An Update as of 3/3/13

We have now reached the six months mile post in this healing adventure. We had a discouraging moment on Thursday when Bob broke his month-long winning streak and had a full-blown seizure.

Bob had gotten up early that morning and had been working intensely for several hours because he finally had the tools he needed to get all of our electronic devices talking to one another. On top of that, we were packing to leave town for a week to visit Bryn and Andres in Las Vegas, with the time pressure of a flight to catch in DC. I came in from taking the final load to the car, singing out that I was ready to go, and I found him standing and staring in the hallway, near the top of the same flight of stairs that he’d fallen down on August 30. I was so thankful in that moment for the gate that we’d had installed at the top of those stairs! I went to him to hold him and he collapsed into my arms. I was able to gently lower him to the floor, where he laid for several long minutes until he began to regain consciousness. It worried me to think of what a fall he might have taken if I had not been right there at that moment.

After Bob began to emerge from his confusion after the seizure, I was uncertain about whether to postpone our trip by a day or to press on. I called Bryn and she thought that because the first leg of our journey was a two-hour drive in which Bob could rest and/or sleep, that it was worth continuing on, knowing that we could simply stay with Evan and Michelle overnight in DC if there were any further problems. So off we went, and other than having to maneuver around DC traffic at rush hour, everything went smoothly for the rest of the trip. We both slept well on the plane and we arrived in Las Vegas that evening in fine shape.

Bob did have one additional neurological blip on Friday when we got off schedule with eating so his blood sugar got low, and his left leg gave out on him when we were out for a walk. Both of these incidents have been potent reminders of the ways that we need to make different choices in the balance between self-care and the very enticing prospect of getting just one more thing ticked off our task lists!  

We have been very much enjoying our time with Bryn and Andres. The weather has been lovely, so we have enjoyed relaxing in their backyard. Yesterday, we went hiking on the red rocks of the Valley of Fire National Park. It was spectacular in its beauty! In the evening, we went to the Stratosphere and had a delightful dinner overlooking the city with Bryn and Andres’ friend Tracy. Afterwards, we enjoyed the Frankie Moreno show, thanks to Tracy, who knows Frankie and scored some last minute complementary tickets! To get to the restaurant and show we had to walk a short distance through a casino. That is the one thing that I had hoped to avoid while here, because of all of the blinking lights and noise. But it turns out to be harder to avoid than you’d think, as there are even slot machines in the airport! And fortunately, Bob did just fine. Note to self: what a difference staying on a regular schedule of sleeping and eating can make in terms of healing and neurological health!  

These latest episodes have again raised the question of whether we have done enough immune suppression to have reset Bob’s wayward immune system to keep it from attacking his brain. We’re hopeful that these were isolated incidents and that he is back on track to a calm, healthy brain!

Thank you for your continued caring, kind thoughts and prayers. 

-Megan