Monthly Archives: August 2016

David getting his pneumoccal levels check

David Noah got his pneumococcal levels checked today at UCLA. He got the vaccine six weeks ago, and then they check his levels to see if he mounted a response. Normally he mounts a response, even if it isn’t a … Continue reading

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See how David Noah’s feet are turned out?

I can’t believe Noah resting and doing this work this way… This must be part of the hyper mobility they talked about at the NIH–

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Good things on the horizon :)

Lorna, I can’t tell you how much I enjoyed our conversation today…it was really inspiring 🙂 As if the universe was acting on cue, Noah’s pediatrician sent me the packet she prepared for the genetic doctor at ucla just a … Continue reading

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WAS gene — was that in the exome test?

Was the WAS gene also covered in the exome testing we did? Is there a strange mutation on that gene? Noah and I had strange results to that test as well– That’s why I thought of the monocyte study that … Continue reading

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David Noah’s ALPS results: related to complement deficiency (?)

This is David Noah’s results from the ALPS study, taken back in 2010–most of the equations with C3 in it are lower than the ‘reference range’ for the study– The diagnosis was not consistent with ALPS, but they didn’t write … Continue reading

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Article about Complement stuff

I’m trying to read this article about Complement stuff…I got about one page read and my brain started to freeze, kind of like an ice cream freeze but it’s a science freeze overload instead… But then a light bulb went … Continue reading

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My C2 mutation: 2bp deletion

I guess the reason I’m not entirely convinced this is the problem with our immune system, is because we’ve had a lot of complement studies that have been normal, but my new friend I met at Cedars said I definitely … Continue reading

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Since meeting in the elevator

There’s not been one fucking day I haven’t thought of you. At first you were just the man in the elevator. The man I was going to find again one day by knocking on every door on the 11th floor, … Continue reading

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Article regarding monocytes

Thank you very much for taking the time to respond to my email. I know you must be very busy, and I appreciate your kindness very much. Yes, this is the article I was referring too–it is very exciting to … Continue reading

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Make it count

David Noah and I were at the ribbon cutting ceremony this afternoon for his new school building today, and right after they cut the ribbon they started to play ‘Celebration’ over the loud speaker. Not surprising perhaps, but important because … Continue reading

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