YIMBY


We're just a couple of weeks away from the start of high school, which I don't want to think about. So I'm reminiscing about preschool:

We chose my daughter's preschool because it was a high quality one, recommended by neighbors.  We liked that the day was weighted heavily towards finger painting, music and play but included just enough minutes of drawing letters and thinking about numbers to prepare the kids for kindergarten.  We chose it because the teachers we met on our visits were kind and looked at their students as unique individuals. We chose it because the director didn't freak out when I told her my child had diabetes. We chose it because when my daughter visited I had a terrible time getting her to leave, despite promising she'd be coming back regularly starting the next week. 

The school had one more selling point, though, especially valuable to a mom of a kid with diabetes who had never been left with anyone but grandma.  This preschool (and the church in which it was housed) was in our back yard.  There are lots of things we don't want in our back yard, but for preschool, we were definitely in the YIMBY (yes in my back yard) camp. We walked out the back door, through the yard and entered the door of school. I was quite literally a stone's throw away should a need arise.  I could (in my imagination at least) mix the glucagon while running through the yard, prepared to stab my daughter's leg as I ran into the building.  I could arrive at a moment's notice bearing vats of water, prepared to calculate a bolus to correct a high.  Instead, this convenience turned out to be mostly for my own peace of mind: I got called to the school twice because she wanted me to be with her while she sat out low blood sugars.  Otherwise she was fine. 

I probably would have chosen this preschool even if it had been across town, but I'm glad I didn't have to.  It was scary then to put her into the care of strangers for 3 hours a day. It was scary for her to have to ask strangers for help if she didn't feel right. It was scary to imagine what could happen if nobody (including her) noticed she was low and she got to a point where she needed urgent help.  It was comforting to all of us (including the school staff) to know I was around if needed.  And it was comforting to me as I sent her off to kindergarten, to know how little I'd been needed after all.

What's That?


Little kid (pointing at Dexcom receiver on my daughter's belly): What's that?

My Kid: I wear it to keep me healthy!

(Little kid swims away/ continues eating popsicle/ asks about something completely different)

This conversation has repeated itself several times this summer at our town pool.  These are usually kids who know my daughter's friends (neighbors, kids from camps they've volunteered at, relatives). These kids enjoy the opportunity to hang out with the 'big kids' for a while in the water or on the volleyball court. My daughter chose her stock answer at the beginning of the summer and so far it's worked every time.

These conversations are in significant contrast to those she's had this summer with new peer and adult acquaintances.  These people want (or the case of the band director, for example, need) more complete answers to what the devices she wears and uses are, and how they work.

Through middle school, her social circle remained fairly static.  As she starts to spend more time with the band kids, and with the people her middle school friends are collecting as they start new activities and endeavors, the explaining has begun again and the conversations have become longer.  Recently examples include, 'why do you still have to poke your finger if you wear the dexcom?' and my daughter's personal favorite, 'what's your blood sugar usually?'  These are a little harder to answer but they're thoughtful questions. 

I'm glad her friends are interested in and concerned about her diabetes.  High school means she'll be spending lots more time with her friends.  The more they know, the better.

Though the conversation is certainly simpler with a 4 year old.


Marching Band


Our meeting a couple of weeks ago with the new school nurse also included the band director. Marching band is a serious endeavor in our district. There have been weekly 3 hour rehearsals since June. Band camp week in August consists of twelve hour days at the high school. Our fall weekends are spoken for.  There will be weeks when my daughter spends more time with the band and its staff than she does with us, her beloved (and diabetes-familiar) family.

She's the first kid with diabetes to be in the band, so this is new territory. Both the director and assistant director agreed to be glucagon trained, which is great.  More important to me, though, was to teach and then strategize so that they will never have to use that training.  So we talked about diabetes.  We talked about how steady exercise (like walking and presumably marching) can lead to low blood sugar. We talked about the importance of treating a low blood sugar as soon as it's noticed.  We talked about the importance of checking blood sugar obsessively on days of important events (like band competitions) so that my daughter can use every tool at hand to aim for a in-range number at show-time.  We talked about the importance of keeping diabetes supplies accessible at all times.

The last time we had to explain and discuss diabetes in this kind of detail was at our initial 504 plan meeting at the middle school . The goal of both meetings was, of course, to get the staff to agree to allow my daughter to do what she needed to do to take care of her diabetes.  The tactic we used both time was conversation and education.  More effective than making a list of demands, I think, is to talk about life with diabetes: what a low blood sugar feels like, how it's treated, how we use the tools we have at hand to prevent diabetes emergencies, how good my kid is at taking care of her diabetes with a minimum of disruption, and how much bigger a disruption it would be if an oncoming low turned into a medical emergency.  This information, presented with a healthy dose of 'we've been doing this forever, and we know what we're doing,' seems to slowly but effectively shuffle people's preconceptions about how things should be done and lead to building consensus on a mutually agreeable plan.

The conversation with the band director led to a game plan, to be fine-tuned as events start to unfold.  She will have her meter kit on the sidelines of all rehearsals.  While the director is strict about nobody leaving the lines for any reason during practice, my daughter has permission to slip away to check if the Dexcom alarms or she's feeling low. The band director will carry glucagon and a spare meter in the first aid bag which accompanies him onto the field. At performances she will check her blood sugar during the time just before they enter the field and then hand her kit to the director or a parent volunteer as they line up. The uniform jacket has a pocket in which she can keep a roll of glucose tabs to use in an on-field emergency. The lines of communication remain open and if we have any concerns, we'll bring them up. Ditto for the band director. We left feeling comfortable with the plan.

Next up, how wear the pump and dexcom with the uniform, how to survive a week of band camp in the August sun and how to balance the busy fall band season with the first semester of freshman year of high school...

A Little Fear Can Be A Good Thing


I usually drop my daughter at her summer music program after helping make her lunch and gather her belongings for the day.

Last Friday I had to leave the house early and so she chose to walk the few blocks to the program rather than arriving half an hour before her first class and having to wait around.   No big deal, I thought, and a great opportunity to be independent.  When I left, she was eating breakfast, and her lunch was made.  She had half an hour until she had to leave, plenty of time to get her stuff together and get out of the house. 

She texted me before 9 to let me know she'd arrived at her destination and we continued on with our busy days.

Then at 11, my phone buzzed.  Surreptitiously taking it out of my pocket for a glance, I saw this:

'I'm such an idiot I don't have the meter.'

Meanwhile the Dexcom sensor had breathed its last at 9 the night before and we'd decided a free day would be okay before replacing it.

The next text read:  'I felt low so I drank my one juice and now I'm eating and I'm gonna do like half my lunch and then I'm going to the store to buy a coke or something in case I'm low again.'

Fifteen minutes away and responsible for a group of 7 children until 12:15, and then expected to stay where I was until at least 1:30, I texted back,

'Sounds good.'

As it tuned out, she did absolutely the right thing with the lack of tools at hand.  The low or low-ish she treated was likely real.  When she bolused for lunch she factored in the amount of dancing she expected to do during the show rehearsal.  As the afternoon wore on she thought often about how she was feeling. She realized, should she need it, that in addition to the soda she had purchased she had access to candy usually awarded as prizes for the daily trivia contest. When she got home her blood sugar was 79. 

With some significant inconvenience to myself and others I could have left what I was doing to get a meter to her.  Instead I let her wing it until her program was over for the day.  Was it the safest plan?  No.  If I had it to do over again would I bail her out?  I don't know. But when she got home, she said this:

'That was scary being without the meter.  I don't think I'll forget it again.' 

Sometimes a little fear can teach a very important lesson.



Meter Bag Clean-Out


 

This is what a pile of 237 used test strips looks like.
At least I know she checks her blood sugar when she's out!

 

Next...


My daughter is going to high school next year (eek).  So among many anxiety-inducing steps we met the new nurse.  We also met the old nurse, who is retiring but orienting the new nurse.

It was a familiar routine.  By my count, these were the 8th and 9th school nurses we've met in as many years. Not including, of course, countless substitutes. I'm incredibly grateful that while we've definitely clicked more with some nurses than others I've always left these meetings feeling comfortable that my daughter would be in good hands.  These people have done everything we've needed them to do to support my daughter's care in the nurse's office. They have also been proactive in communicating and planning for my daughter's diabetes needs with staff  throughout the school and at school-based activities. Taking a step backwards, I'm very grateful that we've always had a full-time school nurse at all, since so many schools do not.

The conversation about the school year gets shorter every time, as my daughter takes on more and more of her own care.  We were reassured that teachers would be informed of my daughter's diabetes, alerted to symptoms of low blood sugar, and even given a roll of glucose tabs per classroom which, as far as I know, is a step beyond what took place in the middle school.  She'll continue to go to the nurse when she is low, because it's important for her to be somewhere safe and because it's also important for her teachers to know she's not absorbing the material being presented or that she's unable to adequately complete the classwork, quiz or test of the day.  She'll also visit if she's high enough that she feels unwell or needs to troubleshoot the cause of the high blood sugar.  Which goes hand in hand with visits for pump alarms, and emergency site change needs.  In August we'll deliver our bag of strips, glucose tabs, juice boxes, a back-up meter and more so that the nurse's office can also serve as a source of back-up supplies.

The biggest topic of conversation about the school day involved lunch.  My daughter decided that she'd rather handle lunch on her own and only come to the nurse's at lunchtime if there's an issue (she's low, runs out of strips, can't figure out the carbs). She has handled lunch by herself at her summer music program for years, and does her own mealtime routine at home without help.  The other motive for this request was a desire to maximize her time. Our high school's schedule is designed to accommodate club meetings and extra teacher help during lunch periods, to allow a little study or library time, or to provide a solid break in the day for kids who participate in both before and afterschool activities.  With a hefty fall extracurricular schedule, every spare moment during the school day will be valuable. Taking care of lunch independently was, apparently, how other kids have handled diabetes at our high school in the past, so this plan was not only allowed but encouraged. The philosophy (which is refreshingly in tune with the day-to-day realities of living with T1D) is that gaining self-sufficiency is an overall high school goal and that diabetes self-sufficiency is at least as important as bringing the right materials to class. Support and help are available if she needs it but she does not have to come to the nurse daily.

Woven into these conversations were threads of humor, helpfulness, and welcome.  My daughter was reassured that she is welcome in the health office at any time. It was clear that if she changes her mind on any of the plans we made that nothing is written in stone.  While a nurse with enough knowledge to use glucagon if needed and to educate the staff about diabetes is important, what's more important to us is that the nurse is someone my daughter feels comfortable asking for help when she needs it and someone who is good company to sit with while she comes up from a low. 

We're grateful to have one less thing to worry about in the fall.



Pump Wearing


The biggest hurdle in making the decision to switch from injections to a pump when my daughter was 2 was figuring out how she would wear a pump on her tiny frame.  For several years she wore an Animas brand double zippered pump pack with a luggage lock on it to prevent her curious little fingers (and those of other children on the playground) from pushing a disastrous pattern of buttons.  Once she was 4 or 5 and we felt comfortable with a Velcro closure, she was fortunate enough to have a great-grandmother who made a few packs for her out of fun fabrics.  These days she either uses the clip provided with her pump to attach it to her waistband or she tucks it into her pocket.

Except at night with pajamas, or under a dress. We've continued to try different packs for these scenarios but we're still seeking the best solution. So while I've never before accepted anything to write about here, when Julie from Pumpwear contacted me about trying out a couple of their products I said 'yes!'  She sent us two things to try. 

The first is a familiar-looking double zippered pump pack with an elastic adjustable waist band and a plastic buckle. 



There are countless fabric choices, of which we were sent a cute, subtle pastel polka-dotted one. The feature we like more than we thought we would is the button hole on the side closest to my daughter's body through which to feed the tubing.
 

It allows the tubing to be contained; a real plus for an active sleeper, and generally safer for anyone who comes into close quarters with doorknobs and drawer handles. Another feature of this pack is the expandable pouch.  We were dubious about this at first because her current bedtime pack is so roomy that the pump slides around inside it, making it less comfortable to wear and harder to access when needed. This pocket, though,  appears small and remains small if just the pump is in it, keeping any sliding to an extreme minimum. It could expand to hold a Dexcom receiver instead, or any brand of pump.  The waist band is both elastic and adjustable on two sides, which makes it able to fit a wide range of sizes and yet also fit very precisely in the end because of the elastic.  That's a feature which was sorely missing from packs we tried in the baby and toddler years.  This particular pack lacks a clear window, a feature we look for to allow quick access to the pump's buttons in the middle of the night, but the company does make several versions with windows.  My daughter isn't a fan of the double zippers because they're noisy when she walks (I kind of like a teenager you can hear coming myself) but she really likes the soft fabric and finds this pack comfortable to wear.

The second product we tried is a waist band.
 

This one is made of a silky material (think slips and other feminine undergarments) but which is also stretchy so that it fits close to the body.  It's got an elastic waist, sized to fit based on waist measurement. The pump slips into a large pocket which has a Velcro closure and then rests slightly below the waist.
 

We're particularly thankful that this arrived in time for 8th grade graduation. The dress/pump combo is getting trickier.  We have a tiny pump pack, a relic from my daughter's preschool years, which fits very snugly at the small of her back.  It's worked with dancewear and countless dresses over many years. But as she's gotten older, dresses have become more fitted, and with the 8th-grade graduation dress there was a noticeable bulge where the pack sat. Also, the felt-like material of the old pack did not allow the dress to slide over it, creating weird creases with movement.  The pumpwear band, however, worked perfectly with this dress, with the pump sitting below the waistline under the fuller skirt, and the silky fabric allowing the dress to move naturally.  She finds the waist band very comfortable.  It's the first pack she's tried with no Velcro or buckle.  At first, because it was so unconstricting, she felt like it might just slip off, but once it didn't, she found it very enjoyable to have a freer feeling midsection under her dress. And the lack of a front closure made it even more inconspicuous under clothing.  This one is also available with more than one pocket, to accommodate, for example, both pump and cgm.  It's more of a 'special occasion' item, since she doesn't find it comfortable under pajama pants, and the pump hangs low enough that it wouldn't work under regular pants or shorts, but we love the alternative under-dress/under-skirt option.

We have fashion challenges coming at us thick and fast in the next few years:  marching band uniforms, more semi-formal dresses, dress-pants and possibly suits for academic events and interviews, and of course the prom dress.  Among pumpwear's many products geared to older teens and adults are pump garters, underwear with pockets and, of course, a multitude of waist and clip options.  I'm very thankful to have been given the opportunity to check out these two choices and we'll definitely be back for solutions to future fashion challenges!

Disclosure:  These two products were sent to me free of charge in exchange for my writing about them here on my blog.  The opinions expressed here, both mine and my daughter's, are our own.