Tuesday, December 8, 2009

1st Trip to NIH (Day 1 and 2)

Jacob's 1st trip to National Institute of Health

Day 1 and 2

Sunday, November 29, 2009

Up at 6:20 am....TD, Jacob, Brie, Gavin and I were off to the Tallahassee Airport, arriving at 8:05 am.

Mom and Dad met us at the airport to wish us well and watch us take off.

The Delta representatives were very nice. They helped me check in our baggage and get our boarding passes. I was very worried about getting on the plane with my precious boys and felt sick to my stomach. (Even though I have flown many times before) I was sad about leaving the other half of my family for a week, but I kept reminding myself it was for a great reason - the beginning of a new journey - a new phase in our war against NF2.

Getting through security was a pain. They checked Gavin's baby food and my water bottle, had to look through my backpack and Gavin's diaper bag and they made us take off our shoes. They don't even bother to let you go through with your shoes on anymore, they have you place them through the X-ray machine. The security officers had to look at all of our electronics and Jacob and I had to take off our jackets. I also had to fold up the stroller for x-ray. After all that we made it to the gate by 9:00 am. We boarded 1st at 9:10 am. Jacob and I were given the very 1st seats on at very small jet and we learned very quickly that our carryon bags were not going to fit under or over our seats. I thought that they could just sit at our feet, but I was wrong and almost lost it when confronted by the stewardess. I was very frustrated because Jacob was holding Gavin while I was trying to figure out where to put our things and Gavin was screaming. After the help of a very patient flight attendant and some rearranging of our stuff, our bags found places on the plane and we were on our way to Atlanta.

Gavin and Jacob were awesome. Jacob was nervous, but as soon as the plane took off and we were in the air Jacob was fine and even told me he thought take off was pretty cool. Gavin sat like a big boy in my lap, chewed on his toys, nursed and fell asleep. I couldn't of asked for better behaved boys. After being in the air for only 30 mins we landed in Atlanta....smooth flight and smooth landing. There was even a nice man (and his wife) who helped me by carrying G's stroller up the stairs into the airport. (Yes, that is how small our 1st plane was...it didn't even have a walk through.)

Atlanta airport was packed. We made our way from the D terminal to the A terminal. Jacob and G both liked riding the underground train. Jacob ate burnt pizza and I had bad coffee, only later to find that there was a Starbucks right by our next gate. Our walked from the train to the gate seemed long because we had so much crap, but we made it and found a nice spot to sit in front of the window. I fed Gavin his cereal and pears and let him get down, stretch his little legs and crawl around. Before I could even relax it was time to get back on a plane and be on our way to Ronald Regan Airport in Washington, DC.

The plane to DC was huge and completely full. We had more room to put our stuff, but were still squeezed in like sardines. The take off was much easier to swallow this time and the flight went by pretty fast. Gavin wasn't happy at 1st being restricted again, but gave in and repeated his same routine from the 1st flight. Jacob and I listened to music TD downloaded for us the night before and G slept. My arm felt like it would fall off from holding G by the time we were getting ready to land in DC and G woke up about 30 mins before we landed and graced us with a dirty stinky diaper. I figured if that was the worse thing I had to complain about regarding our flights I was very lucky.

Another smooth flight and landing was behind us. We had arrived at Ronald Regan National Airport in one piece. I hurried to the bathroom to change the dirty doody and then rushed to the baggage claim. I was determined to make the 3:00 pm shuttle. I was starving and pushing through with a horrible headache. The pressure from flying is rough on my head and ears. I was so relieved that we got everything done and were able to make the early shuttle.

The ride on the shuttle to NIH in Bethesda, MD was very nice after G stopped crying about being in his car seat again. Jacob and I tore into the bag of goodies Nana and Papa had given him. We ate all of the cheese, crackers, and summer sausage...also the brownie, and m & ms, only noticing the no food or drink sign after we were done. Looking out the window at the slate rocks on the edge of the rivers and the bare trees, the view looked just like winter should look. The houses were huge and beautiful. It was getting late in the afternoon and was very gloomy outside. I was ready for dinner, a hot shower and bed.

The Children's Inn was awesome! Our room was very nice with lots of space. It had two double beds, a desk, dressers, a Pack N Play for Gavin, TV and Wifi. There was even a sitting chair with an ottoman in front of a huge window. We had plenty of room for Gavin to play and a place to put the stroller and all of our stuff.

That night a church came and served dinner for all the families at the Inn. We ate hot dogs, hamburgers, salad and fruit. Jacob quickly made a friend, David, from Georgia and spent most of the evening playing games in the Teen Room with him. Gavin and I explored the Inn, stopping to play in the common areas built just for little ones. I did my nightly prep, getting Gavin's bag ready for the next day, lunch, diapers, wipes, toys, etc. I looked up all of Jacob's appointments, laid out our clothes, took baths, etc. I had to round Jacob up and make him come in at 11:00 pm - he was having so much fun, but our Monday was going to be busy.

Monday, November 30, 2009

I woke up at 3:45 am to feed Gavin and couldn't go back to sleep. I laid in bed, thinking, wondering how our first day at the huge National Institutes of Health would go. I woke Jacob up at 6:30 am and got Gavin and myself ready. We bundled up and decided we would walk up the hill to the Clinical Center instead of taking the shuttle. It was supposed to rain, but it was only 7:30 am and hard to tell how the weather would be for the day.

Our morning went very well. We didn't wait long for any of our appointments and everyone was very nice. From 7:30 am to 1:30 pm Jacob did the following: Admissions to NIH, Blood work, Outpatient work up, New Patient work up, Pre anesthesia, Audiogram and ABR testing. I also managed to squeeze in a visit to the Voucher office and we went to the Security Center to get our yearly badges. We did a lot of paper work and answering questions. Jacob was nervous about having blood taken and the many viles of blood they took from him, but the nurse was very good and didn't hurt him at all. As for his hearing appointments, they weren't anything he hasn't done before and Jacob even got to take a nap during the ABR testing. We learned during his hearing testing that he has had a slight drop in hearing on the right side, but at this point it isn't anything to be concerned about. (Jacob’s last normal Audiogram was in July of this year) Gavin was awesome during all of this - riding in his stroller, eating cheerios, walking around the chairs and couches, chewing on his toys and sitting in my lap. The NIH Clinical building is very large -the only thing I can compare it to is Florida State campus. It is very clean and decorated with what I consider to be modern art, but still warm and calming. It appears they put in a lot of thought to the decor. The architecture is also very modern and open. Everyone we came in contact with was polite, educated and appeared to know what they were doing. Our day of appointments went by very fast.

After having lunch in the cafeteria we went back to the Inn to regroup. Jacob and I decided we would take the Metro Subway into Washington, D.C as a trial run for later in the week. It was really cold and started to rain, but we went anyway. It didn't turn out to be a very pleasant trip. Even from the start. I was unable to find an elevator to take us down the 200 ft into the subway system. I had to fold up Gavin's very heavy stroller and hold it and Gavin down the very steep escalator. Trying to figure out how to buy tickets from a machine with a fussy baby was a task too. Once on the Metro I held Gavin until he fell asleep. The closer we got to D.C the more full the train became. We decided we would get off in Chinatown. While approaching the Chinatown stop the conductor came on over the intercom announcing a person had been hit by a train at the Chinatown station and to expect delays. When we exited the train people were running to see the accident, there were firefighters, and police officers all around. We held onto each other and made our way up to ground level. The weather was terrible. It was raining and cold. Jacob and I put our hoodies up and I covered Gavin with his blanket and put his skully on. Jacob had also brought an umbrella that I held over Gavin while pushing the stroller. Gavin decided he was miserable and who could blame him. I ended up carrying him most of the rest of the way so he wouldn’t cry. We tried to walk around, but the weather was too bad. Jacob was very excited to see the busy city, but agreed that it wasn’t good for us to be out in the cold rain. We ended up going into the Smithsonian to warm up and get out of the rain. Too bad it was the Museum of Art and didn't have anything super cool that Jacob wanted to see, other than an amazing covered courtyard. We walked back to the train. The admissions machine ate one of our tickets and I had to jump over the gate with the stroller and hand Gavin to Jacob after he went through.....the station was packed because of rush hour. It was a nightmare. People were pushing and we waited through 3 trains. Finally we made it back to the Inn and Jacob had an interesting story to tell about his 1st time on a subway in the big city.

We ordered take-out and it wasn't very good. I was excited that our groceries Gina had ordered for us would arrive soon (between 7 and 9). We got our groceries and repeated our nightly routine.

I was exhausted but very pleased with Jacob, Gavin and myself. We had survived our 1st day at NIH, the nasty weather and the DC Metro subway!

I was ready for some sleep and whatever Tuesday would bring.

(Will post Day 3 - 6 soon)

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