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Day 131: It must be amazing to eat real food again.

Hi, friends.

I know it's been a while. It's been one of those "When you don't have anything good to say..." situations for me. It's so much more fun to write positive posts.

The good news is, he is finally able to eat "real" foods again. If you know Mike, he LOVES to eat. So this is beautiful. The other day he was literally crying (ok screaming) at me over getting him some ice cream, so I have asked the nutrition team to prioritize that.

These last few weeks have just been really hard for Mike and managing his care has been much more painful. He was moved from one facility to another and somehow his antidepressant medication was missed, which led him to have the darkest of thoughts. While the medications have been stabilized, he continues to suffer from the reality of his situation, and tends to take out his frustrations on me so heavily during our visits that I had to give myself permission to step back a bit while managing his care more remotely.

While all of our family and friends agree that establishing my guardianship of Mike with the court system is the best choice, it has caused an irreparable rift in my already fragile relationship with our mother. As much as it saddens me, I have to continue to make sure that Mike's wellbeing is at the top of every. single. list. No matter how hard it is to say these things out loud, and no matter whose feelings are hurt, I will continue to advocate for him.

Craig Hospital has given their final "NO," which is absolutely heartbreaking because everyone can see that he has so much potential to thrive with additional rehabilitation.

Visits from friends have dropped even lower, and I can imagine this is contributing to his mental state as well. Please, please come to visit him. You can use the comment section here to get the information.

I also learned that Medicaid will not cover his next location, which will be a "final stop" at a long term nursing home, until his GoFundMe is below $2,000, so I've been scrambling to find things to use it on immediately instead of waiting for more concrete needs. I purchased a wheelchair and a wardrobe of ultra comfy, easy to pull on and off clothing, as well as some good sneakers. I also have to produce receipts for everything that comes and goes from the GoFundMe, and it's just frustrating to have to make choices on where to spend that money before I can better pinpoint exactly what is needed while abiding by their stringent policies on what is "okay" to purchase for him. I'll be sure to post a picture of his hot new wheels as soon as they get here. Thank you. Honestly. So, so much.

Moving forward, I will create something more along the lines of an Amazon wish list for those who would like to help so that GoFundMe and Medicaid can't prohibit your generosity from going as far as it can.

I'm applying for a couple different programs that might help me be able to purchase an accessible van for him, because one of the goals we set together was to get him to Denver Pride, an event where he always shone as a photographer. We would all love to just see him holding a camera and enjoying himself... but it also could be next year, considering he is still so easily overwhelmed.

Now he is in a temporary nursing home, and I'm going to go see him today and bring him some of those comfy clothes I mentioned. This will be the end of his rehabilitation period, and that is also just so very sad.

Well, I warned you. ;) Thank you again for all of your support and kind words. Please let me know if you can go visit Mike.


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