What a Difference Two Weeks Can Make

The second day of our Diabetes Survival Crash Course (not really what it's called but it best describes the content and the necessity of it being taught tout de suite), we were joined by another mom and her 11-year-old daughter (new onset diagnosed the same week as us).  Unlike us, however, this mom also has a teenage daughter (big sister of the little girl) who has been Type 1 since age 3. My first thought was that my LilBird would have another child with whom she could connect, and this one happened to resemble her own big sister and she was very cooperative with her breakfast finger-stick and injection!  My second thought was here sat a mom who knew exactly what it felt like to be in my shoes!  Being the veteran of parents of diabetic children in the room, what a relief it was for me to see she was teary-eyed, too, not only for her own daughter's new onset but also for us.  Their presence alone was reassuring to us in so many ways.  I owe a huge bit of gratitude to this mom for the tips she shared with us about how to ease the injection routine for a small child.  That day's injections weren't a whole lot easier than the first, but measurably so nonetheless.

Our second day we learned about the highs and lows of glucose levels, how to prevent, how to treat, when it's an emergency. Lows are pretty darned frightening to imagine.  Of course, we were on the extreme end of paranoia after sitting through that all morning.  LilBird zonked out in the car quickly afterward (which is normal for her), but sitting in traffic, we began to worry that she was too pale, too sleepy, not responsive enough.  I climbed into the back with her try to test her glucose level.  Not only did she wake up, but she was (pardon me) pissed!  She wouldn't give up a finger to let me check, so I had her take a swig of Dad's Mt. Dew.  A sip was all she needed to regain her color and diminish her anger at me for trying to prick her finger while she napped.

I dropped off the stack of prescriptions at the pharmacy, and when I returned to pick them up, I was disheartened to learn that they'd had to order our Glucagon kits because they didn't have any. I knew it would just be the next day, but ... as if I didn't already have enough to worry about. Of course, Wednesday morning, she was low (45) - pale, but not unresponsive by any means.  Having just learned about it the day before, you'd think I would know exactly what to do.  In the moment, though, all I could remember to do was give her a 15-gram-carb snack. I did that, and phoned the clinic.  Until yesterday, I didn't even remember who I talked to that day.  It had been the nurse who'd given us Day Two's lessons.  She calmed me and told me that, in addition to having just treated the low with a snack, I needed to decrease her bolus dose by one. I really felt like that was double-treating a single issue, and I mentioned that feeling, but she reiterated that this was the right thing to do. She's the nurse and diabetic educator, not me, so I did it.  We were chasing high levels the rest of the day. Turns out (after discussing this with the nurse practitioner), I should have gone with my instinct.  The "information" all says what this nurse told me, however, the double is for SYMPTOMATIC lows. Sure, Bird's level was low, but a) she's only five so "symptomatic" is really hard to tell (and the nurse did fail to ask and/or mention that part on the phone), and b) she was having a much later wake & breakfast than either of the prior two days and that threw her off some.

I certainly don't mean to knock this nurse/educator because she was very friendly to us (until she was called out yesterday morning about this double-treatment, which we think the nurse practitioner should have handled privately instead of in the exam room, but their office politics is not my problem) and she taught us a ton of valuable information. However, it's very obvious to us now, with two weeks under our belt, she has no practical knowledge of parenting a diabetic child.

The first week, each day got a little bit easier (in large thanks to that other mom's tips).  LilBird's Webkinz bunny, Rosie, had accompanied her to our classes, so she was designated Bird's diabetic baby.  Bird gave Rosie injections after her own injections were done.  After about 4 days, though, Bird began to notice that Rosie started smelling like insulin - which is not a pleasant odor - so she opted for just jabbing her with the needle and pretending to give insulin.  At first, she really would stab her bunny with the pen pretty viciously.  It was heartbreaking to watch her and wonder whether it really felt like that to her or if she was just getting her frustration out on her bunny.  She's gotten much more tender now, and she forgets to do it about half the time.  Also at the other mom's suggestion, I made a reward chart.  We cut a deal with LilBird that she'd earn 5 cents for each shot she was cooperative with the bonus being if she got all 4 nickels in a day, she'd upgrade to a quarter for that day.  All to spend in a trip to the store.  That system didn't work alone - she needed a tangible and immediate reward.  I took her to the candy store where she picked out a couple of kinds of sugar-free, 1-gram-carb hard candies.  Just like with potty-training, this child loves to negotiate and candy bribes work!

We survived the Thanksgiving holiday with good levels.  In the interim, her insulin dose has been adjusted a bit, her carb ratio for lunch was increased from 1:20 to 1:18 with good result, and after the third day, she'd been on 4 units of Lantus (the long-acting/24-hour insulin she gets at bedtime), down from the original 6 units.  After the second week, I was pretty sure her breakfast bolus dose would be adjusted to match the lunchtime change, just based on how high her lunch levels had remained.

Fast-forward two weeks to our next appointment at the clinic.  She's gained just over 4 pounds in two weeks!! This is the first weight she's gained in two years!  Her doses were adjusted again - the bolus as I'd anticipated, but also the Lantus was decreased to 3 units.  After our appointment (during which LilBird was told by the nurse-practitioner the things she has to do - let Daddy do some of the shots and rotate injection sites), she did let him "start practicing".  She's actually excited to start using the fancy, new pen we got which allows us to give insulin in half-units. We'll see what the changes bring.

For the most part, life is getting back to normal slowly but much more quickly than I'd dreamed it would two weeks ago.  I can (for the most part) discuss her condition without crying now.  It's funny how little kids process things. She wants to keep the details of her injections and finger sticks private - she has so far only allowed Grandma & Grandpa to watch, and I think that was only because she expects them to be able to do it so she can stay at their house on occasion like she's accustomed to doing. She has prompted some heart-wrenching conversations with me.  "Mama, how long am I going to have diabetes?" Do you know how hard it is to tell your baby that it's forever? She threw herself back on the bed, sighed deeply, and simply said, "I just wish I could have it for one day!" She's asked specifically about young cousins and her friends and other close family members - desperately seeking someone who can relate. We have nobody. I didn't expect it quite so soon, but in one of those moments when it was obvious she had been thinking about it because it seemed so random, she asked me, "Mama, how did I get diabetes anyway? Did you and Daddy give it me?"  I explained that she was born with it, but that we just didn't know until now.  I turned the last bit back on her and asked, "Why would we do that?" She didn't have an answer, so I guess we're tied on that one.  I know we'll revisit that later, likely with some anger on her part and a million tears on mine over that very question between now and then.

The dietitian was advising us that "It does come easier if you look at all the things you have to do now as just part of life, like brushing your teeth, you have to remember the carb-counting, the injections.  If you see it that way instead of looking at it like, 'it's a chronic illness,' it is easier."  Chronic illness.  Easier to deal with the routines, yes.  Chronic - forever - I don't think that part will ever get easier for me.