Fade to Black….

It’s time, guys! Thanks for hanging out with me.  I don’t mean to be trite- five years ago when Ben was first diagnosed I couldn’t imagine the next day.  There was nothing. Nobody.  Me and a sick baby and not so much information on how to take care of him.  And now here we are.  Devices galore, every now and then a night of uninterrupted sleep, full days of school for Ben…. And more than doctors, friends, or family, it has been other parents of these kids (some are friends too, thank you, thank you, thank you), and the blogging parents (thank you), who  have shepherded me through this so far.   Also- thank you blogging adults with T1D for helping me see the future.  And making me sort of want to cry and reminding me why Ben needs to be a lady-killer.

I still devour their blogs, but mine is not really relevant anymore, at least not for its initial purpose.  I have a big kid now.  I am in the long process of handing over the reins.  And now I’m in graduate school (nutrition), so time is tight.  Tighter.  But I have so much to saaaaayyyy still.  Maybe will resurrect this old thing in a year or two.   A more professional version.  Perhaps with less swearing (though the complaints about my language stopped when I told my mother she was no longer allowed to read my blog).  Maybe we can dig deeper into how gluten really is the root of all evil.  Or discuss the Autoimmune Protocol (this last year I lost the ability to eat most food groups without ill effect.  Thanks, life!)   Or take a moment to talk about PTSD.  How is unconscious fear shaping how you  live?  We CAN make new neural pathways.  Just need some orgasms (grab a partner- or not)– or some magic mushrooms, they’ll do the job too.

Mainly, the time has come for me to be more of a guide for Ben.  Outside of diabetes.  Yeah, I spend every day making diabetes my bitch, but apparently there’s more to this parenting thing.  Like all the rest. When he was first born I had a simplified idea of how to raise him- teach him to be nice to animals and to read a lot of good books.  Those two umbrella rules should take care of a lot more….

And spiritually, what to say? His early manifestations of my own ambivalence, e.g., “When someone cuts down a tree, the tooth fairy cries,”  were cute and funny, but it’s getting more serious.  As he wrestles with my mortality (ease up kid, please tell me this is just a normal kid stage, and you’re not some kind of cancer-sniffing dog) and his own, explanations are getting really complicated.  I vacillate between stories of a potential heaven and scientific explanations of how we never just disappear; we decompose, and the atoms that make us up get to be parts of other living things.   But then came the tears. “What if I’m stuck being a tree for a thousand years and have to wait to be something else?  What if you’re not my mom in my next life?”  Obviously I’ve made a mess of things.

So, a refocusing of efforts is in order.  So long, friends. You’ve meant the world to me.

 

1411

I love you, baby.

 

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Penultimate Post: On Hugs

I thought I was doing a good job.  Maybe I got a bit lazy.  Lazy is the wrong word.  No, not complacent either.  More like, I’ve put in my hours, I nailed it, I’m signing off.  But when I did that, signed off…my kid was waking up.

All the tedious details of this whole thing- the administrative bullshit (hey Dexcom, this sensor failed early, please send new one; hey medical device supplier company, is it too early to refill, hey random person across town, yes, I’d love those extra supplies, we’ll swing by on Sunday and pick up), the mind-fuck that is packing perfectly releasing carb/protein lunch and then snack and then one more for after school snack- please stop with the snacks, and then night- this is when I can properly FEED you, so I will stay up as long as it takes to micromanage this BG, oh wait- a device failed! Of course it did! Always now.  Ok, new site or new sensor and two more hours to calibrate….

And then he’s awake.  For a full day.  And I’m a half day into this thing.  And maybe I’m not as demonstrative in my love as I could be.  This has been buzzing around the periphery of my consciousness as I barrel through this life, but reading about other people needing just a hug has reminded me I have a baby who needs to be held, like Harlow’s monkeys , and maybe I could be softer. I really want to be the cloth mommy and not the wire mommy who just  had the (carb-counted) bottle of milk.

hug monkey

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6 is the new 13?

What. Is. Happening???  Child turned six less than a month ago.  Is complete monster.  Daily.  The last few nights he has had unexplained high BGs. I just bolus, drink some wine, bolus, wonder if he’s getting sick, looks totally like getting sick BGs, bolus.  Finally he comes down, and I go to bed.

But tonight!

BG will not come down.  Bolus, bolus, new site, bolus, bolus, finally give a shot, take off pump and bolus into sink, yes, working.     Is this hormones??  Is this a preview of puberty?  Please, no.

I can’t take this:  IMG_3910

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Long Overdue Update on Kindergarten and Diabetes

This is how late this post is. Ben started first grade today.  And that was late due a teachers’ strike.  As much as I was tortured by the unexpected days-long 24 hour child-rearing responsibilities I was totally unprepared for (had forgotten how to do?), I am happy I live in a place where teachers can unionize unlike my poor home state of Wisconsin- governed by a complete idiot who hates teachers and nature and just may be your president someday….

And the first day was a breeze, in part thanks to the infrastructure set up last year.  Last year, I got to meet a newly hired nurse two days before school started. She seemed really knowledgeable, had a good grasp of diabetes (insulin lowers while carbs raise blood sugar- why so hard for so many??) , and in fact had diabetes (type 2) herself. Turns out she also had dementia.  (My diagnosis)

I realized the 504 is just paper that gets filed away and that I needed visual cues to action (brightly colored, GREEN, YELLOW, RED tables) on her BG log, BIG BLACK writing on his glucose tabs container reminding her how many to give, and probably should have put something on my kid’s forehead too, but I’m sure he wouldn’t let me.  And I documented each whack thing she did through emails to her which I sent to the the school district’s health manager.  I asked the principal to go in and tell the nurse something and to check back in 30 minutes to see if she remembered it. I tried to not sound crazy.  It took a month or two of calm emails pointing out extremely dangerous situations created by the nurse, but she was eventually replaced by TWO competent nurses.  (We have a lot of T1s at this school.)

Besides learning that sometimes people need to be re-purposed, and that I can help that along, I learned that we need a mechanism for making sure the little guys eat the lunch they are bolused for.  They get less than 15 minutes to eat, sometimes less than 10- with recess on the other end of lunch.  They can barely unpack their food with their teeny hands and buzzy-buzzy heads let alone eat it in that time.  So I had to ask that his lunchbox get checked at some point after lunch.  And! How to pack a speed lunch? A gluten free speed lunch at that.  This is where I am still learning.  Ben can wrap his little mind around 3 items.  More than that is a burden.  How to protein it up without causing colon cancer down the line (relied so heavily on cured meats)?  Not tons of protein in these bars but at least some fat to slow things….

And how to deal with gluten every other day?  Beware, in kindergarten there will somehow be more birthdays with cupcakes than there are kids in the class.  And every holiday will be celebrated with glutinous creations- gingerbread house for Christmas! Decorate cookies for Valentine’s Day!  Thankfully his new first grade teacher sent out a letter at the outset saying there are kids in the class with various food allergies as well as a few kids with diabetes, so let’s just celebrate birthdays with songs and cards.   Yes, let’s.

I learned to trust Ben.  I did not put a lock on his pump which surprised some other parents of T1s.  What if he plays with it, boluses for …nothing?  Well, he did that once at home, and he learned his lesson.  Ultimately, he has to know what is going on.  I was grateful for that when one of the new competent nurses called me at work and asked how to deal with a situation, and I could hear Ben in the background answering her- correctly.

I learned to really dial back on the basal rates at the witching hours of 2 hours post bolus (always somehow coinciding with recess or P.E.).

Most importantly, I learned he was not going to die at school.  Seriously. It took a while for me to relax, but I soon learned to enjoy working for hours at a time without constant worry.

I’m going to enjoy this for a while because I know the next stage is even more hands-off, and some day there will be no oversight.

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TEDDY speaks- in very short sentences

I’ve got to put this beater blog to rest soon.  Tot in title no longer tot.  A few exorcisms first….

When I first heard about the TEDDY (The Environmental Determinants of Diabetes in the Young) study a few years ago, I thought, holy shit, exactly, it IS environmental, this inexplicable rise in incidence – and incidence in the itty bitty ones.  I knew it!  What is it, what is it? Tell.

So many theories had been nagging me.  I have this split frame vision of Ben playing in the dirt, gathering rocks and sticks at 10 months old, like he continues to do five years later.  And then I see the lawn maintenance guys come do their business, maybe spray something or other here and there….   And there are more ideas knocking around.

I had a chance to hear an investigator on the TEDDY study speak recently, and the data is in.  Not for us.  For them. He was careful not to give away unpublished results.  (Hey, summer is ending guys, sit down, and crush out some papers.)  Anyhow, he did share information on antibodies and also some interesting associations (certain genotypes) and non-associations (dairy! I don’t believe! can we talk about A1 and A2?).  What he found most exciting was a viral trigger.   Let’s say your child has antibodies but hasn’t converted yet… get a vaccine for this virus, and maybe never get diabetes?  I think that was the gist.  I went to some dark places there.  And I have to admit, there was a split second in which I felt like that actress at the Oscars who has big fake smile, clapping for other winning actress.  Not exactly— because I would only feel happy if diabetes could be prevented in other children. But I saw my kid- and yours- as this weird dying breed, no one gets diabetes anymore, there is just this slowly dying out population of people who were diagnosed before big breakthrough.  Technology (pumps, CGMs, closed loops!) then of course would lose interest….  In the meantime do I need to be prepared to go all breaking bad and read all the lab notebooks of Eva Saxl’s husband?  No, thanks to type 2 diabetes, at least insulin will always be made….Ok, dark, dark, moving on.

He said there was an association with maternal stress/ depression or family issues.  Whoopsies.  Sorry, kid.  Should never have read Anna Karenina, shouldn’t have done half the shit i did….     He did not mention anything about gut microbiota.   That better be coming along soon with future publications.  Others have demonstrated an alteration in gut microbiota preceding onset of T1D.  And I think back to his medically managed birth.   Apparently, I, like 10-30% of pregnant women, had a vagina colonized with Group B strep which is treated with IV antibiotics during labor to prevent a less than 1% chance of complications in the newborn.   I wasn’t even asked, there was just another line hooked up to me.   Did I wipe out his good bacteria?  I don’t know. Look, I’m sorry about my dirty vagina.  I’m sorry I let you play in the dirt (no, I’m not).  I’m sorry that after a few months I had to quit nursing and give you formula with Round-up laden soy (fuck YOU, Monsanto).  Totally gave you diabetes.  But also gave you intellectual and athletic ability and a cute face?

TEDDY aside, some risk/ protective factors are being established.  Yes to Vitamin D.  No to gluten.  Vitamin D encourages the immune system along the less-autoimmune route.  And gluten?  Devil.  Some can eat it (I’m jealous), but some- anyone with autoimmune issues or at risk of- should stay away.  Get definitive information on your child’s antibody status here.

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Diabetes Camp… or Award for Five Years of Service

IMG_3081

It crossed my mind the other day that it is about that time, the five-year marker of Ben having diabetes.  A couple years ago I decided I would not be marking the anniversary of his d-day, and I don’t mean to, really, but five years?!?  What about me? Do I get a certificate of service?  A plaque?  A trip to an exotic locale?  And then, I realized, holy shit, I’m getting my service award now!  Ben’s at diabetes camp all week, and his dad flew in to share camp experience and to have him nights.    (Truly, congrats to Ben and all on five years, but I’m not going to tell him that because he doesn’t know any better, and he is a star every day, what’s another year….)  Immense gratitude for camp and for Ben’s dad to share his limited time with his kid with a bunch of other kids.  (I think you should sometimes have to miss people you love.  Ben and I don’t get to do that much with each other.)

This is my reunion with Ben after 5 days without him.  He’s so cute when he’s sleeping….

Ahhh, diabetes camp.  No one else gets it.  I mentioned it to my dad, and he went off on how Ben’s not “special needs” and doesn’t need to be treated as such.  Agreed.  I’m often blown away by his badassery, but I still fully embrace him being in a world, just for a few days, when everyone stops to get BG checks, count carbs, administer insulin.  It’s a powerful thing for these kids.  Non-stop fun except for when it does stop, briefly, and everyone stops, takes care of business, and then back at it.

Next camp on the wishlist is Bearskin Meadow Family Camp.   Sleep under the stars at Kings Canyon National Park.   IMG_3087

 

 

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Two Hours into the Animas Vibe Experience

First, I’d like to point out that I made a poor management decision in choosing to embark on this new pump experience at the boy’s bed time (and a late one at that-thanks Pacific Northwest summer).

Or perhaps it was a genius decision in that boluses are taken out of the picture.  No. Stupid decision. Will not sleep much tonight.  Also, this questionable choice is currently paired with Dexcom reading lower, always lower. I can see 6 am now.  Oh, you’ve had a solid 2 hours of sleep, well, BEEEEEEP, low!  Psych.  Not really. Just wake up, test, and find a smooth 86.  Anyhow, back to Vibe.

Setting it up was an arduous task of button pushing and screen navigating.  Not a great first impression.  Also, am suddenly panicking about 5 year old (almost 6? reads kind of ok?) being able to tell semi-trained summer daycare people what is what.  He was a boss of his Medtronic pump.

But.  He has been trending low (not quite as low as liar Dexcom says, but still) since starting the new pump, and I take that as an awesome sign.  A major factor in this pump change was me being regularly pissed about the insulin I was ordering up not actually being delivered (not a scientific conclusion- just one of someone obsessed with factoring in all elements- activity or lack thereof, growth, adrenaline, fat content, protein content, temperature, phase of the moon….), and he is certainly getting insulin right now.  I just found this great Good, Bad, and Ugly Review of the Vibe and fell in love with #5 under Insulin Calculation.  Maybe a faster subcutaneous bolus speed will change things for us.   While waiting out the last low I spent some time enjoying above reviewer’s blog . Check it out.  Two of her songs fill the wait period before rechecking BG quite well.

The main reason for trying out Animas was integration with Dexcom.  While it’s not perfect yet as it utilizes an older algorithm than the Dexcom receiver we have now, and there is no low-BG suspend, it’s a promising beginning.  Also- summer/waterproof.  Works for me right now.  And I’m excited there is an option for low or high sensitivity for the blockage alarm.  Any time I suspected a problem with insulin delivery from the Medtronic pump, customer service would ask I clamp the line, and we had to wait for it to build up to 5 units to test if occlusion alarms were working.  5 units!!  For a kid who often gets only 1 unit for meals, this threshold is useless.

I have a few Animas questions now and probably will have more by morning.  (Again, bad timing.)  I did end up giving him one small bolus for a snack before bed. I was disappointed to see a “calibrate now with this BG?” message pop up. Can this be disabled? Please, no extra CGM calibrations throughout the day.  I can bypass this just fine. But will the 5 year old or the people taking care of him bypass it?  So many buttons.

Ok, time for a nap. It’s going to be a long night.

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