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Entries for July 2010

29
Moms are great!  Baylor University is trying to get as much information as possible to put together our family pedigree, going back to our grandparents, their siblings, children, grandchildren, etc.  Names, disease, disorders, anything that effected them that may be relevant to Noah and Alexis's disorder.  My mom is AWESOME!!  She is working on her side of the family for me as I am feeling a bit behind and, honestly, don't have a clue who's who on her side.  Thank you, Mom!!
We are going Mach Speed at this point (as the project manager at Baylor puts it).  They need to gather as much data as possible to make this project informative for all who view it/see it presented.  We are working to get everything ready for a conference in October called "TedMed".  We are praying for clarity in sequencing our family's genome, clarity for the scientists, doctors and whoever may be presenting the information.  This is an exciting journey and we can't wait to see what all comes of it!

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Retta Beery posted on July 29, 2010 Article Rating
27
I received Alexis's results today from her endoscopy.  Her esophagus looks good and they took 14 biopsies.  The results came back showing nothing of significance, there were eosinophil cells in her stomach, but not enough to be concerned about.  So, why the 4 year cough?  Why the night time breathing issues that have her taking breathing treatments multiple times a day just to ...

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Retta Beery posted on July 27, 2010
21
I took Alexis to Rady's children's hospital today for an endoscopy.  She has been struggling with a night time cough for the past 4+ years and last year it turned into something much more aggressive.  Over the past year+ her cough started up more in the afternoon, extending into the night.  In August of last year, her night time cough turned into a nightmare we were not expecting. &...

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Retta Beery posted on July 21, 2010 Article Rating
19
We went to Joe's office to have our blood drawn for the sequencing project.  I was worried they would have a hard time drawing Noah and Alexis's blood as they have smaller veins that tend to flatten out or shut down.  I was thrilled that they got Joe and Zach's blood on the first try!  Thank You, Lord!  I asked the phlebotomist to draw me next and have Noah and Alexis watch as ...

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Retta Beery posted on July 19, 2010 Article Rating
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