Support

I'm going to take a little liberty along the time-space continuum and continue Thanksgiving weekend one more day. While we traveled this weekend, I was reminded how thankful I am for support along our diabetes journey from our family and friends. We were very fortunate to spend the weekend with people who are concerned and interested in a helpful way when it comes to my daughter's diabetes. I'd like to share one example of the kind of friendship I feel very blessed to have enjoyed.

We visited a couple this weekend with whom we've been friends since long before we had children. They and their 2 kids are great people and there are many reasons we enjoy their company and friendship.  As I think of so many people with diabetes who spent this past weekend surrounded by family and friends who simply don't get the whole diabetes thing, I'm ever more thankful to have these and other people in our lives who do.

These friends were at our hospital bedside after diagnosis, with funny gifts for my tiny daughter and treats and hugs for us.  They were kind enough to feed and shelter my husband for a night during our hospital stay since we'd been helicoptered to a city over an hour from home.  This hospitality allowed him to get some rest, to have a civilized shower and to bring some calm and perspective back to a challenging situation.

When we returned for appointments at the diabetes center where my daughter was diagnosed, we were invariably invited to this home afterwards.  I'd arrive at 4 or so, exhausted from the appointment's conversations and from the travel. I'd have an over-done toddler in my arms who'd just screamed through a blood draw.  We'd be escorted to their great playroom and I'd be handed a glass of wine and asked how things went this time while my daughter was handed an amazingly distracting toy or craft.  My friend would work with me ahead of time to plan a dinner my daughter could enjoy despite the NPH and humalog shots of that era and their related dietary limitations. There were always string beans, my daughter's favorite vegetable- at least when cooked al-dente the way our friend always makes them. Husbands would arrive from work in time for dinner and I'd leave the house relaxed as my daughter dozed on the drive home.

Several years ago, we moved a few hours away and don't see these friends as often.  Yet when we do, they remain concerned and interested in all things diabetes.  They still go out of their way to make their home and meals hospitable to my daughter when we arrive, saving carb counts, stocking seltzer, and asking questions.  We spent a great evening with them last Friday, catching up on all sorts of things.

And, of course, enjoying the string beans.

Did These Things Really Happen?

I feel like much of what I write about here involves changes related to growing up and gaining independence. So instead of today's regularly scheduled change-related topic, I went with a wild card choice for today's Diabetes Blog Week Post.  The prompt asks me to share the top 3 craziest stories I have about living with diabetes.  It goes on to say, "If you can't think of three, don't worry. We're just as happy with one or two..." That was not my problem.  Dozens of stories came to mind. So I created 3 categories and picked one from each:

Craziest Medical Experience:

This category has some solid runners-up.  There was the time the pharmacist suggested I have my daughter's humalog diluted by my veterinarian, and the time the lab tech slowly and cheerfully explained every detail of the blood draw.  But the winner goes to diagnosis day.  We'd been at our local hospital for a few hours.  We knew my daughter's blood sugar was 'very high,' but while several doctors and countless nurses had assessed her, there was (alarmingly, in retrospect) no diagnosis or treatment yet.  We were about to be loaded into a helicopter for transport to the children's hospital.  As I stood next to the transport EMT she turned to the doctor in charge and told him she would not put my child in the helicopter until he ordered an insulin drip.  I'm convinced to this day that after hours in the emergency room it was an EMT who first recognized that my child needed to be treated for diabetes.

Craziest Era:

The NPH days were awful.  They lasted for almost 2 years, while my daughter was between the ages of 1 and 3 at which point she started with  a pump.  They coincided with her short but ill-timed picky eating phase.  Here's a snippet of a piece I wrote about those picky months and having to eat when the NPH peaked:  I spent the first two months of 2003 trying, religiously, to stick to the “meal plan” sent home with us by our medical team.  Starch, protein, fruit, milk.  Every day at 1 p.m.  There was screaming and crying.  Yelling and throwing of stuff.   Sometimes she would throw stuff and I would cry.  Sometimes we’d trade.   It was reminiscent of Green Eggs and Ham, without the happy ending.  Would she eat it in her chair?  Would she eat it over there?  Would she eat it if I sing?  No…she won’t eat ANYthing.  We’d inevitably end up sitting on the kitchen floor, covered in yogurt or peanut butter, in an exhausted stalemate. And then there was a low blood sugar at 2 p.m., for which I’d have to squirt cake decorating gel into her mouth because she’d refuse to drink juice.  I eventually sought and received help from our excellent diabetes team.  But if I had to pick a time when diabetes sent me closest to the brink of insanity, this is it.

Craziest Encounter with a Muggle:

When my daughter was 4 years old, we were in line to enter a museum.  The woman behind us in line got my daughter's attention and asked, "Is that a t.v. you have there?"  I can still see my child's blank stare, and how it was mirrored on my husband's face.  "There...on your back?" she persisted.  Aha.  Lacking pockets, my daughter was wearing her pump in a waist pack with a clear window.  I took a deep breath and silently exhaled all of the snarky and sarcastic replies which came to mind.  Instead, as politely as I could, I replied, "No!  It's actually an insulin pump; to treat diabetes."  That stopped the conversation dead in its tracks. "Oh," replied the inquisitive lady.  She clearly thought this a much less logical possibility than that of a 4 year old wearing a television on her back.

Want to read some more crazy stories?  I know I'm looking forward to it.  We'll find the links HERE!

Looking Back: Shots

From the time my daughter was diagnosed at 13 months old until she was almost 3 and got her first insulin pump, we managed her diabetes with shots of insulin.  She usually received 3 shots per day: breakfast, afternoon, and bedtime: thigh, arm and bottom respectively.  Each one was a challenge.

During our hospitalization, an educator suggested having a specific location in the house where diabetes care took place, particularly the painful and scary parts.  This turned out to be among the best practical advice we received. The upside was that she knew that in all the other rooms of the house, she was safe.  Nobody was going to appear with a needle or a lancet. The downside, of course, was that if she was being taken to the room she was bound to get jabbed with something.

The good news was that there was a t.v. in the room and t.v. was a rare treat.  People with kids my kid's age will remember the advent of 'Noggin' and be familiar with Oobi, Oswald, and Miss Spider's Sunnypatch Friends.  Oobi was on approximately 12 hours a day I think, despite a very limited number of episodes. Those peculiar talking hand people will be forever intertwined with my experience of giving insulin shots.

Day after day, we'd go into the room, I'd turn on Oobi and we'd check her blood sugar, which she called 'doopities.'  I'd draw up the insulin shot based on her blood sugar and anticipated meal carbohydrates.  Then came the fun part.

Anyone who's met a toddler knows they're not the most consistent bunch.  Sometimes she'd cooperate, and sometimes she'd (understandably) want no part of this activity.  Sometimes she'd change her mind about how she felt about the whole thing halfway through.  So it was necessary to immobilize her as much as possible.  If she decided to flail at the syringe halfway through a shot, not only would she not get her proper dose of insulin, but she could cause injury to herself and possibly to me.

For the arm and leg shots, I'd gather her into my lap and become a pseudo-octopus.  I'd wrap one arm around her, pinning both of her arms to her sides and her legs between mine.  Then, with the pinning arm, I'd pinch up a little arm or leg fat and with the 'free' arm, I'd administer the shot.  Bum shots involved pinning her standing against the bed with one arm holding her arms and the other administering the shot.  This one was easier with 2 people and 4 hands, so became our evening site so daddy could help.  These methods were not, incidentally, suggested by medical professionals but rather the successful result of much trial and error.

I surely couldn't have gotten through those first couple of years without help. I've thanked family, friends and medical professionals who gave support and advice. I just wish there was a way to thank Oobi, Uma, Keiko and Grandpoo.

Doopities

"Do my doopities?"

I still remember the first time my daughter asked this question.  She was very low.  She had some juice.  I breathed a sigh of relief.

Within a couple of months of being diagnosed with diabetes at the age of 13 months, my daughter had made up this word.  "Doopities" meant checking her blood sugar.  Nonsensical?  Absolutely.  But when it was time for food or bed, we'd say, "let's go check your blood sugar," and she'd say "doopities."

"Do my doopities?"  The first time she asked this out of the blue, she was maybe 24 months old.  She felt low.  She knew what she needed to do.  It was a bittersweet moment for sure.  Mostly, though, I was relieved.

From the day we brought her home after being diagnosed, we spent every waking moment watching her like a hawk.  Was she slowing down?  Were her eyes glazy?  Was she pale?  Why was she crying?  Was she lying in the grass because it was fun or because she didn't feel well?  Was it o.k. to let her play in the sandbox by herself 40 yards from where I was weeding the vegetable garden?

After this first request for 'doopities,' we were not, of course, home free.  She was 2. We watched her like a hawk for several more years.  We still usually picked up on lows before she did.  We still needed to be responsible for keeping her safe.  Yet at that moment, we turned a little bend which brought us all the way to where we are today.

Now that's she's 12, it's increasingly rare that I'm the one suggesting she check her blood sugar.  Once in a blue moon there will be excessive crying.  Those eyes still noticeably glaze over sometimes.  More often than not, though, she catches lows on her own.

But these days she just says, "I need to check my blood sugar."

You Should Really Call Your Vet

Diagnosed at 13 months old, my daughter started her time with diabetes on tiny doses of insulin.  The NPH was measured in half unit doses, so with the smallest insulin syringe we could measure that dose accurately.  The Humalog dose was often best measured in increments of .25 or less.  It was much safer and easier to prepare those doses with diluted insulin.

The pharmacy at the children's hospital diluted our first batch for us.  We did some research and discovered we had what's called a 'compounding pharmacy' very close to our home.

Per Wikipedia, "Pharmaceutical compounding (done in compounding pharmacies) is the creation of a particular pharmaceutical product to fit the unique needs of a patient. To do this, compounding pharmacists combine or process appropriate ingredients using various tools. This may be done for medically necessary reasons, such as to change the form of the medication from a solid pill to a liquid, to avoid a non-essential ingredient that the patient is allergic to, or to obtain the exact dose(s) needed or deemed best of particular active pharmaceutical ingredient(s)."

Initially, this service was ideal.  We got to know the head pharmacist well, and he took a shine to my daughter.  The pharmacy was also a fabulous gift and card store, and had fun toys to check out while we were there. 

After nearly a year of seamless insulin pick-up, the pharmacist retired.  He explained that other staff members knew how to dilute the insulin and that we should have no problem.

One afternoon, I picked up my insulin and brought it home.  I took it out of the box, and noticed it looked different.  It was full strength Humalog.  If I'd measured 5 units of that on my insulin syringe for my daughter's .5 unit dose, it would have been disastrous.

I took it back.  Someone diluted it.  The next time I checked before I left the store.  It wasn't diluted.  I pointed out the problem to the pharmacist.

"We don't ordinarly dilute insulin.  You should really be having your vet do that for you."

"My vet?"

"Yeah...they do that all the time."

My daughter was next to me, holding my hand. "I've never taken my daughter to a vet before."

A blank stare.

"It's for her," glancing down at my little girl, "not a pet."

"Oh...I'm so sorry, maam." 

At our next appointment, the educator taught me how to dilute my own insulin.  

Size Matters

*This post is my June entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2013/june-dsma-blog-carnival-3/  The prompt reads, "We’d like to know: How do you select the diabetes devices you use? To others looking into new or replacement devices, what would be your best advice to someone shopping around?"

My daughter was 2 when we chose her first insulin pump.  She was tiny, and she needed tiny doses of insulin.

Our endocrinology team had brand of pump they were most familiar with, but encouraged us to do our own research and to come back to discuss.  I ordered brochures from all the major pump companies.  Side note: that's a very old-fashioned sounding sentence and makes me realize how much the world has changed in 10 years.  There was precious little online research involved in this decision.

I spoke with people in the support group I was attending at the time.  I compared all of the information I got with my daughter's needs and my own concerns.  I went back and discussed our options with our diabetes team.  I concluded that size does, indeed, matter.

Size of dosing mattered most, and at the time Animas was the only pump which could deliver basal increments of .025 units.  In such a tiny person, the flexibility of really fine-tuning those basal rates seemed important.  Indeed it was. For the first year or so on the pump she had an overnight basal of .025 units for a couple of hours every night.

The size of the pump mattered too.  I needed to be able to tuck it away.  No matter which brand we chose, a pump pack would be its home.  Yet even a half an inch would make a difference in how much it showed, and how it fit under a shirt, dress or overalls.  Animas was best in this category too, being the smallest option on the market at the time.

Other positives came up in my research, including good customer service, good initial training, and forward thinking product development.  There was no difference in insurance coverage. The only downside was that this was not the pump our diabetes team was most familiar with.  Yet they were all for the tiny doses and tiny size of the Animas pump and agreed it was a good fit for our daughter.  We've been quite happy with it ever since.

So what advice would I give other diabetes device shoppers, the prompt asks?  Gather information from as many sources as you can, while considering your own unique needs. Recognize that your diabetes team's suggestions are based on experience.  That can be helpful, but could also mean they're suggesting primarily those products they're most familiar and comfortable with. Ultimately, the product will be yours, worn on your body, or carried everywhere in your bag.  It needs to have the features you consider the most important for you.

Playgroup

During my daughter's baby and toddler years, we attended a great playgroup in the community center gym. The local 'mothers club' had collected a plethora of toys and secured a closet in which to store them.  Every Friday, the toys were dragged out into the gym and children from birth to four were invited in to play.  A weekly donation of $2 got you two hours of playtime, a snack and juice, and even a cup of coffee for mom. 

My daughter and I, for the most part, enjoyed it.  She liked the 3 different play kitchens, the giant bouncy balls and the dress up clothes.  I liked meeting other mothers and having somewhere to go, particularly on frigid winter mornings.

This was one of the first places we brought diabetes out in public.  One or two other moms knew my daughter had diabetes, but I imagine many wondered about us; especially at snack time.

The kids would all sit on a couple of blankets laid out on the gym floor to eat their snacks.  Most mothers would then head for the coffee or sit on the bleachers and chat.  We'd head over to the side to check her blood sugar.  I'd then vet the snacks for carbs and determine whether she would eat the playgroup snack of the day or an alternative from my bag.  She was on NPH at the time, so very restricted at snack time. I would then awkwardly hover over the eating children.  I needed to be sure she ate her snack, and didn't eat anybody else's. What if she got her hands on somebody's juice? When snack time was over the children would be instructed to throw away their trash and go back to play.  More often than not, I'd have to drag my child over to the bleachers and make her finish her goldfish before she could go back out there. 

At home, diabetes was becoming part of our routine and its intervals were becoming second nature. The contrast of being somewhere diabetes wasn't part of the routine was challenging for both of us.  It was isolating to be the mom obsessively observing toddler snack time instead of sharing potty training tips over coffee.  My daughter desperately wanted to get back and play whether she'd finished her snack or not.  She wanted the playgroup snack whether it was goldfish (o.k.) or donuts(not o.k.).  She was really little, and any parent can therefore imagine her reaction to not being allowed to have her way.

In retrospect this was the beginning of a long series of moments when we brought diabetes along with us despite its challenges.  Yes, there were 2 or 3 days when I had to give up and bring her home because she melted down at snack time.  Most weeks, though, the fun far outweighed the challenge.  I wasn't going to let the possibility diabetes might throw us a curve ball stop us from enjoying a happy morning out.   A few years have passed, but that last bit remains just as true today.