Why All the Fuss About Diabetes Camp?

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The first time I learned about diabetes camp – there is such a thing? – was right after our daughter was diagnosed.  Hannah was 8 years old, and we were at our first appointment with the Certified Diabetes Educator aka The Angel.  After reviewing everything that we learned in the hospital (“Wait, we have to carry this red glucagon thing with us all the time?”), The Angel gave us a postcard showing kids canoeing, ziplining and all having the best time ever, ALL WITH DIABETES.  Latching onto this possibly positive aspect of a life-threatening disease, we promised Hannah she could go to Camp Colorado, which happens to be practically in our backyard.  If you are not familiar with one of the nationwide American Diabetes Association camps, do your kiddo a favor and give it some thoughtful consideration.

First, know that these camps are POPULAR.  I know now that registration for camp in July opens up at the end of March and mark my calendar accordingly.  We actually missed the first sign up that first year Hannah was diagnosed and she never made it off the waiting list.  Now I know …. and she reminds me as well.

Second, there is a serious amount of online paperwork you will have to fill out.  These people take the fact that they are caring for your child very seriously, and you’ll need doctors’ information, A1C results, permission from a CDE or endocrinologist, pump serial numbers, type of insulin …. the list goes on.  The neat thing is that you can set up an online account and a lot of information is saved year to year.  When it comes down to it, you want the camp staff to know everything about your kid.

Third, diabetes camp is affordable.  Although the actual cost per camper is very expensive – due to having physicians and nurses on staff – a lot of the cost is underwritten by fabulous donors and sponsors so that the cost to you is in line with a typical week at camp.

Fourth, this is one of the few times that you as a parent can take a breather from diabetes.  Not only can you voice any questions you have during a conference call ahead of time, but every minute of your child’s day at camp is monitored, from the line up of blood sugar checks before meals, to the nightly Juice Fairy visits, to the adjustments in insulin to compensate for the amount of activity they’re doing.  And when you pick up your camper, one of their counselors will review their blood sugar log with you.

Fifth, this is an amazing learning experience for your child.  Do you long for the times before the diabetes diagnoses when your son or daughter was like everyone else?  At camp, they are like everyone else.  Everyone checks their blood sugar.  Everyone has lows and highs.  Everyone gets a shot or a pump bolus.  Many kids have to eat gluten-free.  And the camaraderie encourages kids to try a new injection site, or to wear their CGM.

And finally, if you have a long drive home, prepare for non-stop chatter about how much fun your child had, and about terrific counselors, and making new friends, and things like the Blob and the Vomitron.  And about next year.

 

We Told Her She Could Do Anything, or What Have We Got Ourselves Into?

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My daughter was 8 when she was diagnosed with type 1 diabetes.  One of the glaring signs that something was wrong with her – besides the excessive drinking – was that she looked so fragile.  Hannah had been riding horses for 4 years, grooming them, putting on their tack, jumping them over rails, handling temperamental ponies …. and all of a sudden I was worried she was going to fall off.  As soon as we had the diagnoses and started the intense learning process of caring for a child with T1D, we reassured her, “You can still do anything!  Well, you can’t be a commercial truck driver or serve in the military, but you can still ride horses!”

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Boarding a horse is so expensive, we ended up moving to “the country” so we could support her passion.  And I had to learn how to hook up a trailer, load a horse and tow it to town.  Not an easy feat for this child of the suburbs. Then because the all-encompassing horse care apparently wasn’t enough, Hannah started showing an interest in riding motorcycle trials.  If you haven’t seen this, it’s pretty darned cool.  Riding a dirt bike that doesn’t have a seat, the rider has to slowly ride obstacle courses over rocks and logs, while standing, without putting his or her foot down.  Hannah’s inherent balance from riding horses gave her an advantage in riding trials.  And now we have a garage full of dirt bikes, about 20 yards from the horses.  But how could we not support our kid that wants to be active, let alone a great ambassador for learning about T1D?  She can do anything!

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Which brings me to school.  My husband, Joe, is of German descent, still has family in Germany.  So it seemed like a natural choice that our daughters chose to learn German in junior high.  “Learning German is great!  You get to go to Germany!”  (i.e. “You can do anything!).  I can’t quite remember when it occurred to me that sure, she can go to Germany, but um, one of us needs to go with her.  Yes, there would be a teacher and parents with her, but my mind couldn’t even fathom sending her to another country unless accompanied by her parent(s).  Or maybe her endocrinologist or diabetes educator.

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Here are some things we did to make the trip overseas a success and diabetes-related issues manageable:

– Had a note from our CDE that Hannah can carry glucagon, syringes, insulin, etc.

– Packed our completed copy of “Type 1 Diabetes and Babysitting” that has all of her basal and bolus ratios, and walks a person through what to do for lows and highs

– Kept her insulin in its original prescription box

– Had 2 identical bags of diabetes supplies, including insulin, insertion sets, syringes and glucagon, one for Hannah and one for Joe, that did not get checked as baggage (insurance in case a backpack was lost or stolen)

– Temp basal (more insulin) for long plane and train rides

– Changed the time on her pump as she went through each time zone so her basal rates would (in theory) stay the same –

Set up international cell phone plans for outings where Hannah and Joe were not together.  Downloaded free texting apps such as WhatsApp

– Packed a lot of gluten-free alternatives as Hannah has Celiac’s Disease

The Zen of Staying Organized with Diabetes

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Last week, as we were preparing for the first camping trip of the summer, I realized that we are in a pretty good place in terms of diabetes organization.  I think it is so important to be on top of supplies, current prescriptions and emergency instructions so that when you are blindsided with a 400+ blood sugar reading, or a 40 blood sugar reading, at least you and the people around your type one kiddo can take care of him or her.  So what can you do to get organized and stay organized?

1.  Have a central location for all of your supplies.  It might be a closet, a cabinet, a shelf, a plastic tub …. whatever you can designate as that sacred space for only diabetes-related items.  This is where you store everything that is not being carried with your child:  pump infusion sets, reservoirs, syringes, insulin pens, alcohol wipes, lancets, test strips, glucagon, batteries, treatments, protein snacks, cake gel, reference materials.

You may choose to keep insulin here as well if the temperature is around 70 degrees.  We keep the current bottle on the counter with our daughter’s meter, while unopened vials are stored in the refrigerator.

2.  Keep your supplies well-stocked and up-to-date.  Both spring and fall (before school starts) I check glucagon kits and make sure they are not expired.  When we open the last box of reservoirs, infusion sets or test strips, I immediately order the refill so we always have enough.  This is one thing I just do not put off!

3.  From our book Type 1 Diabetes and Babysitting: A Parent’s Toolkit, I made a 4×6 notecard from the chapter, What to Carry With You and When.  This notecard is posted above our supply shelf, and when we prepare to go on a trip or anywhere an hour away from home, I simply refer to this card to quickly make sure we have everything we need.

4.  Have insulin doses updated and easily found.  Again, in Type 1 Diabetes and Babysitting: A Parent’s Toolkit there is a place to quickly jot down either pump settings or insulin schedules.  This is REALLY handy when you are out of town, have to call the endocrinologist and they ask, “What are your child’s basal rates?  Carb ratios?”  Help can come much faster when the information is at your fingertips.

Being organized when it comes to diabetes can not only affect your child’s health, but it helps everyone in the family be a part of your child’s care.  And THAT is a very good thing ….