Saturday, November 16, 2013
1) Take the scenic highways. We took scenic highways on the way down, and some of the interstate highways on the way home. The scenic highways, particularly those in Pennsylvania were absolutely gorgeous. Travelling through the mountains is a must! However, I wouldn't advise this trip for winter, as the slopes on some of the roads were crazy steep, and very well could be treacherous for inexperienced drivers in the winter.
2) Stay outside of DC. Accomodation within DC is extremely expensive, and still not cheap on the outskirts. We stayed in Silver Springs one night, and in Bethesda for three nights. Both are on the metro (subway) line, which makes downtown DC easily accessible. We used Hotwire to book our hotels.
3) Take the Metro (Subway). Don't attempt driving to any of the tourist sites. Traffic is ridiculous. Take the metro instead! Buy a Metro card for $2.00, (the website says $5, but it changed to $2 in October) and put some money on it. If you don't buy a card, every time you use a paper pass it costs $1 more than the fare using the card. The subway system was easy to use, especially when using Google maps for directions. There are day passes available for the Metro, but unless you are travelling to many places in one day, I don't think it would be cheaper. They are $14.00/day. We did have someone pass us a couple day passes they were done with when we were putting money on our Metro card, and when we were done with them for the day, passed them on to someone else who was putting money on their card.
4) Smithsonian Museums. Go to a couple of the Smithsonian museums. Although accommodation is expensive as mentioned above, once you are there, being a tourist is inexpensive. All the Smithsonian museums/galleries/zoo are FREE admission.
5) Panera is better than Starbucks. If you are looking for a good coffee, a bite to eat, and free wifi, head to a Panera. It is a chain, that we do not have anywhere near us here in Canada. The food was delicious, and everyone goes to use their wifi. Nearly everyone had a laptop or tablet out while there. I had a bearclaw, which is apparently an American pastry that I was not aware of. I will buy one again!
We'll be heading back down next month for a couple days for a medical appointment, and I look forward to taking in a couple more Smithsonian museums, and having some delicious DC food. We've kept our Metro cards, so we're all set!
Wednesday, November 6, 2013
Note: i will add in some pictures later. My phone hasn't done a Google back up of the pictures I've taken yet.
Friday, November 8th would be our son Kyles second birthday. While being aggressively treated for Ornithine Transcarbamylase Deficiency (OTC Deficiency), a urea cycle disorder, with the hopes of having him obtaining a liver transplant, he acquired an E Coli infection at the hospital. The infection was not caught in time, and in doing the treatment for the OTC, dialysis was performed, which in turn spread the infection throughout the entire body.
Last year at this time, we had a follow up appointment at the
hospital. I'm hopeful that in my participating, new things will be learned that will help future generations.
This year, at this same time, I am at the National Institute of Health (NIH), in the United States, participating as a research subject in a study called MINI. It stands for Metabolism, Infection and Immunity in Inborn Errors of Metabolism. They had started the study with only urea cycle disorder patients, but have opened it up to all patients with inborn errors of metabolism.
Here is a link for more information on the study.
We arrived on campus on Monday night. We were booked in to stay at Safra Family Lodge while here. It is directly across the road from the clinic hospital. It acts as a Ronald McDonald House for families of adult patients. It is a very beautiful building, with 34 bedrooms, large sitting areas, a grand piano in one of them, and a large communal kitchen for the families to use. There is another building next door to this one for families of child patients.
On Tuesday morning, we had breakfast at the house. They have free muffins, bagels, toast, fruit, tea, coffee and hot chocolate available, as well as a section that is "house" food available to anyone that is donated by people who are staying and have made to much, or packaged food from residents who are leaving. Residents are able to stay for up to a month.
We then walked across the road to the clinic. There is transportation provided for those who may not be able to walk over.
Admission took about 1/2 hour, and then we went up to the room I was assigned to. Met with the coordinator, went through medical history, had a quick physical exam, had bloodwork done, met the primary doctor in charge of the study. Had a quick lunch. Had a liver ultrasound, which I've never had done before. Apparently my liver looks fine. Then went to the physio/rehab dept where they had me do a number of exercises and strength tests. They only recently added this into the study, as they were finding that most of the subjects were very physically weak. They said I was only the 5th person in the study to do this portion. I had to run up and down 4 stairs (they have railings you can hold onto if needed), and they times it. They had me walk and run 10 meters and timed. Timed the length of time it takes to get from lying down to standing without using any aids like tables or chairs to hold onto. Timed on length of time to do a sit up. Interestingly, they were surprised I could do one at all because other subjects couldn't. And then they had a number of exercises/positions that they timed how long I could hold the position for. I could do them all, but could feel the muscles starting to shake by the end. Also did some balance tests (not so great at those! Once my eyes were closed I started to tip!) They started to do a number of strength tests, but the one piece of equipment had the battery die, and I was too strong for the tech. We are going to redo these strength tests tomorrow to get more accurate readings.
I then left and went back to Safra house with my husband Mike and daughter Natasha. We ordered in some pizza, and then I walked back across the road around 8pm. Interestingly, as I was walking, there were 6 deer that pranced across the road in front of me! Apparently there are about 35 deer that live on the NIH campus.
Slept for the night, fasting after midnight in order to prep for a 24 hour chamber study that measures exact metabolic rate. Most people opt out of this part of the study, but I think that this is one of the more interesting facets, and am interested in finding out the results. The chamber is sealed, and is basically a bedroom, with TV, computer, treadmill, chair, bed, and washroom facilities. There is a small window facing outside, and a window that faces the nursing desk. Food comes in through a window. They open on one side, seal their side, and then you can open your side to take out the food or vice versa.
Tomorrow I do a body composition in a bodpod machine, and a dexa scan to measure bone density. I will finish the strength testing, have more bloodwork, get a hepatitis A shot, and meet with the geneticist for final results. It looks like I will come back in a couple of months for a bit more testing, and I will have my family doctor give me the second hep A shot. I'm interested to see what the final results will say.
For now, I have 21 more hours in this room. :)