughout the house. 
• Prayer for endurance for myself, specifically with all the busy work. Scheduling appointments, arranging in-home care, calling and emailing doctors, following up with those calls and emails, ordering medications, supplements and prescriptions, managing all his medications throughout the day, cooking, blending and giving him meals…etc. It can be a lot and I run out of steam which means his care slows. If I’m not on top of scheduling his appointments and managing his medications that means they get spaced out farther and it slows his potential progress. 

And some recent photos: