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Hello everyone on Team Lissa!

My last post mentioned we will be needing a Handicap equipped Van in the near future and that reality is almost here. I honestly was just moving ahead and not considering the financial burden of not only the Van, but caregivers, medications, supplements, insurance denials for necessary equipment etc…the list goes on and on.


Then a loving nudge from our friend and neighbor, Corey, about a possible GoFundMe to help shoulder the mounting cost of Lissa’s daily medical care was turned into a reality under the amazing guidance of our friend Hillary. Two champions of Lissa, like so many of you as well. As most of you know the GoFundMe was a smashing success exceeding our initial goal in a matter of days. Truly Amazing!


The Van is making its way through minor repairs and should be in our possession in a week or so. It will be an incredible relief to us both and allow for easier and more frequent visits to the barn, doctor appointments and friends back yards!

Some Updates


Diet


We have revised Lissa’s diet which now includes chicken, turkey, grains, rice, all veggies and fruit. We are still trying to stay away from MSG products which contain glutamate, but we are not as severe about what she is eating. The most important element is that all foods be well hydrated and easily chewable as her chewing and swallowing has become a bit more challenging. Soft cooked foods carry the day.


Pain


Lissa’s biggest challenge is now pain, especially in her upper arms and hands. After trying Gabapentin and now Tramadol, which have not brought much relief, we are experimenting with Salonpas and CBD patches . These seem to help the most with the acute pain episodes. She is also taking CBD/THC gummies at night and they are helping us both sleep between moments of pain and uncomfortableness when Lissa needs to be repositioned during the night.


Speech


Lissa’s ability to articulate and her breath support are getting worse so talking on the phone is now extremely difficult. Texting and email is the preferred way to communicate now.

Evusheld


Her immune response to the Covid Vaccine was weak so her Oncologist has suggested she take the Evusheld shot which is a direct delivery of Covid Antibodies into her immune system and lasts for 6 months at which time it can be repeated. I’m pushing to get that appointment ASAP.


Twyla


Our loving dog Twyla and the heart of our home has developed Congestive Heart Failure. It would be a great blow to lose her as she is Lissa’s shadow all day long following her every move with unconditional love and attention. We have a Cardiologist who has started her on 3 medications which have helped her breathing and will hopefully prolong her life.

As this journey evolves, we are adjusting our philosophy and approach. Taking anything and everything that exists to try and stop the progression was our initial strategy in the hopes of slowing down the progression. Quality of life is now of great importance and many of the numerous supplements and medications have had undesirable consequences. Lissa has been judiciously deciding which supps and meds are worth the risk of side effects and letting go of the ones she no longer believes may be beneficial. We are not giving up, we are just trying to bring some balance back into our lives.


Thank you again for all of your love and support. We could not do this without all of you!


Love,

Bill

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