Dust, Tight Quarters, and Chaos

Phew, y'all thought I took a long break last time!!!

Our Accessibility Remodel began about six weeks ago, which means Dad and I have been living in the basement together while our first floor is being completely redesigned for Dad. It is really exciting, loud, and chaotic but it will be worth it.

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Ignore my voice! Day one remodel update

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The most recent update on our remodel

We lost our older dog, Sirius Black, on March 27th after a brief fight with cancer. Sirius and Pops were the best of friends, and we are all three missing our Bubby Boy.

Dad and Sirius

Orion and Sirius snuggling

Dad is losing dexterity, leg strength, and can no longer walk without utilizing his rollator. His breathing is a constant concern, and I am so thankful for the support that his astral vent gives him. Walking to the bathroom without his oxygen wears him out, and he really struggles with stairs. We have invested in a gait belt, and I am with him almost 24/7 to ensure he is safe and taken care of. On the days I need to get groceries or run errands, we do have a Life Alert, which brings me some modicum of comfort. Shoutout to the incredible Independence Fire Department for showing up the last time Dad fell, and I could not get him up off the floor.

If a pAL(s) is diagnosed with ALS after the age of 70 they often experience a slow progression of the disease and oftentimes pass from a different ailment like their heart, or if they're extraordinarily blessed, old age. Sadly slow progression does not mean zero progression, and it is not easy to watch the man I have long called Iron Man lose his mobility and independence.

This progression also means it is very difficult for Dad to get out of the house, particularly while we are living in the basement, since stairs are incredibly taxing for him, and his power chair would get stuck on our hill. I know he misses his friends and our loved ones; I do too. At this stage in Dad's progression and our remodel, I am unable to leave Dad for extended periods of time without putting him in danger; A risk I am not willing to take no matter how many events I miss out on. Dad's safety and well-being are paramount to me, always. We have high hopes of being able to host our loved ones once the remodel is completed and the first floor is put back together. It's an ever-evolving game of Tetris and Jenga!

We are extremely blessed to have my sister-in-law, who is working to find time in her busy schedule to come spend a day a week with Dad. Her willingness to support us will be invaluable in so many ways and we are extraordinarily thankful.

Our remodel is anticipated to end on June 9th, and I have surgery on June 11th that will require me to be on bed rest for two weeks after. A meal train link will be put together soon with information on gluten-free meals that can be ordered for me (thanks, Celiac Disease!) and meals Dad will enjoy. Once I'm healed we cannot wait to see you all!!!

The annual Smoke Justis ALS Week is coming up quick! Learn more about the events and how to support here: https://www.que4care.com/.

Que4Care culminates with Lou Gehrig Day at the Cincinnati Reds on June 2nd. Dad and I will be there courtesy of ALS United, and we would love to see you too!

The link for tickets is: https://alsunitedohio.ejoinme.org/2026REDSLGD?bbeml=tp-dchcf2CJ10aOmBYsJXJgWg.jKpSlORfAz0q8PsR7sDelAA.rafCqNrDaHUC-Vc7upWLRJw.lhroSTuvGBEaBNEAQoWcOhQ

ALS United is hosting its first-ever walk in Northern Kentucky on October 4th. Bo's Dugout has a donation goal of $5000. If you donate $50 or more, you will receive a Bo's Dugout t-shirt that has been designed by one of my best friends, Leanne. We look forward to walking with you on what should be a beautiful and fun day at Pioneer Park. Donate and learn more about the NKY ALS United walk here: https://secure.alsohio.org/site/TR/Endurance/General?pg=personal&px=1099351&fr_id=1190

Finally, my dear friend, who also cared for her Dad while he fought ALS, is an incredible jewelry designer and has updated her business name and logo. Please go to: https://altrujewelry.com/ to support her incredible work. She has a line of ALS necklaces that tell the story of pALS and their loved ones while also donating to ALS charities.

Thank you for your continued support, prayers, and love. We hope to see you at the ALS Block Party, Lou Gehrig Day at GABP, and at the NKY ALS Walk. We also hope to invite you over soon. You are all so important to us, and we love you very much!

With love and gratitude,

McKenzie and Bo