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May 24th, 2012
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Yesterday I had to go up to the school because the nurse called to say that Olivia had pulled out her site. On an overhead projector. I have no idea how she did it (and forgot to ask when she got home), but she did. Off I trotted, with a new site, the Sil-serter and a back up reservoir in hand.
When I got to the school, I had to cool my heels in the nurse's office waiting room. When I was a kid (no, it's not the up hill, both ways in the snow barefoot line, so hush), the nurse's office was a desk and a cot. It was dim and cool in there, a great place to lie down when you were feeling poorly or *ahem* hadn't studied for a test. I remember lying there, tracing a pattern in the ancient wallpaper and trying not to freak out over the crucifix hung over the head of the bed. (READ MORE)


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Oh, hi.  It's been a while, hasn't it?  Yeah.  Slacker central over here.  I read and I think about things to write but the motivation just disappeared last month (and the month before that, if I'm being honest).  I'm hoping the new year will kick my butt into action a little bit and have me posting here more often.

 

On to the latest: 

 

Olivia has been going to the nurse too frequently to treat low blood sugars.  She usually has stuff in her bag to treat, but the nurse has been insisting that Olivia go down there for every low.  In O's IEP it states that she can treat in class and there's a doctor's note in place, so I don't quite get what the deal is with the nurse.

 

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Charlie begins first grade tomorrow. He will have two health aides. One in the morning and another in the afternoon. Neither aide has seen a pump and I'm pretty certain, they've never tested someone's blood sugar. So ...


Susanne will take the first shift, stalking with binoculars from an old, abandoned house across from the elementary school in army fatigues.


As for me, I'm going undercover - enrolling in Charlie's class as a transfer student from Ghana.


We do feel fortunate that the school has decided to provide health aides, but we just hope that they can slip somewhat into the background. We're also very much aware that this sort of special arrangement could be socially detrimental for Charlie if we were to continue beyond first grade.  For now, however, it gives us a little peace of mind and it buys us time for Charlie to learn how to test himself, and bolus himself, etc.

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Last week, I spent some time at work familiarizing myself with the School Advisory Toolkit. It's a guide for newly diagnosed or new to school parents that walks them through how diabetes plays into education. It also includes sections for the teachers and administrators to make sure all sides understand the issue.

 

As I reviewed the SAT (School Advisory Toolkit), I recalled my own education with diabetes. Since I was diagnosed in March when I was 4 years old, I'd made it a short way into pre-kindergarten, which also meant that almost all of my school career would be entwined with diabetes.

 

In pre-K, I had the most understanding and comforting teacher. She took extensive time to learn what needed to be done for me. Although I have no real recollection of her, I know that she was a strong foundation for both my diabetes and education. She was a creative teacher who loved her kids.

 

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This morning I set about getting Lantus and figuring out the doctor situation from yesterday. So I followed my plan to call the new doctor's nurse first then the CDE I know at the clinic if that didn't work. I was prepared to raise a little "cane" if need be, but desperately hoped they would make it easy.

 

I called the new doctor's nurse wanting to speak to the nice one that I spoke to yesterday. Unfortunately, she wasn't in. So I ended up speaking to another nurse, who was quite rude. When she first began the phone call, she wouldn't let me speak to tell her about the issue which got the whole thing off to a rocky start.

 

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There is nothing comedic or trivial about handicaps, disabilities, and/or special medical or developmental needs. "Reduction to absurdity" is a technique of debate in which a premise is taken to, or past, its logical extreme. While this can be used to belittle an opposing viewpoint (Google "Godwin's Law"), it can also encourage thoughtful discussion.

 

I will also aim to use the definitions of student accessibility to public education expressed here.

 

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I called my endocrinologist today for my lab results. One of his nurses got on the phone to tell me that my lab results were "stable" and "a letter had been mailed on the 2nd." She also went on to say that the doctor wanted me to see the diabetes nurse educator. The moment she uttered those words, I could tell that she was done and wanted to hang up the phone. But I wasn't.

 

I asked what my A1c was, not caring about the potassium and other kidney function tests. I didn't want to wait another week to receive the envelope in the mail. She hesitantly replied that it was 7.4%. As if teaching a child, she responded that it was okay although we should be aiming for under 7%. I didn't want to say that last week, the very MD had told me that a 7.2/7.3 is FINE! Okay, I did want to say it. But I didn't.

 

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Both of my doctors, my endocrinologist and the doctor in charge of my bio-identical treatment, have sent disability status letters for me. It actually took very little effort, despite the initial feedback from the nurses in the beginning. I'm happy to get these out of the way and go forward with the process. I'll also be writing my own letter to support my case with a personal note.

 

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Olivia had a pretty decent low on Friday. She was 95 on initial check and dropped to 60 five minutes later. She informed her teacher and immediately asked to go to the nurses office (which is our protocol).

When she relayed the incident to me, I asked if anyone had walked down with her. "No," was the answer. I didn't get mad at her, just said that she needed to have someone walk her the next time she was that low. Dropping 35 points in five minutes concerns me and makes me wonder how much lower she's going to go and how fast.

She wound up dropping to 40 in the nurse's office, but came back up easily and returned to class. She missed her social studies exam because of this low, however. In the car on the way home, she told me that her teacher said it would be ok for her to make up the exam.
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What the hell just happened?

 

Remember me blabbing away about being so fortunate and grateful to the school for providing classroom aides for Charlie? Aides, who would blend into the background and seamlessly check Charlie's blood sugar, count out carbs and give him insulin? Remember how Susanne spent the first day of school training the aides in how to use the pump? Remember how we met with the school officials and how they all signed off on the 504 plan? Remember how it was the school's idea in the first place to hire these aides for the very purpose of testing blood sugar and administrating insulin?


Well, forget all that.


Oh, and remember the morning aide who has type 2 diabetes? She has really been working out great.


She's leaving. Found another job apparently. Leaving the glamorous life of pricking fingers and counting crackers.

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Julia
JuliaJulia lives behind the Tofu Curtain, in the Pioneer Valley, in Western Massachusetts. It's a nice place. She likes it there. Her eldest daughter, Olivia, has type 1 diabetes. She's also 13. It's a real toss-up as to which is more difficult -- the diabetes or the teen-age drama. (Read More)
Brenda Bell
Brenda BellBrenda was diagnosed with high blood pressure, high cholesterol, and Type 2 diabetes in July 2002. After a rocky start, her diabetes has been diet-controlled since January 2004 and she hopes to keep it that way for as long as possible. (Read More)
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