Noah and I were talking tonight about how much his medical case has evolved over the years — thank y ou very much :)

Noah and I were talking about how much his case has evolved over the years, and as time passes we continue to learn more, which sheds new light in different directions.

Specially, we were talking about Dr. Bute’s report from seeing Noah in August 2018, then Noah’s lab results from Jan 2019 that clearly show an immune dysfunction — it might not be a glaring dramatic dysfunction, but it’s a dysfunction nevertheless.

And that lead us to talking about how when new information comes along, it naturally changes how we approach any medical case.

Noah had a very good point — the frustrating thing about his case, is that the best evidence is seen through observation (like the ER doctor who thought Noah looked totally healthy, but then Noah had a positive flu culture—I guarantee that ER doctor now understands both the complexity and the severity of Noah’s immune deficiency),

so the doctors who don’t see him as often don’t have as much information as the doctor who do.

I told Noah to never give up hope, there are great doctors who listen, doctors who will accept the facts as you present them of what happened to you at home, etc, and not dismiss them, to keep faith and one day the answer will get there 🙂

Thank you for being there for Noah for so many years. As his time with you comes closer and closer to a close, please know how grateful I am for the care and attention you’ve given him.


About hopeforanswers

Some kind of rare immune deficiency, yet to be determined. A lifetime of infections without an elevated white cell blood or fever. Very grateful to be alive, very thankful for the friends who’ve supported me and for access to literally millions of dollars worth of medical care. I’m not the bubble child, I’m somewhere in between.
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