Tonight's picture was taken in August of 2008. It was actually the first week Mattie was admitted to the hospital for treatment. It was a new and scary moment in time, that will never be forgotten. In fact, when we were first admitted to the hospital, we were put in a room that had NO shower. I lasted in that room one night. Then complained and we were transferred the next day to Room 10. Ironically we began chemotherapy in room 10 and Mattie died in room 10, 14 months later.
That afternoon, Linda (Mattie's child life specialist) set up an activity in the PICU hallway. She laid out paper on the floor and in no time, we were painting a huge mural. I am not sure where we would have been without Linda and Mattie's art therapists. They provided creative distractions that in the process these activities helped us feel "normal" and forget our fears for just a few minutes.
Quote of the day: The things you do for yourself are gone when you are gone, but the things you do for others remain as your legacy. ~ Kalu Ndukwe Kalu
I couldn't sleep last night. I think the stress and anxiety of my daily routine got to me. In addition, Sunny was up with diarrhea until 1am. I think by 3am, I finally fell asleep, just to get up at 6:30am. Needless to say, I am TIRED.
After getting my dad up, showered, dressed, and completed breakfast, he was off to his memory care center. With him in a safe place, I drove my mom to Rockville, MD (about a 45 minute drive each way) for a transcranial sonogram. When I moved my parents here, the focus was on my dad. I was aware that my mom was having issues, but I couldn't tease out whether this was from exhaustion and caregiving, or whether she too had an issue going on. I feel quite certain she has a neurological issue and now she are undergoing testing to determine what it is.
Both my mom's primary care doctor and our initial neurology visit indicated Parkinson disease (PD). PD is a slowly progressive disorder that affects movement, muscle control, and balance. Part of the disease process develops as cells are destroyed in certain parts of the brain stem, particularly the crescent-shaped cell mass known as the substantia nigra.
Today's transcranial sonography includes the Substantia Nigra, I am hoping this will be useful for the differential diagnosis of Parkinson's Disease versus another neurological condition that has parkinsonian symptoms. It never dawned on me that my mom would be freaking out over a sonogram. I don't mean waiting for the results, I mean having to endure the actual exam. I say this because to me a sonogram is the least noxious of testing one can take.
Fortunately I advocated to go back into the testing room with her and the tech, and the tech allowed me in. When my mom is stressed out, she can get snappy and initially was giving the tech a very hard time. I stepped in and served as interference. Thankfully after about 35 minutes the test was over and hopefully we will get results in a few days.
Here is the procedure for the test..............
- The test was performed by a specially trained technologist and will be interpreted by a neurologist.
- My mom was lying on a padded examine table
- A small amount of water-soluble gel was applied to her skin. Specifically it was applied to the back of the neck, above the cheek bone, and over the eyelid. These are the blood vessel sites that supply the brain. The gel did not harm her skin or stain her clothes. Nonetheless she complained about it all 40 minutes.
- A small microphone-looking-like device called a transducer was held in place on the exam area. The transducer sent high-frequency sound waves through the brain and captured the returning blood flow information. The ultrasound signal was turned into graphs or color pictures that were shown on the display screen.
After the testing, I thought my mom would want to walk the shopping mall and go to have lunch. I was wrong on both counts. That was enlightening to me, as her energy level is not the same (as even a year ago) and every activity other than the usually structured ones produces anxiety.
Instead, I took her out for frozen yogurt, which she seemed to like. When we got home, Peter had just picked up my dad from the memory center. So I went from one activity to the next. Before I even let my dad get comfortable, I had him walk ten minutes in the house. I am determined for him to meet his 1,000 daily step count. So far I have been successful for ten days! I celebrate the small wins around here.
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