Negligence on your part


Of course you have to stand there with Noah and his medicine–in fact, you physically need to give it to him to make sure he takes it.

Noah knows that you don’t believe/not supportive of his immune deficiency, so he’s extremely self conscious about it around you. He’s told me.

Don’t be that parent who accuses their child of being a drama queen/hypochondriac, that their time is being totally wasted on their fantasy medical problems,

Only to find out at the hospital that the child indeed had an emergency appendicitis.

[My mother in the car with me.

November 7, 1992 Fair Oaks hospital]

Because Noah and I look so healthy–I didn’t have a fever, just a slightly elevated white cell blood count–

Nobody–even the doctors–thought I was very sick that day.

I had to BEG a surgeon to cut me open, and thankfully for me he did.

You will need to be the one to advocate for Noah at some point in his life “his mother had unusual health problems, this runs in the family, etc etc”.

Doctors who don’t know us have a hard time believing it, because this is so rare.

That’s why we really need to solve it–I don’t know how many times I’ve been super sick, even close to death [bacteremia, Nov 1, 2005 St. Joseph’ s hospital, Burbank], and still *looked totally healthy*.

It’s an extremely dangerous situation. You’re supposed to look sick when you’re sick.

I don’t want Noah to go through the hell I’ve been through.

On Aug 1, 2016, at 7:21 AM, Luke pals <l_nelski> wrote:

I reminded him in the evening and the morning. I remind him a lot. He must have chosen not to, or forgotten repeatedly. I didn’t know he was not taking them. So I guess i have to stand there and make sure he does.

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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