I came down with whatever bug Lin had after I got back home, only I had it in the super size version. I am still struggling with it.
One the Tuesday after our trip, I felt really weak at work. When this happens, I try not to think it could be my heart, because I want to believe that my heart is "fine" now.
On Wednesday, I was a bit worse, but my office was hosting our Agency-Wide staff retreat near my town. Although I had planned to help set up, including decorating the main meeting room, I took about an hour at home to rest instead, and came up to the retreat later. I am sure my female coworkers were glad to have me miss the decorating session, since that is not my forte'.
I did fairly well that evening and went to sleep early at the retreat center. I should add that this location is at a high altitude near a ski resort. The next morning we had a ropes challenge course to help with team building. We had three options from which to choose, and had pre-selected these a few weeks earlier. The choices were: 1) A non-physical mental challenge indoors. 2) A medium-level challenge course at ground level. 3) The high ropes course way above the ground with significant physical challenges.
Because I wanted to keep the attitude that my heart was "fine", and on the evidence many months of building my endurance up by walking to get ready for the wish trip, I had chosed option #3. Even though I was feeling sick, I did not want to "wimp out" on this choice so I stuck with #3.
I did fine until I had climbed 50' up the tree to reach the high wire. I did not quite make it to the wire, when I felt pressure in my chest and sudden weakness. A sensible person would have backed out at this point, so naturally I refused to quit. I yelled down to the facilitator that I was feeling chest pressure. He asked what I was going to do, so I said, "Take the next step." Then he said, "What about after that?" I answered, "Take the next step after that." He asked if I was making good choices, but I ignored that (since I obviously wasn't) and pressed on.
Once I got my feet on the cable, I was determined to cross to the other tree. By the time I made it across, I was shaking like a leaf (and not from fear). I felt to bad physically to be able to think about how high up I was. I could barely stand when I got down to the ground. 
My condition began to deteriorate after that, so I think I must have overstressed my heart due to the respiratory infection. See what my wife has to deal with. I spent from late Thursday afternoon until Monday morning in bed. I made it to work the next Monday, though I was quite weak.
On Tuesday, we went to Children's Hospital in Spokane for Lysi's twice-yearly cancer scans.
One the Tuesday after our trip, I felt really weak at work. When this happens, I try not to think it could be my heart, because I want to believe that my heart is "fine" now.
On Wednesday, I was a bit worse, but my office was hosting our Agency-Wide staff retreat near my town. Although I had planned to help set up, including decorating the main meeting room, I took about an hour at home to rest instead, and came up to the retreat later. I am sure my female coworkers were glad to have me miss the decorating session, since that is not my forte'.
I did fairly well that evening and went to sleep early at the retreat center. I should add that this location is at a high altitude near a ski resort. The next morning we had a ropes challenge course to help with team building. We had three options from which to choose, and had pre-selected these a few weeks earlier. The choices were: 1) A non-physical mental challenge indoors. 2) A medium-level challenge course at ground level. 3) The high ropes course way above the ground with significant physical challenges.
Because I wanted to keep the attitude that my heart was "fine", and on the evidence many months of building my endurance up by walking to get ready for the wish trip, I had chosed option #3. Even though I was feeling sick, I did not want to "wimp out" on this choice so I stuck with #3.
I did fine until I had climbed 50' up the tree to reach the high wire. I did not quite make it to the wire, when I felt pressure in my chest and sudden weakness. A sensible person would have backed out at this point, so naturally I refused to quit. I yelled down to the facilitator that I was feeling chest pressure. He asked what I was going to do, so I said, "Take the next step." Then he said, "What about after that?" I answered, "Take the next step after that." He asked if I was making good choices, but I ignored that (since I obviously wasn't) and pressed on.
Once I got my feet on the cable, I was determined to cross to the other tree. By the time I made it across, I was shaking like a leaf (and not from fear). I felt to bad physically to be able to think about how high up I was. I could barely stand when I got down to the ground. My condition began to deteriorate after that, so I think I must have overstressed my heart due to the respiratory infection. See what my wife has to deal with. I spent from late Thursday afternoon until Monday morning in bed. I made it to work the next Monday, though I was quite weak.
On Tuesday, we went to Children's Hospital in Spokane for Lysi's twice-yearly cancer scans.
She got pretty agitated and tense, but did not even cry. While waiting for the I.V. she distracted herself by operating EVERY possible lever on her hospital bed. We knew there was one nurse there who would not stand for that, but we just kept a lookout for her. I felt that it was helpful for Lysi to keep her mind occupied. 
(from the Wish Trip) 
and her Starbaby doll (who has been with her at every scan and surgery since birth) around in a little toy car or wagon. We also watched bit of a Winnie the Pooh video about Piglet.
There was no pool (Lysi loves the water) and Lysi was really bummed when she was told she was too young to use their exercise equipment. She was allowed to go in with Lin and I to check out the exercise room,
though and was allowed to do the sit up map. We sat in the hotel parlour for a bit and enjoyed the view out the window of autumn colored trees blowing in a strong wind. Then it was off to our room to watch TV and rest.
She tried really hard not to wiggle, and was a trooper. We did not see anything showing up on the scans. After this, we went to the oncology clinic. The doctor said that her CT looked fine, as well as her blood work. She explained that the MIBG results would take a few days but that there seemed to be no cause for worry. Lysi had grown more rapidly than they would like. This is due to her having no adrenal glands. She takes shots to slow down this precocious development because it could seriously limit her long-term growth and her eventual stature.
I still get chills just thinking about how wonderful the experience of visiting Orlando was. Even after all of the wonderful stories we heard and our high expectations, I was still surprised by the joy, beauty and warmth that surrounded us during this trip. 
I ask you what you'd think if Lin did that!
