Dear family and friends,

Springtime is always the busiest time of the year for us and this year is no exception. I have written little notes to myself over the past 3 weeks but have not been able to carve out anytime to write a full update until now....

The most important news is that Johan's progress continues in the right direction. Cognitively he has made tremendous strides over  the last 3 weeks and both Tindra and I feel like Johan is "back" more than ever. It is incredibly comforting to both of us to feel him more here with us even though his short-term memory ilcan still be pretty spotty. He is able to remember a lot more things that have happened during the week and is able to navigate his way around the house much better but still forgets what happened 5 minutes ago. 

It's hard to quantify and measure improvements in his vision without the official peripheral vision test that the neuro opthamologist will do in June but both Jamaeca (the grad student OT that works with him most weekdays) and I feel that his visual fields have increased and he can see a little bit more in the bottom two quadrants and in the top left quadrant. He still says his vision is milky in the areas where he can see which nobody has been able to give us a clear explanation of why, which is frustrating. We have also been able to recognize that cloudy overcast days he can see better than bright sunny days (even though the neurovision therapist down in San Carlos tested his pupils and feels like they are now dilating properly)

He and Jamaica read a few pages out of a large print Agatha Christie mystery we got from the library every day. Even though it's slow and arduous it's quite satisfying for all involved. Johan likes to listen to NPR as often as he can which I imagine is stimulating to the brain in is own way. 

We have had some milestone events these last 3 weeks too as Johan's stamina is increasing... We went to three of Tindra's track meets (which was very satisfying for the entire family) as well as went out to a friend's birthday party that was also highly successful and surprisingly not too exhausting! 

He continues to work hard 5 days a week from 9:00 to 12:30 with Jamaeca and after his nap does either a walk, physical therapy, speech therapy, neuro-acupuncture or craniosacral therapy. It's a full day and he is often ready for bed around 8:30. 

He is really waking up to the needs that our 11 acre property has during the spring and luckily we've been able to get some help with figuring out the complex irrigation and rainwater catchment systems. With the awareness that we probably won't be going on many adventures this summer we have tried to carve out some time to plant veggies and herbs in the garden which has felt very nourishing to the both of us.

We continue to be incredibly grateful for our community both near and far with the incredible support bringing meals, helping us solve computer problems, errand running and appliance breakdowns. 

I continue to feel like I'm walking a tightrope juggling balls that keep falling to the ground but I've sort of accepted it's just going to feel like that for a while. Everyday I rewrite my to-do list as the priorities change. Johan's healing, Freja and Tindra's needs and me not burning out continue to be the top priority as well as focusing on Tindra's impending graduation from high school. Everything else comes after that. I find myself contemplating and wondering how other people choose what to prioritize as it seems to be a moving target that changes throughout the day and throughout the week.... Questions like "What does self care look like? How much sleep do I really need? Is it okay to only shower once a week? Is it okay to only shave Johan's face once a week? Can I let his toenails go for a month? Is the joy I feel being out in the garden worth not crossing anything off my list this morning?" There's no rule book but as long as Johan's healing keeps moving in the right direction, our basic needs are covered and I don't forget to pay any huge bills I think everything's going just fine.....

Lucky Johan continues to be incredibly kind, generous, grateful and sweet which makes everything else feel manageable.

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 spread some more heartfelt gratitude for the healthy and delicious food that folks have been bringing by as well as the grocery shopping that have both saved me countless hours so that I can attend to Johan's healing and the unending tasks and details of our lives...

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 lobes 🙏🏼 ✨ 🙏🏼 

XOXO

Courtney and Johan