City sidewalks…

We’re back from Ben’s latest steroid treatment in New York. He received three days of IV Solumedrol, and we will follow up with ongoing weekly doses of Prednisone at home. Because of the massive doses he got, he had some side effects: puffy/red face, weepiness, and a bad taste in his mouth. Nothing major, though. He lost his IV twice, and getting it reinserted was pretty rough on him, but he was brave. His doctor stopped by to see us and remarked how good he looks. I asked her if she has any idea why the steroids are helping him, and she said she doesn’t. (This is why we cant get the treatment closer to home. Without a real diagnosis, it is an experimental treatment, and doctors in Florida aren’t willing to do it.) But they are helping, and our hope is that they will continue to. This has, by far, been the best year of his life.

He hasn’t had any major regressions since his last steroid pulse in January. His tics have been minimal, whereas before, they had him contorting terribly. He’s learning well in school and staying on task. He has found a sense of humor, and we are able to communicate well with him, for the most part. He still struggles in many areas, and his vision will not improve, but for now, he is in a pretty good place.

Hospital stays in New York are a different experience. We had a roommate – a little girl around two, and her parents. She was very delayed, so it was like having an infant in the room. Her mom played some of my favorite praise music, so it wasn’t all bad. Catching an elevator there was harder than catching a cab at rush hour. It was insane. There were four elevators, and after waiting for 5-10 minutes, we often had to let them pass us by, as the passengers are already packed in like sardines, and we couldn’t possibly squeeze in. So we’d wait another 5-10 minutes. Generally, that wasn’t a big deal, as we weren’t in a rush to go anywhere. But on occasion, we wanted to go to the cafeteria, or to a floor that had vending (our floor didn’t), or to pick up food we’d ordered in, and it could be a hassle. We thought we had lucked out on Saturday, when the elevator that stopped on our floor (9th) was almost empty. We jumped in, and a few floors later, we realized all the buttons were lit up and we were stopping on each floor. We’d gotten in the Shabbat elevator on a Saturday. On the Sabbath, that elevator is programmed to go straight to the top floor, then stop on every floor on the way down, so Sabbath observers don’t have to press any buttons. Ah, well, as least there was breathing room for a change.

We arrived in the city the day before Ben’s admission, with plans to go to the tree lighting at Rockefeller Center. We got to Rockefeller around 2:30, as we’d heard we needed to get there hours in advance to have any hope of seeing anything. We found a decent place to stand, and were committed to staying there for the 4+ hours until the show started. Then the cops made the group of us move. So we found another good spot. And the cops made us move. Found another spot. That one was for VIPs only. Another spot. Cops. Moved. We finally found an acceptable spot – acceptable to the cops, but we couldn’t see a thing. As in, the tree was around the corner of a building. Ben was fussy, and we were all freezing, and staying would only accomplish bragging rights … so we gave up. (Several New Yorkers have told me since then that unless you know somebody, there’s no way to get near the ceremony.)

Across the street was the American Girl store, and Emma had saved up to buy her own doll, so we went there. On the bright side, it was not crowded at all, as everyone was across the street trying to see the tree lighting. Emma selected her doll, and had enough money left over to get the doll’s ears pierced. She was in heaven in that store! It was so fun to see her traipsing all over. I felt a bit like a little girl, myself. I almost wanted to get a doll of my own!

I wanted to go to Magnolia Bakery afterward for dinner (yep, cupcakes for dinner), but we couldn’t get there. We could see it. It was right across the street from us. But between the tree lighting crowd (half a million people) and street closures for the Presidential visit, we couldn’t get there. We wrapped up the night watching the tree lighting on tv in our hotel.

The next day, we took Ben to the Times Square Toys R Us to let him buy a video game for the hospital. My kids love that store. We hit the storefronts of Macy’s and Lord & Taylor, and later went back to Macy’s to get a blanket for Jared to use at the hospital. Macy’s was beautifully decorated inside, and I especially liked the wooden escalator that made a delightful “clickety-clack” noise all the way down. It’s the little things in life that make me happy.

Ben was admitted the next day, and the fun screeched to a halt for a few days. That was why we were there, after all. I am so thankful that this treatment is available, that our insurance is covering it, that our doctor is willing to administer it, and that my folks so generously finance the travel expenses. We are so blessed. Oh, and I’m thankful for a husband who lets me drag him all over the city. He’s so good to me!