I don’t know how to make this post eloquently so I’m just going to lay it all out on here and hope it reads ok 😅
Sometimes its hard to post about whats going on when there is still so much up in the air.
Sometimes its hard to post what we need when we don’t know yet. Not only because our brains are still super swirly with all the new information, but also because Bradys’s function is still changing, so we don’t know what the end result will be and, therefore, we don’t know what his needs will look like.
Sometimes its hard to post because you are all SO QUICK on the draw to jump to fulfill our needs, which is incredible and humbling and just something I don’t even know what to do with 😅 It is truly a beautiful problem to have, believe me. I get nervous to post for fear that people think I’m hinting when I’m not.
Anyway. Caution to the wind. I can’t be bothered to sift through all of the details at this point so I’m just going to throw a bunch down.
Get ready.
Before all of these changes, Brady was meant to start up another chemo cycle this week. Tuesday, specifically. However, its been made clear that the course of chemo he was on was doing all kinds of squat, so we were told the plan would change. His standard pre-chemo appointment is today, so hopefully he actually sees his oncologist instead of whoever else, and hopefully they did, in fact, make a new plan. Not sure yet if he’ll do the five day cycle like he’s done for the last six months, or if they’ll do chemo daily along with his radiation like they did freshly after his brain surgery. Radiation is also supposed to start this week. We fought ALL last week to get things moved up timewise, and his current first treatment is on Thursday, but they did say last week they were hoping to get it started on Monday or Tuesday. So we should know today what the plan is for both schedules and treatment plans.
With Brady’s changes in function, his mobility is super different and a lot less. He has no use of his legs anymore. Like. None. He no longer wears the leg brace that helped him stand. He cannot stand at all. He cannot bear weight at all. He can’t sit up unsupported for long at all. His abs have quit. His legs have quit. His bladder and bowel function has also changed, so he has new supplies and systems in place to make that all run smoothly as well.
So with the total inability to stand, much is changing in our life. Brady got the last of the drawer handles placed in the island yesterday, and I’ve been reorganizing the kitchen so he can reach as many dishes as possible. No more wall cabinets for him! Today I’m hoping to move around the pantry so he can reach more things.
Ok. A couple of big dreams.
Getting Brady into the garage. Right now he goes down the ramp in the front and around into the garage, and that works well, but we definitely want him to be able to go into the garage. So we’re looking into funding through some programs to see if we can get a garage lift installed. If so, we’ll need to rebuild the entrance platform in there also, as it is not even close to level with the door. If and when this time comes, we need to clean out our garage. Lots will need to be hauled away, like the giant wood box the stove came in, and some old cabinets. We’re not quite ready for that. Warm weather will help.
Renovating our bathroom. This may not go down anytime soon, but as I said – it’s a dream. Brady can barely get into our bathroom. Its so teeny, which was fine when he could walk, but is next to impossible to make work when his chair has to come in with him. The chair takes up the bulk of the floor space in there, so getting to and from the toilet or the shower is REALLY challenging. It can be done, mostly, ish, but the dream would be to get a smaller vanity, move the toilet, and put a bunch of storage above the toilet. We can’t lose all the storage space, since Brady has lots of med supplies (ie catheters and everything that comes along those) that need somewhere to live. So. Thats the dream. New en suite.
Modifying our bus so Brady can get into it. I mentioned this yesterday. It is a lofty goal, but I do believe City Hospital rehab will have ideas and resources.
Smaller dreams.
Some accessibility things. We are thinking a LOT about the lake and how different its going to be. There are a few things that will make moving around on the gravel easier. A Freewheel is a pretty cool thing that I think we’ll bite the bullet on sooner than later. It lifts up the castor wheels in the front of the chair, but is still self propelled. The castors are what get caught on everything and have people falling out of wheelchairs. Brady also needs to order armrests for his chair. They would make transferring out so much easier. And grab bars/rails/handles to install in vehicles, also.
Needs.
We need to put grab bars up in the house. We have them, we just need to pick their spots and install them.
We need a railing on our front ramp, but that will come a little later after *drumroll please* our ramp is redone! 💜 Thats a gift we’ve been offered, which is gigantic and humbling. When the new ramp happens, so will the railing. We have purchased some of materials for the railing already, but since it will be much longer in the nearish future, we’ll have to snag some more soon. Thank goodness they stock it at Zaks!
We need to finish up the whole stove project, which was SO fun at the beginning and now just feels like something dragging :/ Which SUCKS. We have a range hood on order and when that comes, we have willing hands ready to install it and finish up the project. But man. Its a bummer its dragged the way it has and it feels a lot less fun now. Ah well. Still incredibly grateful for it 💜 Not every detail has to be exciting or thrilling.
Brady needs to finish the winch system he started building in his minivan. He had help getting it going, and he will absolutely still be asking for help to get it finished. Just have to prioritize.
Oddly enough, we need a wheelchair 😅 Hear me out. We had a loving friend come and get our stair lift installed and working, which is HUGE. Brady can actually be in our basement again. He could even tuck in the downstairs kids! Except that he can’t move around once he’s down there! We could haul his chair down, yes, but our stairwell is quite narrow and the lift is a decent size, so it would definitely be a job for a second person, and it may even need to be disassembled to get it down there. So the hunt for a basic folding wheelchair is already on! I’m on FB Marketplace every day, and I’m sure we’ll find one soon enough.
Ok. Thats all I can think of for now. Its a lot thats swirling in my brain, but now its all in one place, lol! If anyone has any bomb ideas for making life more accessible, please feel so free to throw them our way! We are not above spitballing. We are not too proud to hear from others! Positively everything in our life is about adapting right now, so throw out your best ideas! We need them and want them!
