This week, like many weeks, found me making an assortment of phone calls for Alex, trying to get appointments arranged and checking on various things he needs. For example, on Monday I had to call the pharmacist about one of his medications that seems to be on a different refill schedule than his other medications. Thankfully, she is very helpful and pleasant, and she went back through the records to find the original prescription, confirming that I would need to call his psychiatric nurse practitioner’s office to have her authorize a refill. When I called her office, I also set up an appointment for next month for his six-months check-up. After doing that, I remembered that we already had an appointment scheduled that afternoon with the case manager who oversees his state disability funding and his behavior therapist to work on his annual report for the state to continue services. I called the office again, rescheduled his appointment for the morning instead of the afternoon, thinking that would create a busy, yet workable day.
On Tuesday, his behavioral therapist came for her weekly session, and as usual, I flew around the house making sure it looked presentable for her visit. In addition, I wrote his weekly report for her, updating her on behavioral issues to keep her apprised of his progress and any issues she needs to address with him. On Wednesday, we took him to the dentist, which is something Alex actually enjoys “one hundred percent,” largely because his dental hygienist is wonderfully sweet and patient with him. Also, we have been blessed that Alex has never had any cavities or any other dental issues, so his visits to the dentist have just involved having his teeth cleaned and checked. Because of his anxiety issues, we hadn’t taken him to the dentist for over a year. Unfortunately, they discovered that he has some cavities in his back teeth that will need to be fixed, and the dentist wants to do this under general anesthesia in the hospital because of Alex’s anxiety and sensory issues. Although we would rather Alex didn’t need to have any work done, we agree with the dentist that this is the best way to handle the situation to avoid upsetting him.
On Wednesday, I received an e-mail from the intake coordinator from the agency where we are on a waiting list trying to get Alex into a day program. She was notifying us that she would be taking a different position within the agency and would be turning over Alex’s file to another intake coordinator. Later that day, she called me to discuss respite care services the agency could provide for us. After not having heard from her in months, I was surprised that she contacted us to offer assistance. Nonetheless, I appreciated that she explained the various services we are eligible to receive, and I was able to remind her that we were most interested in getting Alex involved in the day program, which apparently is still on hold at the moment. Fortunately, we’ve become good about waiting for this after over a year of being on the waiting list.
On Thursday, Alex’s dentist’s office called me to let me know they had set a date for his dental appointment at the hospital next month. In addition, he must see a doctor affiliated with the hospital where the dental work will occur the week prior to that appointment to make sure he is healthy enough for the anesthesia. I appreciated that she had scheduled this for us, as well, but it was the same time as the appointment I had rescheduled with his psychiatric nurse practitioner, which meant calling her office to change his appointment again to the following week. Fortunately, we are able to take care of all these various appointments before Ed and I have to go back to our teaching jobs.
On Friday, Alex decided that he needed to go to the eye doctor, probably because Ed and I have both been to the eye doctor for our annual appointments this month. Even though all evidence shows that Alex has perfect eyesight, he insists that he should have his eyes checked. After he pestered me repeatedly about making an appointment, I called the optometrist, and Alex is delighted that he will see him tomorrow morning. Ed and I are praying that Alex will be cooperative for the eye tests and that his eyes are as healthy as we think they are.
Yesterday, after my mammogram, I spent time researching a new antifungal drug Alex’s doctor has prescribed in yet another attempt to get rid of the thrush infection of his mouth that we have been dealing with for over a year. With all the medications Alex takes to keep him calm, adding anything new to the mix makes me a little nervous and sends me to websites checking for possible drug interactions. Convinced that the new antifungal should be safe, we will start that medication today and pray this will be the magic bullet that finally eradicates the stubborn candida fungus in his mouth.
Aside from my role as Alex’s personal assistant in setting up and coordinating appointments with various professionals who help him, I’m also his social director who comes up with daily outings to keep him entertained and makes sure he has a fun summer. This week, we went to two outdoor band concerts in the park, visited Bass Pro Shop for the first time, had dinner at Taco Bell twice so he could enjoy his favorite Cantina Bowl with rice and beans, took him to an arcade to play video games of Wheel of Fortune and Deal or No Deal, walked with him on the trails of a nearby nature preserve, got him apple chips and a soft drink at the Target Café, and took him to the Indiana Dunes State Park beach where he waded in Lake Michigan. Certainly, we had a busy week, but an enjoyable one, too, even thought it was not the relaxing/home project one suggested by the x-ray technician who did my mammogram. However, this week reminded me that I must be at my best so that I can take care of Alex’s needs, and I’m thankful for my health, even if that means enduring those annoying mammograms. While I wish my house were more organized and that I had more time to read for enjoyment instead of research, I am grateful to have my summer “off” so that I can devote more time to Alex, making sure that he, too, is healthy and can enjoy life to the fullest.
“Work willingly at whatever you do, as though you were working for the Lord rather than for people. Remember that the Lord will give you an inheritance as your reward, and that the Master you are serving is Christ.” Colossians 3:23-24