The appointment was at Seattle Children’s Hospital.   I’m reminded of a visit to Toronto years ago when one of the first sites that caught my eye was the sign for The Hospital for Sick Children.   Children were just a vague idea for me back then- just some light, slightly nostalgic playground noise in the background, like birds singing- but still, I felt an OOOOF to the gut reading that sign.   It’s tough now that I have a child of my own to go to a Children’s Hospital and see actual sick kids.  I count myself among the lucky for having a healthy, brilliant, wild-ass boy.  Thank you, thank you, thank you.

Look at this trendy kid.  Everyone with  their Chicken and Waffles.  At least he’s no longer demanding just a little bit of seared pork belly to top his mac and cheese. 

No need to stress on the carb count either as we hit this up before running around a city park for a few hours.   Exercise usually drops his blood sugar pretty quickly.

His godfathers took him out on an adventure a few days ago, and it was like he didn’t even have diabetes.  They ran around like crazy and ate small (uncovered) snacks all day, and he hovered around 90.  All day!

Well, for me, twice makes a pattern, and twice now Ben has had a day of lows coinciding with a new molar peeking through his gums.   Maybe it has to do with some physiological changes in his body in reaction to pain.  I don’t know.  It just IS.   And recently he was about as excited as a kid on Christmas (for those old enough to get Christmas) because his father was coming for a visit.  He wouldn’t let his babysitter take him out for an adventure the day his dad was scheduled to arrive because “my dadda might come.”  Awww….   So he waited in his house and had lows ALL DAY.  I’ve heard of people reacting to anxiety or stress with high blood sugars.   On some diabetes forum I came across, someone called it the Scary Clown Effect.   Has anyone experienced these other happy, excited lows?

So long, lows.  Tonight Ben ate more meat than he has in his life.  Usually when offered meat- especially beef- he gags or chokes and acts like I’m poisoning him.   So I’ve never really figured out how to bolus for protein.   Most of the time I wouldn’t think of it, but when he puts back almost half a pound of meat….   I’ve read that you should bolus for up to 50 or 60% of the g of protein.  Extended bolus.   How long?  3 hours?  6?  I gave him only a fraction of the insulin suggested by my reading, so I’m guessing I will be up quite a bit tonight correcting and then checking to make sure I didn’t over-correct.   Reason #162 not to eat meat. 

Sometimes the Toddler and the Diabetes join forces to create some super-power sleep-killer.  It’s seems like the behavioral toddler bedtime issues happen every other night lately.  And on their off night… Diabetes picks up the slack to extend my night. 

Ben (now 2 1/2) has been talking a long time.  And manipulating for almost as long.  Oh how I miss the days of  BALL.   AAAAPPPPLLLLE.   Now I get the usual bedtime stalling tactics:  I’m hungry, I need water, I have to go potty….   It’s easy to ignore the first two, and after a few times of letting him get out of bed to dribble a few drops of pee into his potty, I’ve been ignoring the third.  He tried a new one out on my the other night.  “Check me.”   What????   Why that little——-   Of course I checked him.  Right in range.  Bugger.    I hear about people teaching their babies sign language, and I think, why, WHY???   In no time at all, they will be voicing every opinion and demand.  

Sandwiched in between two such nights was a night of stubborn highs after dinner leading to a site change and a bolus and another bolus after he’d gone to sleep.   I waited up an hour to make sure that last bolus was bringing him down and then had to set an alarm for a few hours later to make sure that the bolus didn’t bring him too far down.   Ahh life.  The worst part is I know I will look back on this as the good ol’ days- the days of me being in control.   Diabetes in the toddler is a huge pain in the ass, but I know we parents of the little ones can rest easy (once we get to bed!!!) knowing that we are calling the (right) shots.  I can’t even imagine the teenage years.  Hats off to those parents. 

Every now and then someone mentions this book to me- Go the F**k to Sleep.  I looked it up on Amazon (and what in the hell is going on at Amazon, btw?  These reviews are a little too involved for my believing.  Amazon must be paying some good writers.  Well I don’t care. I’ll still use them.  I have a 2-year-old.  I don’t get out much.) and supposedly it’s a funny little bedtime story for us, the parents.   I’m too tired to think it’s funny.   I used to have a sense of humor. 

The day before I was supposed to start work (for the first time since Ben’s diagnosis) I gave up on his daycare.   The daycare administration and I had been going back and forth on what forms and plans and whatnot they needed to accept Ben into their care.   I started these negotiations with such high hopes.  I was putting a lot of thought into how I wanted to present the information on diabetes management and into the forms I thought would be helpful to guide his care providers through the day.  In the meeting with the daycare admin folks and a public health nurse and a nutritionist, I quickly realized no one was interested in learning the basic ideas.   They wanted to be told IF THIS, THEN THAT.  And I had to be specific.  Write down 2 glucose tabs.  Ok, well isn’t anyone interested in what those tabs are?  What else does the trick?  Why are Sweet-tarts or Nerds a good choice but chocolate not?  That’s just one example.  I realize the utility of having Very Clear instructions.  But what happens when a situation arises that is outside of what we had planned?  Not a single person on staff would have the slightest clue as to how to proceed. 

I am truly sympathetic to care providers and teachers.  Especially teachers.   They have classes of 30+ kids sometimes.  So one student is diabetic.  Add it to the list.  Another student has a life-threatening allergy.  Five students didn’t eat breakfast that day.  Or any day.  Another student is being abused.   All this… on top of trying to actually teach.   Ben will have to be more independent come time for school.  But now?  At 2?  I need to know there is someone who is interested in learning what things raise a blood sugar, what lowers it…. 

A daycare or preschool bustling with little buddies for Ben will have to wait.  I’ve found a caring woman who’s a quick study in diabetes to watch him.  She calls or texts me with questions and says how she thinks she should proceed.  Great questions, insightful answers.   She should be fully trained and independent by the time she gets the job she’s been waiting for and moves on.  Guess I should get back to that daycare and work on my forms.

In other news, it was a BEAUTIFUL day in Seattle, as you can see in the picture above.  I picked some random park to take Ben to, and that was it.  I kept thinking, wow, how is it that I get to live here?   And after a failed attempt at a nap, I took that spoiled baby to another park, like a slides and swing kind of park near our house.   A woman there noticed Ben’s little fanny pack and asked if there was an insulin pump in there.  Turns out her son was wearing one too.   It’s hard to describe that feeling.  Kind of like traveling in a foreign country and hearing your native language being spoken….

In the next few days I will be giving Ben’s new daycare providers a crash course in Diabetes Management 101.  I am sympathetic to their plight.  They are going to be handed this kid who comes with a long list of Do’s and Don’ts and short scary list of consequences.   It’s almost surreal looking back at pictures of the first few weeks after his diagnosis.  You can’t tell by looking at him how strung out I was.   It seemed everything I learned was the hard way.  It’s almost funny now, but I remember looking at his meter a few days after being discharged from the hospital, and it read, “HI.”   Hmm…  Now what could that mean?  Was my meter broken?  That’s not a number.   I didn’t have time to read through the entire user guide, so I called the help line.  The person on the other end listened to my question and said, “O.K., that means the blood sugar is too high to be read, and when we hang up, I want you to go straight the hospital.  But first I have a few questions.  Can you tell me the lot number–”    Yeah right. I hung up on him and immediately contacted the endocrinologist on call.  (I was defeated.  We had just gotten out of the hospital.  We couldn’t go back, right??)  I got the first of many lines I came to know very well.  “Calm down.  Give insulin. Recheck in an hour.”  Same things for lows.  Calm down. Give a fast-acting sugar. Recheck in 15 minutes.  But to me there seemed variations on lows.  What if he were low, and I gave him sugar, and his blood sugar came up, but I wanted to give him lunch right away?  Why would I give him insulin right then for lunch if that same insulin just made my heart stop a second?  Well, you get to start over.  Blood sugar comes up.  Move on.  Fresh slate.   Oh, and I learned that 15 minutes means 15 minutes.  Especially with an 11 month old baby sucking juice out of a bottle to treat a low.  Now that Ben is older and can munch glucose tabs or candy, he seems to pop up quicker, but back then, I’d try to sneak in a check early.  I’d check him maybe 12 minutes after giving juice to correct a low.  No change.  I’d panic and hardly breathe for another 3 minutes.  Up he went.  All was fine. 

To add a layer of complexity, I feel like Ben’s  just gone through some changes, and his pump settings need to be tweaked to reflect those.  I just downloaded his meter (Thanks, Abbott, for this handy USB data cable to download my Freestyle Lite meter!), and I saw some less than ideal graphs.  Great.  Timing gets me again. 

Ah, he’ll be fine.  This kid can handle anything.  

Right???