Well, the time to go to Stanford and see world renowned narcolepsy expert, Dr. Minot finally came last week. Vand'n was so excited he couldn't sleep the night before (crazy I know, but it's true). He had his travel bag packed on Saturday for our flight leaving Tuesday morning. There were some tough decisions made about what toys and books to leave behind, but he powered through and had it finalized on Saturday, except for his treats which he picked out Sunday night - again, for our Tuesday flight.
One thing Deidre had told him not to pack was his Ben 10 shirt (which he seriously wears 5 nights a week). This is only relevant, because as we were going through security and he realized that they were going to X-ray his bag, he grabbed Dee and told her in a very serious, and scared voice that he had snuck the shirt into his bag. I don't know if he thought they would get mad because it has super powers or what, but it made for a good laugh.
Once we were on the plane, and buckled in, we had to wait on the runway for about 20 minutes, and that was it for him. He was asleep within 10 minutes, so he missed his first takeoff. When he woke up, he was very excited to be in the air and see the clouds out his window. He didn't stop asking "Mom, what's that?" for the rest of the flight, while blocking the window with his head so she couldn't see past it. This is when he busted out his first Fruit-by-the-Foot and informed us that he had four of them (one for each plane of the trip. Remember this because it comes up later).
We landed in SLC and had to quickly switch planes. Thank you to Dee's sister Mandi for letting us borrow the jogging stroller or Mr. Slow walker would have made us miss the flight. He was able to stay awake until take off and he played it cool by acting like he had done it before. The flight was a little longer, and he did get a little agitated that it was taking so long, even though he slept for an hour of it. Mom also managed to dump her entire drink on the aisle during this flight. So fun!
We landed and got our luggage, which Van insisted on dragging around. As we were walking past all the rental cars he started begging for either the Camaro, or a van. We found our car and the fun began, because that fancy jogging stroller wouldn't fit in our fancy Hyundai Accent. After I dismantled the whole thing and got it to fit, we went to get pizza. Vand'n had two huge slices and we went to the hotel. He fell asleep between the pizza place and the hotel, so he was very suprised that he magically woke up in a hotel bed. We were just glad he didn't panic because he didn't know where he was.
About two weeks before we went, I asked Vand'n if he wanted to go to a big league game and he wasn't too interested, so I moved on and tried to find other stuff to do. Wel, as soon as we landed, guess what he asks? "When is the game Dad?" Well, I pulled my best audible and found tickets online, and we went to the game tuesaday night. I wasn't paying much attention to anything, other than just find some tickets and we will go. So we get to the game at Oakland Colosseum between the A's and Angels. We find our section right on the first base line, and start going down. We were on row 9. It's not til we get down there that we realize we are behind the dugout and row 9 is really only four rows back from the Angels. We are twenty feet from Hamilton as he throws his gum wrapper at Trout during the national anthem. The game was good and Vand'n was enjoying himself until he got tired in the fifth. So Dad held him for a nice little 45 min nap while Mom and Dad got to pretend they were on a date! A's won on a walk off single.
We may have got temporarily misplaced (read: LOST) on our way home since both phones died and we forgot the car charger didn't work. So as we meandered our way through Mountain View passing google security trucks, Vand'n would panic a little when we would say, "I think it's that way" or "Are you sure?" Poor guy pays too much attention. We got lost in northern Mexico (southern cal) with denim when we went to Disneyland when she was about 4, and she didn't bat an eye.
We finally wandered back to the hotel about 1, and went to bed. We woke up, got ready, and went to breakfast at our new favorite fast food joint- Jack in the Box- on our way to the Dr. We found the building and went inside. This was fire drill day and the receptionist told us to just stay put, but a scary lady came yelling at everyone that they had to go. So while we were in the parking lot, Mali (Dr. Minot's assistant) called and told us to get back in there. So fun!
Once we finally got to the room, and met Mali, something just felt right. Everything slowed down, and we knew we were exactly where we needed to be. We first met with a Dr. who is doing some training under Dr. Minot. He asked us a bunch of questions, and got all of the history. He really took his time, to fully understand and make sure he had everything straight in his notes. Dr. Minot came in after about 30 minutes with the first Dr. and brought in 3 of his research team. So we then spent about an hour talking its him about the medication Van is on, and why. He then changed one of the medicines and explained exactly why, right down to the cell reaction that will help with his cataplexy.
We told him about Dr Pfeffer in SLC who diagnosed him and believed that it was from the H1N1, and that she had 3 other children just like Vand'n. When we told him that she was told by the CDC that it was impossible that it was triggered by the mist vaccine, he looked dumbfounded. He told us that his thoughts are that there is a third group of cells that are being affected by the H1N1 and those cells are then the ones killing the neurons that keep us sleeping normally.
Mali then came in and as we were talking she pointed out that she only has 4 doctors in the country she trusts when they send referrals, and Dr. Pfeffer is one of them, so we were blessed to end up there for the sleep tests. We learned so much in our two hours there. We learned that only 25% of the population even has the HLA gene that is tied to narcolepsy (without it, it is close to impossible o have narcolepsy). We learned that they spend a lot of time correcting misdiagnosis of narcolepsy. Mali said that most families of, or people with narcolepsy usually know more about the disease than most sleep Doctors. I think they learned from us also. When Vand'n was having a cataplexy attack from watching ice age, the students were watching him very closely almost as though they hadn't seen many in person.
After the appointment, Mali took us to see Dr. Minot's dog, who has narcolepsy with cataplexy. Vand'n was pretty well shut down and tired by this point, so he wasn't too animated, but I think he appreciated knowing he isn't alone in the things he is experiencing. Mail gave us some Wake Up Narcolepsy SWAG and we said good bye, and saw the worlds biggest toilet on our way out.
We walked out of there on cloud 9. We had answers to questions. New direction with medications that had never even been mentioned to us before, and hope and excitement for the research being conducted there. Anyone with Narcolepsy that has the opportunity to go there should take it.
This is when we decided to hit up Fisherman's Wharf and see what was going on. Van was out as soon as we hit the highway to San Francisco. I was amazed by how the houses are just stacked on top of each other on hillsides that are too steep to even sled down in my opinion. We started out by going to lunch at a place with an arcade. After he won his tickets, he had the hardest choice of his life: spider ring or 1 tootsie roll and a sweetart? Of course, the candy won, and the $10 treat was gone by the time we hit the door.
It's tough being a kid with all these choices.
We walked out of the restaurant straight into a magic show. Vand'n laughed at some of his jokes, and the Cataplexy almost made him fall over, but he caught himself. We went to check out the Sea Lions and look at some island called Alcatraz through the binoculars next.
At this point, his hunger got the best of him and he asked for some mini-donuts from a place we had passed earlier. So we went and bought a bucket of mini doughnuts, which they bathed in cinnamon-sugar (aka Vand'n's Catnip). I was able to sneak 3 of them out of the bucket and Dee got her hands on 3 of her own. Within about 15 minutes of walking around, Vand'n had eaten the other 15 or so doughnuts.
After the doughnut massacre, he fell asleep in the stroller, so Dee and I went on a date down the boardwalk. First we watched a wedding (Elvis performed the ceremony and sang the first song while they danced). We wandered down to an old battleship and submarine, and found an arcade where all the machines were pre-1940 and all worked. Then just as we were walking past the "Ripley's Believe it or not" museum he woke up to see a huge Optimus Prime made from car parts in Thailand.
After we packed up, we went to Chinatown to just drive through and see what it was all about. Well, all I can say is that driving in San Francisco is a real great experience if you want to shave a few years off your life. Its was insane how tight the roads were, and people don't even bother stopping to look most of the time. My biggest scare was turning up a road just to discover that I was on a track. I was sure I had messed up until I figured out that the cable cars drive on the same roads as the cars do (they should really cover this stuff when you rent a car there). We started heading back to the hotel about 7 and had dinner. We were all beat so we called it a day.
On the day we went home, it was a pretty standard trip home. Here are some highlights:
Vand'n fell asleep on the flight between San Jose and Salt Lake, and woke up as we were descending. When Dee told him we were about to land, he sat straight up, grabbed his Fruit-by-the-Foot(remember that he packed 4, one for each flight?) and gobbled it down in 20 seconds flat. Maybe he has a little OCD???
When we landed in Cedar, the whole family was there to greet us in their Narcoleptic Boy shirts. Thank you to Sherry and Tammy and Mandi for watching the kids. Thank you to Aunt Jennifer for trying to send him some gifts while he was at the Dr (too bad amazon couldn't get it together). Thank you to everyone who chipped in to help us get there. Thank you to the Standford Sleep Dr's, especially Mali for all the help she has given us over the last 6 months. Thank you to everyone who has prayed for us, or shared our blog or liked our facebook group, or even just read any of this. We love and appreciate all of you, and even though we can't personally thank each of you individually, know that you are all appreciated.
