The morning came real fast since we went to bed near 2:00 am. We reached the admissions office about 8:30 am and without eating breakfast. They have it set up interesting where we are admitted as inpatient so we have a hospital room at the Clinical Center but are allowed out on pass to the Children’s Inn when we are done for the day. This allows us to order meals and have a place for the doctors to talk with us. We are sharing a room with another child who is also attending the Undiagnosed Diseases Program.
We started the day off pretty quickly. As soon as we got into the room a genetic counselor, a neonatologist and a physcian's assistant followed. They were all so wonderful and ran through some details about the process. The genetic counselor commented on how well put together Lorna’s records were. I did it chronologically in access and had links to pdf files of the reports if I had them. Then it was on to prenatal history, the history of Lorna’s birth and early infancy. That was from about 9:30 am and 12:00. At 12:00 Lorna saw an audiologist and did an audiogram and hearing test. They said she has some hearing loss in the high frequency sound; this is new since she had the test done 3 years ago. It has been something that we have checked because of her ear shape doctor immediately think of potential hearing issues. This will be something that we will have to keep an eye on. They suggested that we may look into doing an ABR, which has never been done before. At 1:00 pm she saw a dentist he didn’t see anything indicative that would help with diagnosis, but we were able to do a panorama x-ray of her teeth which show a lot of delays and some impacted teeth. She was so great with this process of examining her teeth; they also had to stretch her lips out for several photos. By the end of this it was 2:00 pm, so we took a well needed break. Lorna and I went to the cafeteria and had a bit to eat since we didn’t have a Lunch. We went back to the room and we were able to put in a movie for her and I got to relax. The 3 of them came back and did a head to toe exam of Lorna, they are very intrigued by her finger nails they are half white and half red. If I wouldn’t have forgotten my camera I would have been able to add a photo. I will add one at the end when I get all the reports and summaries of our time here.
The day was done at 4:00 and we were able to come back to the Inn and do some playing in the play area and reading books and of course eat supper. The Children’s Inn is amazing; Lorna and I haven’t had to endure staying in this type of place. It has been a wonderful experience so far. They have volunteers here helping at the desk and managers staying the whole night. They help everyone in so many ways and some families have to stay here for a very long time. It is nice to know that there are so many caring people.
Tuesday, March 31, 2009
The Travel to NIH
We didn’t have a great travel experience heading to the NIH. To make a long story short, we were suppose to arrive at the Children’s INN on the NIH campus at 5:00 p.m. however we ended up arriving at 1:00 a.m. We had a canceled flight and snow in Chicago earlier in the day that delayed flights all day.
So when we final arrived at the airport in Washington it was late, they had arranged a taxi driver to pick us up. Before we left they had given me the number so that I could contact him if there were problems. So I contacted him earlier in the day to let him know we weren’t going to be on the same flight. He was waiting for us at the airport and was very nice man. He was great with Lorna and spoke to her at her level. He does his taxi by appointment and picks up often for the NIH. So he was very familiar with the process and shared with us what we needed to do. It was helpful to be aware of needing to stop at the gate and get a security check and NIH badge; he was very detail about the process.
So we arrived at 1:00 am and needed to fill out a quick paper and get a photo taken, our tour of the Inn would have to wait until the next day. So we ended up getting into bed just before 2:00 am and needed to be in admissions between 7:00 and 9:00 am.
So when we final arrived at the airport in Washington it was late, they had arranged a taxi driver to pick us up. Before we left they had given me the number so that I could contact him if there were problems. So I contacted him earlier in the day to let him know we weren’t going to be on the same flight. He was waiting for us at the airport and was very nice man. He was great with Lorna and spoke to her at her level. He does his taxi by appointment and picks up often for the NIH. So he was very familiar with the process and shared with us what we needed to do. It was helpful to be aware of needing to stop at the gate and get a security check and NIH badge; he was very detail about the process.
So we arrived at 1:00 am and needed to fill out a quick paper and get a photo taken, our tour of the Inn would have to wait until the next day. So we ended up getting into bed just before 2:00 am and needed to be in admissions between 7:00 and 9:00 am.
Thursday, March 26, 2009
What is the Undiagnosed Diseases Program?
The Undiagnosed Diseases Program that Lorna and I will be attending next week, is a new program that started in May of 2008. The most appealing thing to me is have multiple specialist sitting around the table discussing each piece of the patients situation. This doesn't happen in the health care system to often.
To understand the program a little more there are a few news articles that I enjoyed reading. The first one is titled "What's Wrong With Summer Stiers" and was in the New York Times. Another was "Meet Dr. House's caring alter ego" this was posted in NewScientist. The last piece that I like was on CNNhealth.com and labeled "Don't call him Dr. House".
Have fun reading. Don't forget to check in during the coming week.
To understand the program a little more there are a few news articles that I enjoyed reading. The first one is titled "What's Wrong With Summer Stiers" and was in the New York Times. Another was "Meet Dr. House's caring alter ego" this was posted in NewScientist. The last piece that I like was on CNNhealth.com and labeled "Don't call him Dr. House".
Have fun reading. Don't forget to check in during the coming week.
Tuesday, March 17, 2009
The begining
I started this blog to keep people updated on our trip to the Undiagnosed Diseases Program at the National Institute of Health. However I plan on using this blog to update and post about our whole family as we enjoy our life on Lorna Lane.
I will use this first blog post to explain my blog title, Life on Lorna Lane. Nine years ago we started our life on Lorna Lane. My dad had purchased some land north of town a few years earlier. It took a few years for him to decide what he was going to do with it, at that time Lorna was 3 and I was pregnant for Jadon. After many discussions he decided to give us a portion of the land, however it would be the back portion that had no road access. So we needed to build a road, and needed to pick a name for it. Lorna was the first and only child and grandchild at the time, so we named it after her. The doctors get a kick out of that every time they verify our address.
Fast-forward four years, Jadon was 3 and Lorna was 7. We were helping Lorna with her address for several weeks and Jadon turns to us and says “where’s my road mom, I want a road too”. What are we to do then, poor guy, how must he feel to not have a road named after him like his sister. We needed to come up with something. So we decided that we would build a path through the wooded portion of our land and we would call it Jadon’s Way. This fit very well because it was always his way. He was always right about everything; such as with his colors he would call something blue when it was red and was determined that is was blue when told otherwise. He is still like that by the way.
After that experience, when Cloey was born and very young we thought we would think ahead and come up with something to name after her. We have a camp area on the land and we spend a lot of time there. So we thought we would call it Camp Cloey. Currently that plan is backfiring on us. She gets upset every time we call it Camp Cloey. For some reason she doesn’t like it when she hears her name used for other things or even people. So she is now determined to find another name for the camp area. I’m hoping that she will get over that because we would like to put a sign up soon.
I will use this first blog post to explain my blog title, Life on Lorna Lane. Nine years ago we started our life on Lorna Lane. My dad had purchased some land north of town a few years earlier. It took a few years for him to decide what he was going to do with it, at that time Lorna was 3 and I was pregnant for Jadon. After many discussions he decided to give us a portion of the land, however it would be the back portion that had no road access. So we needed to build a road, and needed to pick a name for it. Lorna was the first and only child and grandchild at the time, so we named it after her. The doctors get a kick out of that every time they verify our address.
Fast-forward four years, Jadon was 3 and Lorna was 7. We were helping Lorna with her address for several weeks and Jadon turns to us and says “where’s my road mom, I want a road too”. What are we to do then, poor guy, how must he feel to not have a road named after him like his sister. We needed to come up with something. So we decided that we would build a path through the wooded portion of our land and we would call it Jadon’s Way. This fit very well because it was always his way. He was always right about everything; such as with his colors he would call something blue when it was red and was determined that is was blue when told otherwise. He is still like that by the way.
After that experience, when Cloey was born and very young we thought we would think ahead and come up with something to name after her. We have a camp area on the land and we spend a lot of time there. So we thought we would call it Camp Cloey. Currently that plan is backfiring on us. She gets upset every time we call it Camp Cloey. For some reason she doesn’t like it when she hears her name used for other things or even people. So she is now determined to find another name for the camp area. I’m hoping that she will get over that because we would like to put a sign up soon.
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