Tuesday, February 10, 2015

Caffeine and a little sugar

Now back to our regularly scheduled type 1 posts.

Sugar Bear has been dealing with wonky numbers.  We've had more numbers above 300 in the past week than we did all last year.  We're swimming each week, we've made some nutrition changes, and still we gave numerous shots at midnight and 3am.  Endo had us change just the long lasting lantus dosage three days ago and that has brought him down a bit.  We actually had some numbers finally in range and then, of course, instead of a shot at 3am it was a juice box.  Unfortunately in my slumber stupor I spilled some trying to get him to drink.  Had to change his shirt and of course woke him up more than normal.  I don't know which I despise more, highs or lows at 3am. Really what I despise the most is that my son has diabetes.  I'd like to just sleep through it.  I can't.  It's not an option.  So I run on caffeine and interrupted sleep.

I'm reading a fascinating book called Bitter Sweet by Chris Feudtner.  It talks about Diabetes, Insulin, and the Transformation of Illness.  Just a little light reading.  One little quote from the book:  "Yet the diabetic situation after insulin was rather more complicated- a 'terrible beauty' had been born."  Yup, that about says it.  I never thought that in my parenting I would feel my heart swell with pride because my child gave himself his own shot or that the accelerated maturity of my Sugar Bear would cause me to want to bawl my eyes out.  It is this strange dichotomy.  No wonder Brett Michaels sings about every rose has it's thorn.  Trying to find that balance between not hovering but still battling diabetes is tough.  We look to not let it overtake but giving it the respect it demands.  It's not easy no matter what it looks like from the outside.  Drago told me this morning on his way to school that his buddy (who has type 1) missed yesterday because out of nowhere his blood glucose was over 400.  He told Drago that he feels horrible when he is in the 200s so one can imagine how poorly he must of felt in the 400s.  Drago has been noticibly showing more interest in all things type 1.  He even got into an argument at school with a kid who insisted it was caused by sugar. Drago also randomly got up at 5am because he was worried about his brother.  He woke me to find out what his last reading was.  It was one of the nights that we were giving shots.   Sugar Bear's disease takes a toll on the whole family.    It truly is a family affair.

We are looking at our upcoming walk and trying to figure out more fundraising.  Sugar Bear has redesigned the t-shirts and renamed the team.  Since he was itty bitty he has always loved monkeys.  The new walk team name is Team Sugar Monkeys.  He is so sweet. We would love to have you participate; you can even do it virtually and donations are always welcome.  I have not changed our name yet at the JDRF walk site.  We are still listed as Team Sugar Bear.  Btw, the name Sugar Bear has been a nickname I've called him since he was a baby.  And it is so appropriate in so many ways now.

My echocardiogram came back fine.  That was one bit of good news in the last week.

Stay tuned for more updates.....to be continued, always.  Until then I will continue checking and drinking coffee.

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