We are on day 5 of the program. We only have a few things to do today and are wrapping up. We had a 8:30 am wrap up meeting with Dr. Gahl, Gretchen, Kathrine and Orna. I know this is the first time I used their names. Gretchen, Kathrine and Orna were the main team members on Lorna’s case and we had seen them many times throughout the week. There is nothing really new to share with you about the wrap up meeting. We will wait for results to come in, some will take a month and others will take much longer. Since this is a research program there it is still likely that we won’t get a diagnosis, but I can at least say that we have done what we can to figure out what is the cause of all her symptoms. It was also very beneficial to see some of the top specialists in each field. They will not forget about Lorna’s situation and will continue to think about possibilities for her.
At 10:00 am we had a photo section, they took pictures of Lorna’s face, ears, hands, feet, and chest (she has pectus excavatum). We also had some shots of me and her.
At 10:30 am it was my turn to get blood work done. That is part of the SNP microarray testing; they need blood from John and me. The SNP microarray will look at Lorna’s DNA and see if there are changes in certain areas, everyone has differences in their DNA. If they find differences they will look at mine and Johns to see if we have the same differences, if we do then it doesn’t mean anything. If we don’t then they will have to look at that area closer.
We were done with everything at about 12:30 pm and went back to the Children’s Inn to eat Lunch. We also started packing to prepare for leaving the next day.
We went on a field trip with the Children’s Inn at 3:30 pm. Washington DC is having a cherry blossom festival this week end. So we all went to see the cherry blossoms and were able to stop at the Lincoln memorial, Veteran memorial and Korean memorial. We also saw the white house as we drove by, traffic was slow so we were able to see it pretty well from afar. We were driving on Constitution Blvd. We didn’t get back until 7:30 pm.
At 10:00 am we had a photo section, they took pictures of Lorna’s face, ears, hands, feet, and chest (she has pectus excavatum). We also had some shots of me and her.
At 10:30 am it was my turn to get blood work done. That is part of the SNP microarray testing; they need blood from John and me. The SNP microarray will look at Lorna’s DNA and see if there are changes in certain areas, everyone has differences in their DNA. If they find differences they will look at mine and Johns to see if we have the same differences, if we do then it doesn’t mean anything. If we don’t then they will have to look at that area closer.
We were done with everything at about 12:30 pm and went back to the Children’s Inn to eat Lunch. We also started packing to prepare for leaving the next day.
We went on a field trip with the Children’s Inn at 3:30 pm. Washington DC is having a cherry blossom festival this week end. So we all went to see the cherry blossoms and were able to stop at the Lincoln memorial, Veteran memorial and Korean memorial. We also saw the white house as we drove by, traffic was slow so we were able to see it pretty well from afar. We were driving on Constitution Blvd. We didn’t get back until 7:30 pm.
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