Dear family and friends,
It feels like several months have gone by since I last wrote a CaringBridge update but I think it's just been 3 weeks. I am heartened to report that Johan's healing continues in the right direction. Both Tindra and I feel his personality and his role as father and husband coming back more and more as each week goes by. His short-term memory and internal compass (as shown by his ability to find rooms and objects in our home) also continues to improve as well as his ability to track conversations with multiple people at once.
I'm now more comfortable leaving him alone for short periods of time as he remembers that I am working at the computer or i'm out in the garden and does not get confused.
Johan also reported last week that the milkiness in the areas where he has vision has decreased slightly and things seem a little bit clearer. He also reported (as we were driving on a 2 lane road) that he could see both edges of the road! These are both very exciting moves in the right direction. One of the highlights on Mother's Day was a ten sentence mother's Day card on unlined paper with completely straight mostly legible writing from Johan! ❤️
We had another helpful appointment at the Earl Baum Center for low Vision a few weeks back where he was tested for glare and they were able to order him a pair of indoor and outdoor lenses that go over his distance glasses that seem to be helping him see much better outdoors and indoors.
They also lent us an enormous video magnifying device where you can adjust not only the font size but the color of the background and the font itself of any testing material you place under it. We were also gifted an "Alexa" and will get Tindra's help in setting that up soon. This will help Johan to be more independent as he could ask it numerous questions throughout the day if one of us is not around.
We continue to be incredibly grateful for all of the helpers and healers that we have on board (and the ability to afford them still). We are currently working with our naturopath to explore whether Johan would be a candidate for hyperbaric oxygen chamber treatments (HBOT) which could help his brain heal as well as (hopefully) his aorta and carotid arteries. I have been in the process of looking through Johan's medical files to gather all of Johan's most pertinent information including recent scans and blood tests for the head of HBOT research in the country who we have a consult zoom with next week in order to make sure that it would be vascularly safe for Johan to proceed. Going through the medical files from Hawaii was quite triggering for me and to hear the naturopath remark (like every other medical professional who has seen his file) that it's a miracle he is alive is both a reminder of the preciousness of every moment with him and a bit of trigger.
Tindra presented a moving and personal senior speech two weeks ago about what she experienced since Johan's aortic dissection and hospitalization. It was very powerful to witness her sharing of herself so openly and honestly in front of her entire school. Johan and I were very proud (and teary)....
On a more mundane level I finally had to hire someone to come in and take care of all of our electronic and computer issues which was expensive but a relief that someone was finally able to help us get everything back in working order!
We unfortunately found out we need to tent our house and Johan's workshop for termites on June 24th and need to remove all plants, food, drinks, tinctures, herbs, spices, oils etc from our fridge, freezers, pantries and shelves along with all supplements, medications and body care products from our home. It is an incredibly daunting and overwhelming task to consider and so I'm putting out a call to anyone local that is able to help us pack up the weekend of June 21-23rd as well unpack the weekend of the 28-30th of June 🙏🏼
I would also love to hear from anybody who has experienced tenting of their home for any tips or things to consider. We are renting a 15 ft box truck that we can drive directly up to the house and I'm already collecting boxes so we will be able to fill the truck and then drive it to park somewhere shady on our property.
Another shout out for help is I will eventually need to find time this summer to do our taxes from 2023 (including Johan's business taxes) So if there's anyone local that is particularly good with those types of things and has free time please let me know!
One other element that has been occupying much of my free time is that I realized back in mid April that I still had 25 continuing education hours to complete before my LCSW license expires on my birthday (May 31st)! Finding the time to complete these hours has been incredibly difficult but Johan has been very supportive of me watching/listening to them during our meals and car rides as he luckily finds them quite interesting as well!
I have daily ponderings about what and how we prioritize how we use this precious time we have on the planet. And how do others choose what to prioritize? I have noticed that I continue to prioritize healthy food and sleep as well as Johan's therapies and regime of healing/therapy appointments at the expense of laundry, bathing, exercising, nail and hair cutting!! I recognize for some people they would not feel sane without a daily run and shower but could forego sleep and live on coffee and donuts. I also recognize that spending time with friends is a huge nourishment for the both of us and so I will almost always prioritize that over dealing with the endless list of important tasks on my ever lengthening "To Do" list.
I continue to be grateful for my Buddhist and meditation practices, that help me stay rooted in the present moment and out of "catastrophic future thinking" (most of the time)
We are all looking forward to having Freja home on May 27th and to Tindra's graduation from high school on the 31st!!!
Thankfully Johan continues to be incredibly kind, generous, grateful, sweet and more and more back to being a supportive partner who patiently listens to all of my musings and external processing while telling me he loves me 50 times a day ❤️
We both continue to feel incredibly grateful to Jamaeca for her enthusiastic, upbeat creative energy and her commitment to helping to do all the vision, cognition and memory strengthening strategies while enjoying lots of hearty laughs with Johan!
And I want to again share my heartfelt gratitude for the healthy and delicious food that folks have brought by (and the restaurant gift certificates) as well as the grocery shopping that have both saved me countless hours so that I can continue to attend to Johan's healing and the unending tasks and details of our lives... 🙏🏼
And SO emmensly grateful for the Go Fund me so that we don't have to worry too much yet about the loss of income and the mounting expenses of all the healing therapies Johan is taking part in.
Johan also wanted me to tell you "Thank you for all of your love and support, I am coming back but it's slow"
We are grateful for continued prayers and visualizations of a strong, flexible, healthy aorta and carotid arteries as well as lots of brain healing and neural network connections especially in the occipital lobe.
XOXO
Courtney (and Johan)
Info on HBOT from the national institute of health: https://pubmed.ncbi.nlm.nih.gov/31985478/
