An In-N-Out Outing

We have started contemplating a trip up to our house in the mountains because Kevin has been doing so well and is relatively stable. It is usually pretty quiet up there this time of year (between summer and winter resort seasons), so it might be a relaxing change of pace for all of us. Plus, it will be an emotional achievement for Kevin to make it back up to the mountains; we used to go up there every winter weekend when we were young, and now he hasn’t been there in almost two years.

The only thing that Kevin is concerned about is sitting in the car for over 4 hours. He has regularly been in the car for 20 minutes each way to and from outpatient therapy, but before yesterday, he hadn’t been in a car for longer than that (besides in a gurney in an ambulance when he was in much worse condition, which is a whole different situation). We suggested we take a car trip longer than 20 minutes and shorter than 4 hours to show him that he was able to sit in the car for a longer period of time. We tried to think of destinations about an hour away. I realized that the In-N-Out in San Jose was the perfect distance. Also, that trip came with a reward of a Double-Double animal style and a chocolate shake! Kevin breezed through the car trip without any problems, enjoyed his lunch, and was perfectly fine on the drive home. His confidence is boosted and he proved that his trunk strength is such that he can sit in the car, even on Highway 17 with all the winding turns, for longer than 20 minutes. We now have a tentative date in a couple weeks to head up to the mountains, and we’re looking forward to the trip.

The steroid taper is continuing to go well; with the rate things are going, we might have him off the steroids sometime in the next couple weeks. It will be the first time since November that he'll be off oral steroids!

There are a few behavioral signs that have shown us Kevin must be feeling better. On one of the warm nights this past week, we had a family dinner outside on the deck. At the start of the evening, Kevin was hesitant about eating outside because he claimed he was tired, but by the end of the meal, he was joking around and telling us stories about high school and college. The song “Roxanne” came on the radio, and Kevin said, “I have two stories about ‘Roxanne.’” He proceeded to tell us both stories while also doing a nice rendition of Sting’s lyrics. The fact that he had enough energy after eating to tell relatively long stories, laugh and sing signifies to us that he must be feeling a bit better. Simultaneously, he has been growing more stubborn and argumentative, which has always been Kevin’s personality. While it drives us up the wall at times, we take it as a sign that he’s improving, because when he was feeling worse, he didn’t have the energy to argue with us. Therefore, the stories and stubbornness remind us of how Kevin acted from age 1 to last November, when he got sick. We’re viewing these behavioral changes as positive signs that his energy, strength and stamina are returning.

Thank you to all of you for your love, thoughts, prayers and support. Kevin has improved a lot over the past few months, but he still has a long way to go and needs just as much support as ever. We are so lucky to have you all as a support network—thank you for doing such an amazing job.