Day 1, Travel Day, Tallahassee, Florida - Washington, DC...


Finish line at The Children's Inn, Bethesda, MD (in preparation for Day 2!)

Our travel day was filled with many disappointments, but we made it to our destination at 5:00 pm on Sunday. It's now Monday, Jacob has finished his morning labs and the 3 hour brain and spine MRI both with and without contrast. The MRI went well. That's the short version for those of you who just want to know that we made it safe and all is well. You can hang up now. For anyone else who wants to read my whining about a not-so-fun travel day, by all means, please continue reading...

I've been stressing to the family for the last few weeks to stay healthy, get rest, wash hands, take vitamins and stay away from sick people. The Children's Inn doesn't want sick kids here given that there are so many little ones in treatment. Not to mention Jacob needs to be healthy for his surgery as well. I thought I was in the clear until Gavin started sneezing Friday, with a few more cold symptoms appearing on Saturday. Sure enough, Saturday night (well, actually it was Sunday morning at 4:00 am) Gavin woke up complaining about his nose. He felt a little warm but I couldn't tell if it was fever or just him being cozy in bed with us. After a good nose cleaning out (Thank you, TD, for teaching our not-even-three-year-old how to blow his nose!!), Gavin curled up with TD and both of them went back to sleep. I wasn't as lucky. My mind was racing. I called CHP's Urgent Care to see what time they opened and knew I was out of luck when they said 9:00 am. We had to be at the airport around 9:30 am. TD and I whispered about Gavin staying in Tally and I wondered if I should call and beg our nurse to prescribe a Z pack just in case G got worse. As my excessive worrying continued, I noticed Gavin was sleeping peacefully, breathing well and didn't feel hot at all. "Ok," I thought, "I can deal with a runny nose with CLEAR drainage." Needless to say I never went back to sleep.

TD, Jacob, Brie, Gavin and I made it to the airport around 9:30. This would be the last thing that went according to schedule for a few hours. I checked in our big bag. There was a lot of thought that went into whether or not to ship a bag through. I decided it would be best for the way home since Jacob wouldn't be able to help me carry anything. We visited for a little while and got into the security line around 10:00. TD and Brie waited to see if there was a problem with any of our stuff going through, but when I realized how long it was going to take, I waved them to go on home. We had around 10 tubs full of crap. Shoes, belts, phones, iPods, coats, laptop, snacks, Gavin's activity bag, my backpack and Jacob's backpack. Like pack mules! Oh, and the stroller has to go through the x ray machine as well. We had several things that they had to take out and check, like actually TEST! Gavin's milk and juice boxes, and so much more. I think six people looked at Gavin's ham sandwich to see if it was a sandwich. A bomb that looks like a sammy would be quite clever (and terrible, just saying). Anyway, all of our stuff checked out safe except Gavin's buddy fruit, a little Capri Sun-like package of mushed fruit, strawberry if you're curious. The scan showed that it had a material on it that could be used in an explosive. Really? Ok, so I thought they would throw it away. Instead they gave it back to me and gave me a full body pat down. I'm not talking about a pat, pat, all done. I got felt from head to toe. I had to lift up my shirt to my ribs exposing my waist and was patted down under my jeans at my ankles. I was so impressed that they use the back of their hands to feel your breasts, bottom and crotch area instead of using their palms. It completely alleviated the humiliation of being patted down for a fruit pouch. I should thank them personally... making a note now. Ok, enough sarcasm. She did offer to take me to another room. I guess she didn't see my plethora of stuff and my baby sitting in his stroller with a gazillion people walking constantly between us. Maybe she thought that if I was going to give my baby a fruit pouch full of bomb juice that I must not care that much anyways... AHHHHHH! Jacob stayed right there with Gavin and watched as his mom was treated like a criminal. I understand they need to do this to be safe. I want to feel safe on our flights. I know I shouldn't complain, but the logic is off. If I am willing to take explosives on the plane with my kids, then why only check me? If I am that horrible of a person why would I be the only one who could be a risk? There were several other old ladies getting lucky with the FSA agent too. So my shoes, belt and scarf were sent through the scanner again, we packed all our stuff back up and went and sat at our gate. The US Airways attendant announced shortly after we sat down that the flight was overbooked and they were looking for volunteers to give up their seats. Great. As if all of the preceeding wasn't enough, our flight showed up an hour late. I was wondering how we would catch our next flight when TD called and said our grocery order wouldn't be delivered Sunday because their delivery company's system had crashed. We were looking at having no time in Charlotte to eat because we had to get to our flight to DC and then no time in DC to catch our shuttle to the Children's Inn, and then no car at the CI and no restaurants on the NIH campus. The cafeteria isn't open on weekends and closes at two anyway. When I got on the plane to NC, I realized that my ice pack for Gavin's milk had burst and leaked all over our bag and me... Woohooo! Just another cheer-inspiring moment.

We landed in NC and the attendant at the end of the tunnel was announcing that if you are on the DC flight to hustle to C12, that they were holding our flight. I think Jacob is incapable of hustling. We were the last ones to get to the gate and I honestly think they had closed the door and had given up on us. I was about 30 yards in front of Jacob and when the person at the desk saw me breathing like I had just ran a 5K - she said Grimes! I said "YES!" and she got on the phone for them to open the doors. She was kind enough to wait on Mr. Turtle. The "walk" from concourse E to C is a freaking hike and poor Jacob complained about leg pain for the next hour. Gavin and Jacob were hungry, tired, and had to potty, but we boarded the plane, fake smiles in full grin, and made it to DC at 2:50. Everyone was miserable but glad to be on solid ground for a few weeks. Have I said yet how much I dislike flying? Gavin didn't remember flying before yesterday and he was really scared when we took off in Tallahassee. He had his very own window seat but was hugged up to my arm, head down, eyes closed. After we were off the ground he looked out the window and was amazed. He didn't mind landing in NC and loved seeing all the cars and such. He did cry for a long period of time when we came into DC. His ears wouldn't pop and he cried over and over, "I can't hear myself!"

Anyway. Back to arriving in DC...

When I spoke to the CI receptionist requesting a car seat for G that morning, she told me that the shuttle was leaving DCA at 3:00. I swore I read 3:30, but I have been known to remember things wrong (don't let my husband know!) so I believed her. At that point I thought we were going to miss our shuttle with the car seat for Gavin. It's a 45 minute drive to the CI from the airport on freeways. Did I mention yet our bag didn't make it to DC with us? Oh, forgot to mention that... Lovely. As I was setting up delivery for our bag, I called NIH transportation to check on times. I was relieved that we hadn't missed our ride and it came right at 3:30. The car seat was not installed and, once we got it strapped in right, the five point system wasn't working. Twenty minutes later (and still no tears yet, a feat that I'm very proud of!) Gavin still was not safely strapped in, but there wasn't anything else to do but be on our way. This was almost my breaking point. I was terrified the entire ride. There was ice and snow on the ground, the eight-lane freeway full of other cars goes over bridges and through rock mountians and on very curvy roads at what feels like 100 mph. I thought the stress was over when I saw the NIH security check point until I realized our badges were expired. Usually the guards will come on the bus and check IDs and have us sign papers. This time it was required for us to get off the bus and go through a metal detector and then go to the booth to provide identification and get a temp badge. There were about 10 others on the bus. I didn't want to take Gavin into the cold so I asked Jacob to stay with him and he could go when I got back on the bus. The bus driver said Gavin could stay with him and I replied, "That's ok, my son will stay." I guess my anwser wasn't good enough because as I was waiting in line, freezing, the bus driver sent Jacob off the bus to get cleared to enter. I understand he was trying to save time, but I was still angry.

Checking in at the CI was pleasent as always. Everyone here is so nice. I will say, again, I was disappointed that we were placed in a room in the wing that I specifically requested (when we made our reservations) NOT to be placed in. I know now that it was for the best and one of those things I should be thankful for. The CI is having renovations done in the main lobby and around the big playroom. If we had been placed where I wanted, we most likely would have had to listen to work being done during the days, during nap. Jacob took Gavin to the big playroom today and said there were cans of spray paint and other construstion things laying around. It is best if we don't pass it constantly and tempt Gavin. After unloading our stuff, our carry-ons anyways, we bundled up and went outside. It was supposed to rain today and I wanted the boys to get in the snow before it turned to muck. It was an awesome 20 minutes. I hope we will get another chance to play outside before we leave when the boys are feeling better. We threw snow and stomped and ran. It was freezing our hands and our noses turned red, so we went inside to warm up. Thank God some wonderful people came and brought dinner for the families last night. We ate a nice meal with salad, lasagna, fruit and Jacob's favorite, macaroni and cheese. I was told that our bag would come by nine. It didn't. We had a change of clothes for today and that was it. I gave Gavin a bath and laid down with him. It was hard, but I stayed up waiting for our luggage. We needed our stuff. I called again at 11:00 pm. She assured me it had been picked up and was out for delivery by their delivery company. Jacob had a good everning. He Skyped with his dad and family, talked to some of his friends and watched football in one of the common areas. I went to sleep happy the Giants had pulled off the W and hoped Monday was going to be a bit smoother.

At 4 am Gavin woke up crying again about his nose and aksing for water. He settled back in and I went to see if our bag had come. It had a nose syringe in it. And Vicks. Nope. No bag. I called again. They weren't open until 6 am. Gavin and I went back to sleep and it seemed like minutes later my alarm was going off. Jacob's first appt was at 8 am. We bundled up and were so excited to go to the coffee shop for bread, coffee and hot chocolate. Sad face. Closed due to the weather until 11:00. I was worried today was going to be another day going straight uphill. We went to peds oncology for Jacob's port access and blood draw. We waited a good 45 minutes and Jacob was stressing that his lidocaine I applied at 7 am had worn off. While waiting, Gavin gagged himself with a cereal bar and threw up on the floor. So I was in the company of Nervous Nelly and Pukie Paul. Haha, bad joke. Jacob's access went easy, blood draw quick, and we got to MRI early. They took Jacob back at 10:00 and I talked with a wonderful mom from Tennessee who had a 19 year old daughter with a very advanced case of NF1. I hope to see her again here at the Inn. While Jacob was in his imaging, Gavin and I got drinks and watched some tv. I got a call to rearrange Jacob's schedule for tomorrow and Thursday, which was another pain, but worked out. I called and fussed at US Airways again about my bag. Each time I called the attendant was very nice and apologetic. She called the delivery company and then called me back. I have been told it will come "in the next few hours" since 6:00 yesterday. US Airways, reconsider your contract. Your outsourced delivery service sucks! They said there was supposed to be an ice storm last night and there wasn't. Last time I called the delivery guy told the airline that due to demonstrations in DC he couldn't get out of the city. Um hm, Whatever.

So Jacob's MRI went well. We went back to peds and had his port flushed, heprin cycled and deaccessed. We ate pizza and fruit in the caferteria. Gavin wanted to play in the snow again and we did a bit on our walk back down the hill, but our groceries that Gina had ordered for us were finally here and I needed to put them away. Thank you Gramma Gina!!

It is now 3:00. Jacob's next appointment isn't until 5:00, a delayed, no contrast MRI of his brain. Our groceries have come and the all-so-common "what's for dinner" question has been anwsered. Gavin is sleeping peacefully, Jacob is playing XBox and I am waiting on our luggage, sitting quietly, reflecting on the last two days and being thankful that we are all safe and surviving the journey. One and a half days down....

As I was about to send this post to TD to proof, the delivery guy had the audacity to call me and ask me to walk to the gate to get my bag. Evidently, if he was going to come through the check point, they were going to have to check every one of his bags. Of course, desperate to get our bag, I ran and met him and I went through security again, but what a lazy *#@#. He better be glad his van wasn't marked with anything or I would be calling somebody!! I am so happy to have our luggage. I can't wait to wash my hair!! :)