I am excited to start talking about our trip to NIH and meeting Dr. Rider. We were looking forward to it on a few different levels. For one, the boys truly did look forward to making their mark on helping with Research and of course they kept talking about Washington D.C. nonstop. Alexander especially studied George Washington all of last week and even ended his week in painting three pictures of George Washington, one of him in the Army, one as the President and one with his so beloved dogs. When we stopped for the boys haircuts on our way out of town, Alexander actually requested to have a George Washington Haircut. We were lucky they were not carrying those wigs in the store - haha.
Our trip started on Saturday the 13th with us driving to Denver and spending the night at the Hyatt Place Airport Hotel again. This is really such a wonderful place that we are becoming great customers of them :)
On Sunday morning we left for our non-stop flight on Frontier from DEN to DCA. The problem we faced with Frontier was the fact that it was oversold and we did not get the reserved seats we were promised but instead were handed 4 seats spread throughout the airplane. In the end we worked it out having three seats in row 22 and one seat in row 5. I was going to get closer in detail about what my thoughts about Frontier and Southwest were but I think I put it in just a few sentences. They are both delivering a product from getting you from one point to the next and if you are lucky you can get straight from point A to B but sometimes they make you stop at X Y Z first. Yes, they are cheaper as some of the bigger Airline competitors but what I found out for myself was the fact that it feels exactly the same way as it does when you shop at a Walmart or when you eat Fast Food. You do get a product but it's the quality that is missing. Everything felt cheaper and was cheaper, but you might get it with a smile. After all, Walmart has it's Greeters, right? So, I am removing the remark I made about myself about being a possible snob ... I am NOT but I do appreciate a little bit of quality. So yes I prefer shopping at Target over Walmart and I rather eat at Chipotle then McDonald's. I am not talking or trying to compare First Class with Economy ... not at all!
NIH was great and we loved Dr. Rider. She was very personable just like all the Doctors we have met that work in this field. I am still so amazed that all the Doctors we have met and who are treating Connor are women! Dr. Lauren Pachman, Dr. Megan Curran, Dr. Jennifer Soep and now Dr. Lisa Rider. We love and admire each of them!
Dr. Rider's nurse, Tina, was also an absolute Angel! I did not count them but there could have been over 40 vials of blood that she took of the boys in the two days we were there and the boys never once shrugged. Connor was able to give his blood through his port and Alexander had a perfect vein on his right arm that Tina was able to access on both days. There was also a Physical Exam for both boys and lots of paperwork for me to fill out. On our last day there, Tuesday at eleven o'clock, we met the whole team during their rounds. This is where we got to ask question to everyone and also meet Dr. Miller.
The interesting part for us was to hear that there very well is some genetic link happening. I asked about the possibility of twins having the same disease and I was told that in the whole Myositis Study there are about 40 to 50 known siblings with both of them having Myositis.
They are studying several environmental views of what could be a trigger or cause for flareup but there was no answer .... yet.
Now one of my concerns was what should be our stand on the Flu Vaccine that is out right now and the likely hood of Connor having a Genetic Disposition that reacted to his H1N1 Vaccine last year. You all know he showed his first symptom just 4 days after the H1N1 Flu Shot and what a surprise to find out that one of the Doctors on the team was indeed doing a research on exactly that :) I so loved getting a precious responds from Dr. Rider that in our case we should skip the vaccine for our boys because it truly is not clear if that was a factor or not. She put it in the most beautiful way ... you are damned if you do, and damned if you don't. So we are happily following Dr. Riders suggestion on not having the boys vaccinated. Now remember this is only for our situation! Each child has a different genetic makeup and what can cause a flare or outbreak for one can very well not touch another.
Another gift we received was Dr. Riders thoughts and ideas about Connor's treatment plans and I have to say what she told us made so much sense and we are grateful that she was so open to us. Connor is doing amazing but of course we are now entering the critical point of how much and how soon to cut back on any of the medication he is on. Most of you know how damaging it can be if you cut back to fast and your child ends up with a flare that can set everything back even worse then it was initially.
Our flight home on the 16th was pretty uneventful and the boys were so tired that they could not recall anything of our trip home. We landed in Denver at 8 PM and after heading to the Hotel for our car we were on the road for home by about 9 PM. Our drive home takes about 2 1/2 hours and poor Ron had to do this drive after a long day and on icy roads. We were lucky, I guess, because we were told that the day prior I-25 was closed due to a 35 car pileup and I-70 was in fact still closed due to heavy snow fall.
We are so glad we went to NIH and we are so happy to be home again!
Thank You to all of you for the precious notes!
Hugs
R A C A
No comments:
Post a Comment