Writing updates seem to be harder and harder these days. Both due to life seeming to be constantly busy and simply because there isn’t much to update, or so I think. 

Since my last update in July it seems we have been constantly sick! As we speak I just came down with another cold. In April my mom got to finally go to Arizona to see my brothers family and the day she came back I got hit with a respiratory virus. I was in bed for 7 days straight and was fighting bronchitis for about 3 weeks and STILL have a lingering cough. My lungs haven’t recovered still and now I am hit with another bug. The kids have had bugs on and off since Easter it seems. Thankfully Dirk hasn’t shown any symptoms of any of these sicknesses. It does make caregiving quite challenging though.

In May we were able to send my parents away to Suncadia for a weekend to rest which was great and am hoping we can get them away again sometime soon. They do a lot in terms of caring for me, Dirk and the girls on a daily basis. My dad helps with all the transfers for Dirk and we both do it together to reduce the strain and chance of falls. On average from getting out of bed and back to bed at night we do around 20 transfers per day from one chair to another and bathroom trips. He also helps with feeding Dirk or giving medications if I am not home to do them. My mom helps a ton with meals, housework, homeschooling Adeline and caring for the girls. 

At the end of April In-home care began with someone coming 3 days per week for 4 hours per day. They come at 8am and help get Dirk up and out of bed, showered, dressed, downstairs and fed. They do all of the blending of Dirk’s meals while here and also help with laundry and cleaning that is associate with Dirk. It has been a huge help and gives both me and Dad a bit of a rest during the week. I am still fighting with our private long term care insurance to get this covered by them (it’s been 4 months of this…) and once they start to finally cover it then we will bump up to 4x a week.

We have also had Occupational and Physical therapy coming since the end of April to help with stretching and range of motion as well as training for us caregivers on different devices and transfers. This will be coming to an end soon as Medicare only allows so many renewals and won’t allow it to be ongoing. But we have learned some great ways to help reduce Dirk’s arm and leg pain with stretching and will probably be able to have them back again once we get to the point of needing to use a Hoyer lift to transfer Dirk. We are hoping to finish working with a splint guy they brought in to get Dirk dynamic splints that will stretch his legs and arms for us as well. Just waiting on insurance for those. 

Sleep is challenging for me and probably my biggest hurdle at the moment. Dirk cannot roll over in bed by himself anymore which means he needs turning 3-4 times per night so he doesn’t get bed sores and also, is just more comfortable and can sleep better. On top of that Elizabeth is only 2 and wakes up in the night frequently or ends up sleeping in my bed since I’m often to tired to try to get her back in hers. Adeline often has bad dreams and also wakes up needing comfort. Its very common for me to be woken up and have to get out of bed 6-8 times per night. Needless to say, most days I wake up exhausted. I can usually sneak a nap in the afternoon if the timing aligns with Elizabeths nap and Dirk having had lunch and gone to the bathroom. But often those things don’t line up and I miss my window. 

ALS clinic update:

We opted to stop going to the ALS clinic this last month and just meet virtually with Dirk’s main neurologist and if needed, his respiratory therapist. Since we have PT and OT coming to the house and no longer need some of the other therapies it made sense to release Dirk’s spot so someone else could take it. His appointments are now mostly pain management related at this point. We were battling some severe pain in his legs and shoulders last month and the timing was bad with his doctor being out of town but were able to meet with someone else to get that figured out and increase his pain medications which have helped a ton. Because he has so much muscle tone in his legs and the lack of movement he gets a lot of muscle pain in his legs specifically. Also the lack of movement in his arms causes pain behind his shoulder blades. Stretching and range of motion helps some.

He has pretty much lost all useful movement of his arms and hands. We often have to go put his arms back up on the arm rests and open his hands for him so they don’t hurt. We can still transfer him using a turntable style disc as he has lots of leg strength. He can still take a step or two assisted but has no balance so he cannot actually walk himself. But this helps with transferring him. His neck strength is also worse and can only hold his head up for a few minutes before getting tired. He mostly sits in his recliner which supports him well so it doesn’t bother him much day to day. He can still have a bite or two of food when he wants but not much more than that. All his nutrition is through his feeding tube which we blend ourselves. We haven’t done any lung tests so we don’t know how much his lungs have declined. He still only wears the BiPap at night. He did seem to be getting worse for a few weeks and started wearing it during the day but then we treated him for walking pneumonia and he seems to bounce back a bit since then and hasn’t asked to wear it during the day since then. In terms of the ALS-FRS his doctor didn’t do it this round but he is somewhere around a 14-15 at this point from taking the test myself and the answers I think he would give. This means he lost less points that he previously has but he also just has less points to lose at this point so I’m not sure if that means his progression has slowed or he is just at the point in progression where it plateaus due to the nature of the questions. 

Naturopath update & Miami clinic:

We have stopped seeing his naturopath at the moment. We had a two hour conversation with a clinic based out of Miami who is the top ALS clinic in the country and are in the midst of running a ton of lab work for them. The conclusion of the conversation was to try to determine the root cause of Dirk’s specific ALS. She had some theories that it is something viral that is the root cause like West Nile virus (although his test came back negative) due to white matter in his frontal lobe from his original MRI done by the ALS clinic when he was diagnosed. The Mycoplasma pneumonia that we already know he has but have determined its not necessarily an ongoing infection but a chronic one could actually alone be the root cause but it is bacterial and she believes the root is viral. It was very interesting listening to her interpret the labs that we had done during Dirk’s original diagnosis that the ALS clinic disregarded due to them looking for something other than ALS to be the cause of his symptoms. But never looking at what could have caused his ALS. For example protein in his spinal tap but never running more tests to figure out what protein it is…etc. 

But once we can determine the root cause then we will most likely fly to Miami for 3-4 weeks for treatment with them. She recommended stopping our current protocol with our local naturopath since we hadn’t seen any change in Dirk. Also, if they treat him they would prefer a blank slate so that what they give him won’t interact with something else he’s been taking. It’s a long shot but this clinic has seen 7 patients with complete reversals and have numerous patients whose progression has stopped and are seeing small improvements. They are trying new things constantly and learning more about ALS on a daily basis.  ALS is not one thing. It is a combination of numerous things going on in the body, so one drug isn’t going to be the answer but rather a makeup of numerous things. Florida has a compassion law that allows them to try basically anything on a terminal patient and so they can try clinical trials that have shown improvement in some areas in certain patients as long as its passed safety and efficacy. 

It is very expensive. So prayers for wisdom as we go down this path that we would make wise decisions. The naturopath was also not cheap but this is another level of cost since its a more in-depth treatment and also out of state. None of it is covered by insurance. We can afford to go at least one round and then we would need to figure some things out to go back again. But God is good and if He wants Dirk there then He will open the doors. 

Some fun things:

In June Adeline go to go to VBS at our church and I volunteered for two days of it when we had in-home care. She had a BLAST and loved it. Unfortunately she came down sick on Thursday and had to skip the last day of it but it was still a great experience overall!

We had a few fun parties lately either at our house or at Grandpa’s for different birthdays or celebrations in the last few months. I usually end up making all the cakes so we’ve had an abundance of cake around the house lately. 

We’ve had several different groups of people come over to help us sort things out at the house recently. Since moving here in August we just haven’t had the chance to finish unpacking or organize things how we would like. Molly came and helped me sort out the office which has been amazing to have a place to go and properly work while I can still hear Dirk and the girls down the hall. Two girls from my small group came and helped me redo our bonus room/playroom with some new cubbies and sorted toys and craft items so its much more usable. And my cousins came and helped my parents work on the garage to unpack and sort items and were able to do 3 car loads of items to donate and one truck load to the dump!  It has been amazing to feel like things are more organized and useful in the house recently!

I am hoping this summer we can get our shed built, finish building out our upstairs laundry room and hoping I can finish dealing with some of the boxes we still have upstairs to unpack. But one step at a time and it feels really good to have some more things sorted!

My garden is starting to burst with fruits and veggies! We got a great first round of strawberries and snap peas. Hoping to plant another round of snap peas this week and the strawberries are sending out runners I need to deal with. I went and got a big bowl of lettuce today to make taco salad for some family coming over. Bush beans are starting to produce soon and cucumbers are blooming too! Tomatoes and peppers are taking their sweet time and I’m battling the bunnies with pole beans, cabbage and cauliflower. But the garden has been so much fun for me and watering in the evening helps me to calm my mind and wind down at the end of the day. 

Adeline finished kindergarten and so we celebrated with a little photoshoot near our house with a view of the mountain with a cap and gown and picking wildflowers.

Praise and prayers requests:

• Prayers for wisdom as we pursue going to Miami and if it is the right choice. That the labs would be definitive and give us the answers we need to make a wise decision. And if we are to go that travel and accommodations and caregiving would all line up well.
• Praise that it does seem Dirk only lost 3 points in the last 3 months which is a answer to prayer!
• Praise we were able to get Dirk’s pain management under control and prayers that this would continue. 
• Praise that in-home care began and has been super helpful. Prayers that insurance would kick in so it is financially covered. 
• Prayers for sleep and well being. Would love to not be sick all the time. 

And of course, a few recent photos: