Therapy at Brilles
Taylor’s days are structured in layers. Medications and meals make up the primary layer. Outpatient physician visits are the second layer. PT, OT and ST squeeze into what remains. Any leftover time includes walks through the neighborhood, non-PT trips to the gym, library runs for new episodes of ER, time in the kitchen assisting with cooking or organizing, and trips to the store.
There is a gate connecting our set of condos to a shopping plaza including the grocery/pharmacy, bank, restaurants, etc., so most often the store runs are on foot or via a cruise in the wheelchair.
The medication schedule is somewhat complicated, but only in that the majority of meds are endocrine system support meds, which don’t particularly like to be mixed with food, other meds, or requires quite a bit of water with their dosing. Fluid intake is closely monitored because of the diabetes insipidus – which is responsible for his vacillating sodium levels. Sodium has remained stable since discharge from the hospital with the current desmopressin dose and water-intake equation. As long as nothing is tweaked, Sodium should remain stable.
He has no pain these days, so none of the pain meds are necessary other than Tylenol from time to time to help cool rogue fevers. Multi-vitamins with extra vitamin C for eye health and Pepcid for his stomach are all that remain.
Taylor’s vision has not fully returned in his left eye, and when it comes, it tends to be in the form of things that “look trippy”, he says. So for now the exercise is for him to point when something comes into “vision” and describe what he thinks it may be. Then walk to where the object is and let him check it out with hands, etc. He keeps a good sense of humor about this, as a shrub may look just like a tent, or a trash can like a waterfall. This is pretty common with vision loss, and statistically only 10% of those with vision loss are truly blind.
New information on the surgery to repair the left eye socket, to reposition that eye:
Dr. Joganic – the cranial floor plastic surgeon that will be performing the eye-orbit, cheekbone and jaw surgery, does not want to perform that surgery until all issues with cerebral spinal fluid leaks are completely resolved, and Taylor has healed from the previous craniotomies. He feels six months from now is a good period of time for Taylor to heal, and equilibrate from all the trauma and surgeries.
Outpatient therapies will continue through December 31st, with a roll-over of days available Jan 1.
The apartment is rented through December 31st, with rent doubling at that time for winter season rates in Phoenix, so there will be a move. I will be moving from Los Alamos to Phoenix, as my job in Los Alamos as officially ended. Details are still being hammered out.
Minnesota is still in the horizon, as that is where Taylor wishes to ultimately land.
I’m pulling together another journal entry now, which includes excerpts from a book T and I are reading: “The Brain That Changes Itself. Stories of personal triumph from the Frontiers of Brain Science”.
The included pic is of Taylor and his OT, Laurie, taken Thursday.
