And The Winner Is...

My son.

First off-- thank you to everyone who commented on my previous post.

Armed with all of your excellent suggestions and many words of encouragement-- I sent off the following email to the school psychologist (whom I've discovered is the on-site coordinator for 504s):

L____,

Could you give me an update on the status of my son's 504 plan? Did you receive the paperwork I signed and sent back to you?

It's been nearly three weeks since I've heard anything, and I'm extremely anxious to get this thing put into place before the end of the school year. Is there anything I can do to help facilitate this process?

If you haven't yet received the medical information you requested from Joseph's endocrinologist, I could give her a call.

I'm sure that Dr. C____ would be happy to help expedite your receipt of Joseph's relevent medical history-- given that many of her diabetic patients have 504s and she strongly agrees that Joseph needs one as well.

Thanks for all of your help!

I then receive a note back saying that they are "waiting for a letter from Joseph's doctor."

Hmmm.

You see, I already got a letter from Joseph's doctor-- in October.

Back when the school nurse balked at my insistance on including accomodations for academic testing in Joseph's Health Management Plan.

(She just didn't see a need-- expressing disbelief that, for example, a very high blood sugar could affect Joseph's academic performance.)

At the time, frustrated by the nurse's response, I'd gone to Joseph's endo and asked her to review the plan I'd prepared.

And to write a letter approving its contents.

Here is what she sent me:

Dear School Officials:

Attached please see the individualized diabetes care plan for Joseph ___. I have reviewed and approved this plan for his school time diabetes management. Recent research has underscored the significant effects of both low and high blood glucoses on learning retention, mood, and academic performance. Diabetes care must thus be individualized to maximize glucose control in each child with diabetes. The attached plan meets Joseph's care needs.

The school nurse knew I had this letter, yet she told the school psychologist that she was waiting for Joseph's endocrinologist to send a letter describing "what needs to go into a 504 plan" for my son.

Again-- hmmm.

So.

I call the nurse.

"Hi, B-- I'm just checking in on the progress of Joseph's 504. I got an email back from L telling me that you're waiting for a letter from Joseph's doc and-- "

"Well, Sandra," she says, "Dr. C was very busy when I called her on this, and since spring break is next week, I told her there was no rush."

Hearing this made my blood boil.

(Just last week, Joseph's teacher made it clear to me that if we don't get a 504 in place soon, folks at the District will see no point in going through this process until next year.)

"B-- there is a rush," I say firmly. "We need to do this now if we want something established before middle school- "

"Well, I don't know... Joseph's been doing really well with his Health Management Plan-- and there are plenty of other kids with diabetes out there in middle school who are doing just fine."

"Yes, you're right-- Joseph has been doing well with his current plan. But that's precisely why we need to do this now.

"Because if something goes wrong-- there isn't going to be any grandfathering 504 protection."

I go on to describe some of the worst case scenarios, and then:

"B-- what exactly are you looking for from Joseph's doctor?"

"Well, we need to know what she thinks is necessary- "

"But I already have a letter that should cover that-- "

"Well, I'll be getting something back from the doctor sometime after the break... we'll let you know... "

She's not hearing me.

I tell her "thanks," hang up-- and call the psychologist.

And read her the letter.

"Sandra-- that's exactly what we need in order to move forward on this."

"Beautiful-- I''ll bring it by in half an hour."

And despite the fact that one is sitting in the nurse's office (just down the hall from the psychologist), I decide to bring along yet another copy of Joseph's plan.

Shortly after my arrival, I hand the psychologist both the letter and plan. She quietly looks through the latter document, commenting that she's "never seen it before."

(Yet another "hmmm.")

"Sandra," she says finally, "would it be possible for you to send me an electronic copy of this? Then I can just cut and paste the whole thing right into the 504."

"You bet I can."

Then I smile for the first time at this wonderful, wonderful woman.

"And, when we have the 504 meeting-- which should happen the week after spring break --" she continues, "we'll only need to discuss possible additions to what you already cover here."

"Awesome," I say, unable to stop smiling.

So there you have it.

I'll let you know if we hit any more bumps, but so far, things are looking very good.

Fighting for a 504

It dawns on me that I haven't heard anything about Joseph's 504 plan in nearly three weeks.

(Not since signing and sending back the consent for evaluation and medical release forms.)

So I call his teacher.

"Sandra, I heard something just this morning," she tells me. "There was a meeting with the principal today. Now I wasn't there, but I was told that Joseph's name came up toward the end. Seems that folks agreed that his Health Management Plan was enough-- that a 504 wasn't necessary."

"What?" I choke. "But that's not enough. Not by a long shot- "

"Now, hold on," she continues, "I told the school psychologist that I disagree. That Joseph will have no protection going into state testing-- and with more testing in middle school, he's really going to need this.

"Sandra, push for it. If you have to raise the roof, then do it-- and I promise I'll back you one hundred percent. "

(Have I told you all lately how much I love Joseph's teacher?)

So I'm sending an email to the psychologist this morning, putting in a call to the principal, and reviewing everything I can find on 504 plans.

And trying not to go ballistic.

Yet.

If anyone out there has suggestions, has been through this process and met resistance, I would very much appreciate any and all advice.

Moving Along

Hey, I'm still here.

And I'm no longer completely freaked out by my not-so-good eye appointment.

Though I can't say I'm not a little scared-- sometimes a bit more than a little.

Just not so damned freaked.

Anyhow, as a number of you wisely suggested, I did stay away from Google.

At least initially.

You see, a couple of days after writing my last post, I confirmed that there is indeed a history of glaucoma in my family.

Turns out one of my uncles got it while in his 50s-- and at least two other cases are likely.

And, well... I sort of panicked.

But then, I thought:

Wait a minute-- when the technician checked my eye pressures she said they were "good and low."

Aren't increased pressures the big indicator of glaucoma?

So I checked.

But Googling "low pressures" and "glaucoma" only made things worse.

Seems a third of all cases of the disease are what's known as "low tension" or "low pressure" glaucoma.

And there's a correlation between this type and a history of low blood pressure (my normal bp is -- and always has been -- around 90/50).

Well that sucks.

So there ended my Googling anything to do with glaucoma.

I figure that whatever I find won't matter-- it's not gonna affect my test results.

And speaking of those tests, did I mention when they're to take place?

That would be June. The 14th and the 19th.

Lovely.

So.

Best to keep busy and think about something else until then.

Thus, the Saturday after that not-at-all-good eye appointment, I visited the Botanical Gardens with Ryan and the kids.

Where we saw many beautiful things.

Eye Candy, if you will:





And the following Saturday we made a day trip to Chicago.

In addition to walking around our old neighborhood and eating at our favorite noodle joint, we spent the afternoon at the Shedd Aquarium.





Yes, a good (and very relaxing) time was had by all.

Now, you may be wondering what's been going on during the many days surrounding these two Saturday excursions.

(Obviously, not much time spent on the computer.)

Unfortunately -- since Evan has just climbed on my lap -- that, my friends, is gonna have to be another post.

I Hate The Drops

Yesterday morning.

Walking into my eye doctor appointment, I have only one concern-- getting out in time to pick up Evan from her preschool class at the Y.

So naturally, after taking a seat in the exam chair, I ask the technician:

"Do you need to dilate my pupils this visit?"

"Yes, we do."

Dang!

However, when I explain why I need to leave in an hour, she says:

"No problem, we'll have you done in plenty of time."

Fabulous.

Anyhow, after reading and reciting countless rows of letters-- both near and far away -- we discover that I need stronger prescription lenses (man, I'm getting old). And then, it's time for the drops.

I hate the drops.

(But I gotta say, it's a whole lot worse watching Joseph get them.)

We begin with the numbing solution-- so she can check my "eye pressures."

A seasoned pro, she squirts the stuff in both eyes so fast, I hardly know what's happening.

Then, picking up something that looks much like an oversized lancing device, she steps forward and "pokes" the thing at my right eye.

"Okay, let's do this again," she tells me, "and this time try not to hold your breath-- that increases the pressures."

"Oh-- huh. Well, uh... " I begin tentatively, not wanting to sound like a wimp. "What ever happened to the machine with the blue light?"

"Do you prefer that? Well, I think this is so much easier. You just have to relax and breathe."

Amazingly, I do-- and she gets the test done on the second try.

Next, she picks up a small dropper filled with the dilating solution, and before I can brace myself, the drops are in.

"Wow," I tell her with a smile, "you're good."

And now I'm alone.

Waiting for the eyes to dilate, thumbing through an old issue of Better Homes and Gardens, I sit and wonder how Evan is liking her new class, and how Joseph is doing on that spelling test I helped him prep for at breakfast.

Dr. C finally steps in.

We chat about the family, my eyes -- the whole time, I'm thinking:

Man, I wish she was a pediatric ophthalmologist-- Joseph would really like her.

Then she has me lean into the chin and forehead rests in front of me, as she looks into my dilated pupils.

She does this for a long time, saying nothing.

"Sandra, why don't you sit back. I'm going to take a look inside your eyes using this," she says, picking up a rectangular shaped device that's a little larger, but flatter than Joseph's insulin pump. She then pushes a button on the side of my chair-- causing it to rise a couple of feet.

Hmm... she's never done this before.

While holding the device close to my right eye (and shining its built-in beacon of a light into that eye), the doc has me look up, high to the right, down, etc... repeating the exam with the other eye.

Once finished, she lowers my chair, takes a seat herself, makes some notes-- and then begins rifling through my file.

"You came in last year, didn't you?" she asks-- obviously not finding the results from my previous appointment.

"Sure did," I tell her.

"Wait-- here we go," she says, holding up a piece of paper. For a few moments, she quietly studies its contents.

Finally, the doc turns to me, takes a breath and in a serious tone, asks:

"Sandra, is there any history of glaucoma in your family?"

"Excuse me? I- I don't know... why?"

"Now, this is probably nothing to worry about, but I'm seeing some optic nerve swelling."

"Oh."

That's all I can say.

"Sandra, I'd like to have you go upstairs and have a photo taken while your pupils are still dilated-- so we have a baseline.

"And then I want you to come back in three months-- I'd like to do a visual field test, and another dilated exam. Also, I think it might be a good idea to get a corneal thickness measurement. I'll write all of this down and you can make these appointments before you leave."

"Okay... "

She's writing, and I'm just staring at the back of her head.

"Dr. C-- " I say, finally thinking of a question, "which eye has the swelling?"

"Both of them."

"Oh."

I blink back a few tears.

"Now, Sandra," she begins, noting the look on my face, "I don't want you to worry-- I'd just rather be cautious than not. When you come back in, we can go over all of the results that day. In the meantime, try not to worry."

Swallowing down what little saliva I have left, I ask--

"If it's glaucoma, how is it treated?"

"You would have to use eye drops to keep the pressures down."

And then I don't ask her anything else.

Because I'm just too stunned to think of another question.

After getting the photos taken and scheduling my appointments, I quickly make my way out of the building, across the parking lot and into my car.

Thanks to those damn drops and the bright sun hitting my wide-open pupils, my eyes are killing me.

And my mind is racing.

Later, after talking on the phone with one of my sisters and asking her if there's any glaucoma in our family-- she calls back and says many wonderful, reassuring things.

She also tells me that one of my uncles may have had glaucoma. And my mother's mother.

And possibly, my dad's sister.

Man.

Another One Bites The Dust

"Mom, I feel low."

"Okay, Bud-- let's see where you're at."

Joseph washes his hands, dries them on a dish towel, and picks up his meter.

A "beep" and then -- 66

"Should I take two, Mom?"

"Yup-- and why don't you just disconnect from your pump. We need to do a set change anyway... "

While I go collect the necessary supplies, Joseph sets his insulin pump on the kitchen counter, pulls up a chair and begins crunching away at two glucose tabs.

Returning to the counter, I press the backlight button to "wake up" the pump, and immediately-- the thing alarms.

Loudly.

Hmmm.

Peering down at the display screen, I see the words "Call for Service" -- along with instructions to "remove the battery to stop the pump alarm."

The pump then begins to vibrate -- almost angrily, it seems -- as if to drive the point home.

Alrighty, then.

The last time we got this error message, an Animas rep told us that the pump will alarm occasionally if it needs to be re-booted due to "a general processing error."

We would only need to be concerned if this happens "two or more times within a 30-day period." (It's been over three months since we last saw this error message.)

So, unfazed, I search through a kitchen drawer for a nickel so that I can unscrew the battery cap.

I pop the battery out, then back in.

The remainder of the set change goes off without a hitch.

Despite this fact, I decide to call Animas-- I mean, the pump did say "Call for Service."

As I grab our cordless phone and head downstairs, Ryan mentions that the buttons on the pump seem "a little less responsive lately"-- that you have to press them more than once sometimes when you unlock it.

Whoa.

Moving back up the stairs, I call out:

"Hey, Joseph-- have you noticed anything funky about the buttons on your pump?"

"Well, sometimes they kind of hesitate when I'm unlocking it."

I dial Animas.

Immediately after describing the alarm and error message, a pump support person instructs me to re-boot.

I tell her that I've already done so and all appears well -- but then I describe Ryan and Joseph's problem with the buttons.

"Is the rubber that covers the buttons coming away at all?" she asks.

"I don't think so-- let me go check."

I run back upstairs, look over the front of Joseph's pump, and tell her: "Nope, it looks fine."

And then as we're talking, something dawns on me (and on the pump support rep as well). With my hand over the phone, I call out:

"Hey, Ryan, Joseph-- are you pushing the buttons to unlock the pump, and then finding that you have to push them a second time before it unlocks? Is that what's going on?

"Yeeess," they respond.

"Okay. You guys need to wake up the pump first -- by pushing a button -- and then unlock it. That's why it seems like it's hesitating. It's a two-step thing."

"Oh." they both say, smiling sheepishly.

I then return to the patiently-waiting pump support person and -- feeling a bit sheepish myself -- tell her that "it seems my boys just forgot the pump wake-up procedure."

So we're all good.

Until later-- when Joseph pulls his pump out of its case to see how much insulin he has on board.

"Mom, look at this!" he says, looking stunned as he holds his pump out to me.

Oh. My. God.

The rubber over the backlight button at the top of his pump is pulling away.

(Clearly, my earlier examination of the pump's rubbery surfaces was less than thorough. )



For when he flips the pump over, and touches the rubber area just below the buttons, we discover that this too is no longer attached.

At. All.


You've got to be kidding.

When I call Animas back, I'm told that while Joseph's pump is still functional, it's no longer waterproof -- and that a new pump will arrive by noon the next day.

The following morning -- before I finish my second cup of coffee, a package arrives.

Joseph's fifth insulin pump.

Am I upset? Are we freaking out about this?

No. Not really.

Yes, needing yet another replacement pump is disconcerting-- but considering that our very active eleven-year-old child wears this thing 24/7, it would be surprising if nothing ever went wrong with this device.

And this last pump worked beautifully for over a year (a much better track record than its three predecessors).

We've got two years left before insurance will cover a new pump, and as it stands now, Joseph wants to stay with Animas (he really loves this pump).

Quite frankly, I like it too-- and with one exception, the service we've gotten from this company has been stellar.

But still.

Five pumps in two years.

I guess we're just gonna have to see what the next two years bring.

(And fingers crossed, it won't be yet another pump.)

We're Diggin' This Snow

As most of you know, we midwesterners got smacked with (not one, but) two major snowstorms last weekend.

The result?

Massive amounts of heavy, wet, drifting snow.

Sounds awful, doesn't it?

Well people, my kids could not have been happier.

You see, whenever we got snow this winter, bitterly cold temperatures kept it light and powdery.

Fine if you're into skiing-- but if you like to throw snowballs, or build things with it, the stuff is worthless.

Needless to say, my children (and their friends) took full advantage of the awesome conditions-- the fabulously sticky snow, and the warmer (low 30s) temps...


This year, insisting on making a "no-adult-help" fort.

Thus, they:


Burrowed through the front of a snow bank, made a turn inside...


and tunnelled out the other end.

Yes, they were all quite pleased with their handiwork.



Oh, and since the kids wouldn't let me help them with their fort, I made a snowman instead...


Yeeee-Hah!