I will keep this quick and just update on today's visit to geneticist. I took Brooke, Chan and myself. Doc does feel we all have signs of hyper-mobile ehlers danlos syndrome. But she also feels like we are not typical cases. She sees the various traits throughout our family. She does not feel there is any need to test for any other form of eds. I agree with her on this. She does feel that there are good reasons to take a broader look at other genetic issues within our family. Aidan and myself are her main reasons for this. She suggested ordering a whole exome sequencing test. This test would take a "bird's eye view" of our genetic make up. The doc said she does not recommend this test very often. She warned it may create more questions. But she feels it is worth that risk. She thinks it may help us understand how to proceed. On our end it is simple. They need blood work for Aidan, Tim and myself. The blood test will be anaylzed by a lab and a report will be made. It can take up to 15 weeks for results. Doc and genetics counselor both strongly cautioned that we may learn things that simply can't be answered by science today. I felt like I needed to ask if alien dna may be found, and how this will be covered by insurance?
In all seriousness though....I am kind of confused what we are going to learn and how it will help. Is this test going to help us help Aidan and me? Or will it just muddy waters? I know knowledge is power...but if we do not have the knowledge to decipher the info how is that powerful? Yes it may some day be powerful....but can it help us now?
We are going to proceed even with many questions. First we need to find out if insurance will even cover. Some insurances do not. So we are praying ours feels this may help. We are also taking Aidan to a pain management doc and a Physiatrist for a consult. Thank you for prayers and support as we continue on. Many days I am drained and not sure which way is up. But hearing encouragement keeps me fighting and moving forward!
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