“Some mornings, it’s just not worth chewing through the leather straps.” ~Emo Philips

Let’s review what we already know …

  • Pearlsky’s “problem” (besides me as her father) is that she cannot “make” a specific amino acid (as you and I do).
  • Giving her that amino acid, orally, keeps seizures at bay, and enables her to live.
  • School nurses
    • suck.
    • are assholes.
    • live in old barrels, under the layer of scum.
    • can’t get real nursing jobs.
    • are living proof you can conceive by anal sex.
  • Pearlsky needs to get a specific amount, at specific times.
  • There are doctor’s orders for said amino acid.
  • For reasons unknown, the school nurses refuse to give her said amino acid.

Okay then, on to today’s emails …

I was told by the aide on the bus that Pearlsky did not get her amino acid on time, it was an hour late. When I asked why, I was told that the aide with her did not know about it.

It’s been a tough couple of days so I am not in top form today. I sent one email, then realized I could have done better, so I followed it up.

To the new Special Education Coordinator in the high school and the Assistant Superintendent for Student Services …

Pearlsky did not get the one medicine she needs to thrive on time, the primary medicine that keeps her seizures under control, because the aide with her did not know about it. She got it an hour later.

It is too bad the nurses continue to refuse to give her this doctor prescribed medicine, and even though it is to be given at the same time that Pearlsky receives another medicine from the nurse, they do not bother to check that Pearlsky even gets it. In other words, at noon Pearlsky gets two medicines, one from the nurse, and one from an aide. And, if the aide does not give it, the nurse does nothing.

This is insane. And Pearlsky suffers.

Then a bit later I followed up …

Just to follow-up, please note that Pearlsky’s teacher instituted a sign-off sheet this year that comes home every day. Some nurses do, in fact, put their initials on the paper when they give medicines, others apparently do not want that responsibility. Here is today’s sheet that came home.

Note that the nurse (or someone unknown) gave Pearlsky her noon Tegretol at 12:15, did not own up to it by not signing (which, by the way, violates her IEP which says that proper notification will come home), and had to have seen that the noon amino acid was not given.

The nurses know that Pearlsky’s diagnosis is “Inborn error of [amino acid] metabolism” … yet ???

Have I mentioned my contempt for school nurses?


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