It has been a busy few months around here! It seems we constantly have visitors or activities these days. We now have in-home care coming 3 times per week for 4 hours and they get Dirk up, showered, dressed, fed and help with blending Dirk’s meals as well as some cleaning and laundry. It has been a huge help for us to get some mornings off and the blending of Dirk’s meals has been a huge time saver. We are still working with insurance to get the care paid for but have to hit a certain wait period before they’ll do that and hopefully that will happen in November.

Physical therapy and Occupational therapy visits are coming to an end as medicare only allows 6 weeks at a time and we have maxed out the renewals but we feel confident in their training of us and our in-home care to be able to stretch Dirk and use equipment with him. Dirk did get some dynamic leg splints that help slowly stretch him and he wears them for about three hours at a day. We slowly increase the tension on it every week. He also got some resting hand splints as well to just help keep everything aligned.

In August Dirk had his feeding tube replaced as his original one was getting worn and we also wanted to swap it out for a low profile tube. So now he no longer has a 12 inch tube dangling from his stomach but instead a little button! It reduces him getting tugged on quite as much and he doesn’t have to wear a belt around it when sleeping or going out. It wasn’t the most fun experience. The doctor described it as getting kicked in the gut and Dirk said that was an understatement. He almost passed out after they were all done and we had to get some ice on him and he came back around. But otherwise it went well! 

We had a virtual appointment with his Doctor and it was pretty quick as there was not much to update. His pain meds are managing his pain fairly well and everything has been pretty stable. He hadn’t had his ALS-FRS score done for the last 6 months. While he normally loses 5 points every 3 months he has only lost 4 points in the last 6 months (PRAISE) which puts him at a 13/48. He has continued to lose usage of his arms, hands and legs along with his core strength. Swallowing is harder to the point he has asked to stop taking any medications by mouth. His neck strength is also worsening which makes everything quite a bit harder. We’ve been able to keep his weight fairly stable – or so we think as we can’t weight him. But from appearances he seems to have maintained which is a big win as ALS patients are constantly losing muscle mass and weight. He has lost 80lbs since his diagnosis. 

FLORIDA:
As the title says, we are going to Florida! We have made the decision to head to a clinic in Miami that specializes in ALS patients. They did a round of bloodwork before we decided to go and determined that Dirk has Lyme disease and Epstein Barr Virus. The strain of Lyme he has is Borrelia burgdorferi which is the strain I thought he had and is known as “The Great Mimicker” since, you guessed it…it mimics other diseases. He also has two smaller viruses, Coxsackie and Parvovirus. Parvovirus has no treatment. But the thought process is that the two smaller viruses might come down as we treat the other diseases. 

We will head to Florida in early October. Dirk will be there for 3 weeks and his parents will be going the entire time to care for him. I will be going for 5-6 days on either end of the trip so I can travel with him both ways and help get everyone setup to care for him. I’ll be coming home in the middle to be with the girls who will be staying at home with my parents. The clinic is just a weekday daytime treatment so he will have nights and weekends off. They will be doing something called SOTS for Lyme and Epstein Barr which essentially is where they create a molecule based off his exact blood and disease and inject it in his system and it gives his body a roadmap on how to fight and turn off the diseases and it continues to work for about 6 months. So he will have 2 of those, one for each disease. Most patients with his exact strains end up having two rounds of SOTS as the diseases are so difficult to treat. 

And then they have numerous protocols based off of your symptoms that they will put you on. One is for bulbar onset and can help drastically with speech and bulbar symptoms. The protocol for his treatment may change along the way depending on how he responds to different treatments. The main goal of the first 3 weeks of treatment is to stop the progression of the disease and then ideally return in 6 months. I’m deep in the midst of the planning of the trip which is fairly complicated and have also recently come down sick which is making things challenging. 

Please, please, please pray with us now, during and even after this trip that we will see definitive results from his time at this clinic. 

Some fun things:
In August I got to have a night away for some rest, relaxation and fun! My friend Sarah came along with me and we were able to get pedicures, shop, eat good food, watch a funny movie and sleep in! It was lovely and I definitely felt rejuvenated afterwards! Mom and Dad also got away for 3 nights last week to Whidbey Island for a break and we scheduled in-home care to be here and Dirk’s parents to help out while they were gone. 

We started a new school year with Adeline going into 1st grade and Elizabeth is in “pre-pre-school”. haha Elizabeth likes being involved so we are working on learning colors, shapes and letter and number recognition. Adeline has actually been doing 1st grade for about half the summer as we usually do 6 weeks on 1 week off and continue through the summer so she doesn’t lose what she’s learned. She’s getting good at reading and loves science. We are currently reading Peter Pan in prep for her Tinkerbell birthday party in December!

I signed Adeline up for ballet this month and she loves getting all her ballet things on and getting to learn new moves! They are already working on learning the start of the routine for their recital in December. Once Elizabeth turns 3 I can sign her up for a class at the same time as Adelines which she will love!  Once we get back from Florida I might look into getting them into swimming lessons too since we will have in-home care another morning. I am working to try to create better routines and activities for the girls despite our current home situation.

We had an early birthday party for Elizabeth while family was in town and it was princess themed! We all dressed up including Dirk as Aladdin as me as Jasmine. The kids had a blast bouncing in the bouncy house, decorating a cardboard castle and wands and playing with their cousins. 

I have picked over 150 cucumbers from my garden and have canned 44 jars of pickles! We are currently bursting with purple pole beans, still getting some cucumbers, handfuls of raspberries everyday and my tomatoes are sloooooowly starting to ripen! Hoping my carrots will turn out and we have some HUGE pumpkins that are starting to ripen too. My cauliflower, cabbage, kale and beets never quite turned out due to bugs and bunnies. We have a few snap peas that are flowering but I’ve battled the bunnies with those too and they ate about half. I wanted to get a fall garden going but have run a bit out of steam with it and since we’ll be gone in October it’s probably for the best! But I am already excited for next years garden and have been brainstorming how I want it to look. I have garlic coming soon that I will plant that will be ready next Spring! The garden has been an amazing outlet for me to just relax and spend time outside while the girls play.

Women’s bible study started up again this week and its nice to get out and fellowship with women during the week and get Adeline out another day too. Sunday’s are often more challenging to get to church so I’m glad to have another opportunity to get to church. Tuesday’s we have in-home care and Dirk’s mom comes over for the day to help out so it frees me to get out! I’ll miss a few weeks while we are gone but we have a group chat to stay updated with one another. 

Prayer requests: 

• Prayers for navigating the planning process of the Florida trip. Lots of ducks to get in a row. Prayers I would also get over this cold quickly so I can have mental clarity and energy to pack. Also that no one else would get sick.
• Prayers for the actual travel to Florida and Dirk’s discomfort and also safety. Please pray his wheelchair won’t be damaged in the process as they put it in the hold of the plane and as we disassemble it as much as possible for travel at the gate.
• Please pray for a halt in Dirk’s progression and even that we would see definitive improvement! Prayers for unworldly wisdom and discernment for the doctors treating him.
• Prayers for those traveling with and caring for Dirk in this process as well as the family staying at home. It will all be quite a large change for everyone, especially the girls and they’re going to struggle with Mama being gone. 
• Praise that Dirk’s progression has SLOWED!!
• Praise for all the support we get and prayers for their stamina. Reuben is our in-home care aid. Sheila is here several times a week. Michael comes so Adeline and I can go to ballet and give relief one night a week. Both of mine and mom’s churches alternate months making us meals. So many are praying for us. Gods provision continues to be immense and we are stunned. We feel so loved, blessed and cared for.

And some fun photos: