Summer Music

This is the first week of my daughter’s summer music program.  She’ll be at our town’s high school 5 mornings a week, beginning to learn the clarinet.  The program is run by a couple of our town’s music teachers. Kids receive a daily group instrument lesson, sing in a chorus, and take a music theory class.  As they get older, they can also participate in band, jazz band, and a musical theater production. 

My daughter began participating in the program last summer.  She had started piano lessons during the school year, and was developing a real interest in music.  It seemed only logical to give her this opportunity to immerse herself in music for the first month of her summer.  She loved every minute of it, as I’m sure she will this year too.

Here’s the thing:  summer music doesn’t have a nurse, or anyone who acts as a nurse.  They probably have a stash of band-aids somewhere, but that’s where any interest in medicine ends.  So it was with a pit in my stomach that I made the decision to send my child with diabetes to this program last summer. 

The first day she went last year, I packed her up with a cell phone, meter, juice box, diabetes bracelet, and a note in her backpack with every contact number I could think of.  I walked her in the door, and spoke with the hall monitors.  I’d already made sure the director was aware and would tell her teachers.  I gave her a kiss, said goodbye, took a deep breath, said a prayer, and went home.  For two of the longest hours I’ve ever spent. 

The story has a happy ending.  When I returned, she was alive, upright, and happy.  The rest of the weeks went the same way. She checked her blood sugar as needed, and called me if it was off.  She called me more, however, because she’d forgotten things and wanted me to bring them to her. 

When she was diagnosed with diabetes at 13 months, my daughter was helpless.  She needed an educated adult with her 24 hours a day, 7 days a week.  It seemed for many years that this would always be so.  It is with relief, and pride, that I continue to watch her grow into a responsible child.  I realize that not all 9 year olds are capable of taking on this kind of responsibility, nor should they have to be.

The decision to send her last year was a difficult one.  There was certainly less of a safety net for the many diabetes “what-if’s” racing through my mind.  On the other hand, I knew I would be only a few blocks away.  I knew she took on these responsibilities well at friends’ houses.  I knew that an extreme diabetes emergency was extraordinarily unlikely.   Most importantly, I knew that she really wanted to live and breathe music for a couple of hours a day in July.  So the answer had to be “yes.”  

This year, the decision was easy.  Another hurdle has been crossed.  Now we'll see how things go with the clarinet! 

 

Retirement Gift

My daughter's school nurse is retiring this week.

Finding just the right way to thank her for four years of  lovingly yet professionally taking on all our diabetes issues, particularly in those first frightening weeks of Kindergarten, has been difficult.  Truly, anything we do will be inadequate. 

After extensive brainstorming, though, in addition to a gift certificate for a nice dinner out (which she SO deserves), we created this:

When asked her favorite memories of her beloved nurse, my daughter mentioned that she sometimes, especially around the holidays, takes the test strip container, shakes it, and sings 'Jingle Bells.'  Now she can continue to do so at home, while knowing she is sorely missed!

Early Warning System

Don’t judge me too quickly when I tell you I was relieved when my daughter came down with a minor ailment  last Tuesday.  I am, of course, sorry that she was not feeling her best, and grateful that her recovery was efficient.   Rest assured she received her fair share of hugs, tv shows, and cold drinks.

The problem was that her blood sugar was very high on Sunday and Monday.  We have our occasional outliers numbers-wise, but this was a lengthy and un-fixable stretch which made me begin to question all sorts of things.   After the first couple of corrections didn’t work, we had eliminated the possibility of bad carb counting and had checked the infusion site.  We looked for bubbles in the tubing and saw none.  Then we changed the site (which looked fine).  That didn’t work either, so I started a new bottle of insulin.  It had been hot, and I know insulin doesn’t love summer.  Nothing budged.  My bag of tricks was empty and I was wondering if somehow her basal rates needed to be doubled overnight when I heard these words:  “Mommy….I don’t feel well.”  And despite my best mommy instincts, I felt relief.

Word on the street is that many people with diabetes have this early warning system for illness.  Before the symptoms appear, the body is fighting something off and the blood sugar skyrockets.  For some, these highs continue throughout the illness.  This happens for my daughter with a serious illness, but for minor things like colds, the most glorious thing happens.  Once she’s come down with the illness, her blood sugar drops into her goal range and remains there in a bizarrely consistent fashion. 

Now if diabetes would just fine-tune this warning system, it would be much more helpful.  We need a more efficient way to differentiate these high numbers from those with other causes.  We could also use a heads-up on what the impending illness is so we can begin to react.  I could then conveniently pre-schedule pediatrician appointments, pick up a bottle of ginger ale, or start pushing vitamin c. 

Unfortunately, diabetes isn’t a terribly good listener, so I guess I’ll have to settle for those nice numbers we saw as my daughter recovered at the end of last week.

Teeth

Teeth

It seems like the tooth fairy has been visiting us frequently these days.  I’d somehow expected her visits to slow down by 3^rd grade, but there are more baby teeth in there than I thought.  Apparently she’ll need to save up a few more dollars for my daughter’s tooth pillow.

Teeth, as a rule, are problematic.  Getting her first set of teeth was certainly problematic for my daughter.  Our home was littered with teething rings and empty baby orajel tubes.  She had even less desire to eat than she usually did in those days.  She had a more unique reaction as well.  Her blood sugar seemed to rise every time a new tooth was coming in.

I asked the pediatrician and our diabetes team if I was imagining things.  It seemed there were few enough babies and toddlers with diabetes for there to be any definitive answer to my question. 

They did tell me, though, that I was probably right and that there were several factors which could be involved.  Inflammation can cause a rise in blood sugar.   So can growth hormones, which would likely kick up as teeth grow in.  Lastly, but never least, stress probably played a big role.  The pain was stressful, of course, and as she got older the weirdness of new teeth appearing in her mouth was also unsettling.

As far as I can tell, we still see spikes when new teeth come in, probably for the same reasons.  The added discomfort and stress of the old tooth falling out just exacerbates the problem.

As with many diabetes obstacles, here’s nothing to do but correct and adjust doses and move on to the next problem.  I’m guessing that when the braces go in a couple of years, we’re going to be in for another teeth-related diabetes adventure!

A Mystery (One of Many)

It’s been very (very) hot here this week.  On the evening of field day our town opened the pool, although it’s not typically open on weekdays until after school is out.  We happily arrived a few minutes after the gates opened, and after a stifling day on the field and in school, my daughter wasted little time getting in. 

I did have her stop to check her blood sugar prior to disconnecting her pump to get in the water.  It was in the high 200’s.  She’d run a bit high all day, probably partly due to the heat which tends to bump her up a bit, and was clearly rising. We corrected the number before disconnecting and she jumped in the pool with her friends, not to emerge for an hour and a half. 

I’ve been cautious about correcting in the late afternoon for the past couple of weeks since she’s tended to drop like a stone by 7 p.m.  We really should change our correction factor at that time, but I’ve lazily just skimmed a bit off of the suggested bolus and moved on.  On Wednesday, though, I gave the whole thing for two reasons.  She’d been high-ish all day and needed to start heading down, and she was disconnecting for at least an hour, so would miss that hour’s basal insulin.  I figured we’d be lucky if she came out below 200.

When she plugged back in, she was 106.  I was surprised but pleased.  I also figured she’d creep back up from the missing insulin.  She usually experiences a post-swimming high after a long disconnect.

Around 7, she was 80.  We covered all of dinner, still anticipating that her numbers would rise.  At 8:45, she appeared.  “I felt low and I’m 60.”  I tucked her back in after a juice and a hug.  She never got above 120 all night.

Why did this happen?  Maybe because she finally cooled off.  Maybe it was the giant iced tea she drank at the pool, which re-hydrated her.  Maybe the swimming made all that insulin on board work extra hard.  Maybe the field day exercise finally caught up with her.   Maybe they added insulin to the pool water.  Anybody’s guess is as good as mine.

There’s definitely science involved in diabetes management.  Then there’s the experiential learning where you learn what works and what doesn’t with your own body.  But after eight and a half years, I’m convinced that a huge part of it will forever remain a mystery.

Field Day

Every day requires a note to the nurse, and some days require a note to the teacher.  But I reserve the BIG paper for field day.  They will each get a full page this week. 

Dear Mrs. Teacher,

Although the class is not having morning snack today, please make sure my daughter maintains her regular schedule and goes to the nurse’s office by 10:15 to test and eat.  As a reminder, more exercise than usual can result in low blood sugar, so please encourage her to check if she’s showing any low blood sugar symptoms.  Please make sure she brings her “emergency bag” with her meter and juice box outside onto the field, and that she remembers she can use it if she feels “funny.”  If she is low outside, please make sure she drinks the juice box.  When she then goes inside to the nurse, please send someone with her.  For the PTA treat, please read the popsicle box and make sure they are the sugar-free ice pops with 4 carbs as planned.  If they are, she may eat one without testing.  If they are not, please send her to the nurse with the box.  Thank you!

Dear Mrs. Nurse,

Snack has 12 carbs.  If she’s under 130, please don’t cover the snack.  If she’s under 180, please cover the snack, but don’t add the bg.  Please remind her to drink lots of water since it will be so hot and her blood sugar will skyrocket if she gets dehydrated.  She may have one of the sugar-free ice pops without another visit to you.  If there are any additional treats, please give me a call.  Thanks.

What I didn’t add to either was this:

p.s.  I realize that you, Mrs. Teacher, have 26 kids to supervise and cheer for outside on a big field full of hundreds of running children.  I realize that you, Mrs. Nurse, will have a steady stream of field day injuries, asthma sufferers, and heat-stroke patients through your office today.  Please, however, keep one eye on my daughter to make sure she’s safe.  The other eye should be sufficient for the rest of the kids.

The Field Trip

Today was the 3^rd grade field trip.  They visited an outdoor living history program set up on a former golf course.  There were demonstrations about native American life, and about the natural history of our state. 

All parents were offered the opportunity to go on this trip with the class.  A year or two ago, I would have jumped at the chance, worried about how diabetes would impact my daughter’s day.   This time, I thought about it differently.  The school sent a nurse with the class, not just for my child but for allergy and asthma issues too.  My daughter is older, and more responsible than I often give her credit for.  Most importantly, she rarely gets to go places and have experiences without a parent by her side holding a bag full of diabetes gear.   I decided she should go without me, and she was excited to do so.

If I’d thought about the note I’d have to send with her and the other preparations involved, I might have decided it was easier to spend the day in an open field in 95 degree heat.  My usual note to the nurse is 2 sentences describing how many carbs are in snack and lunch.  Here, there were more concerns, and since it wasn’t the regular nurse, I wanted to make sure I was clear.  Two pages later, the nurse knew that my daughter needed to test before they started walking, before lunch, and when they got back on the bus.  She needed to carry extra juice boxes and glucose tabs because her blood sugar often drops with a lot of walking.  She should be encouraged   to stop and check if she felt low and reassured she wouldn’t miss out on anything.  I sent parameters for juice vs. glucose tabs.  I asked that any bg under 200 not be corrected (due to the dropping while walking issue).    

The afternoon before the trip was spent e-mailing the teacher about what time lunch would be, and whether the nurse could please sit near my daughter on the bus.  But could she please not sit with her, so my daughter could have the fun of sitting with her friends?  Then I packed her little bag with a spare meter, juice and glucose tabs, along with her hat, sunglasses and disposable camera.  I managed to leave room for lunch, 2 snacks and 2 water bottles too.

I’m fairly certain I spent more time preparing for this field trip than I have for any trip we’ve taken as a family except the one overseas.  But as with all things diabetes these days, independence is the ultimate goal and this was a happy step for both of us.