- His electric and acoustic guitars are now able to be set up along with his amp and his ukuleles are accessible so he has a little music corner. He meets with a Portland based musician once a week or so for music therapy which is funded through some folks affiliated with Doernbecher. He seems to enjoy her company and I hear happy sounds of music and conversation coming from the direction of his room. He's started practicing everyday and is working on some new songs again. "insert heart emoji here" :)
- Moving into the larger bedroom affords him the space of about a coffee table to do some physical therapy on his own. PT is no longer paid for through insurance so if he wants to continue to gain strength he has to do the work on his own. Micah has made a reminder chart on his whiteboard to keep him on track (making goals! A great sign!) and he seems dedicated to regular strength training and muscle endurance. He has some resistance bands and some small weights.
- Micah has attended church on Sunday a couple of times over the last few weeks and even gave his mom the elbow when it looked like she was using her phone during church. I was sharing something the preacher said that I thought was particularly meaningful. That's allowed, isn't it?
"FEAR IS THE DARK ROOM WHERE NEGATIVES ARE DEVELOPED."
- Pretty good, huh? And timely!
- Micah is showing signs of wanting to branch out. Gaining weight and getting stronger has played no small part in his overall attitude and mood. He's taken a few short walks outside (Hooray for the great weather!) and since his new room is right off the living/dining room we see him coming out to visit with the family more.
We started a You Caring account (that's like a Go Fund Me but less expensive) to help raise the funds needed to get Micah to the next level. You can check that out by clicking here. There's still a lot of research to do and we're all working together (Micah, his dad and I) to prioritize a list of needs to help Micah continue to grow and improve.
- His Physical Therapist provided him with some resistance bands but he has reached the limit of what those can do for him and it's time to add some aerobic exercise. We're looking into the best options. A peddling device of some kind has been recommended. Space constraints limits us so we're looking at everything from a stand alone peddler he can use from his chair to a full stationary bike. He's also ready for some heavier weights.
- Micah needs 6 liters of oxygen at all times to breathe easy. His insurance covers large and small tanks and a large floor oxygen concentrator and a portable bi-pap machine. This is great and has made all the difference in his daily comfort as long as he stays close to home. The portable tanks last about 3 hours - depending on how much demand he puts on them. If we want to take him out for a lengthy outing, say a day trip to a museum or the beach or shopping, we need to take 10-12 tanks. You always take twice what you think you'll need to be prepared for anything. And again - don't get to far from your vehicle where they're stored. Insurance won't cover a portable concentrator that he could carry on his shoulder so we're looking at purchasing one ourselves. This could open up a whole world of opportunities for Micah as he looks to add activities back into his life like jam sessions, worship team, college age outings with the church, family trips to the beach, college classes... you get the idea. The right portable concentrator for Micah would cost in the neighborhood of $2500 - $3000.
- Space - the final frontier. Our house is just too small and older, but not the good kind. It needs a lot of work (which Herb and I are doing as time and our personal funds allow) but it's clear we will need to either add on a space tailored to Micah's unique needs or move to something that has the space required. Preliminary estimates put adding on a room with the square footage necessary and a bathroom suited to Micah's fluctuating needs at around $25,000. That's a tall order. And there's a lot of steps before we place an order like that. Plans, money, permits, money, contractors, money. You get the idea. We'll get our facts together and try to make the best and most economical decision we can. A work in progress.
