Scene of the Crime

On Christmas eve I had the unexpected opportunity to revisit the emergency room where my daughter was diagnosed with T1D.

I was the patient this time, having passed out on the kitchen floor of my in-laws' home first thing in the morning. It turns out that I probably should have been taking better care of the bronchitis that had been brewing over the preceding week instead of powering through Christmas prep, travel and time with family. The good news was that the experience was more surreal than serious and I'm making what promises to be a full recovery from both the bronchitis and the ribs I injured on the way down.

We lived two towns away from my in-laws when my daughter was diagnosed, so the drive to the hospital at dawn was familiar. Winding roads taken at a speed slightly over the limit, the beginning of daylight, anxiety and uncertainty. At the ER entrance there seemed to be an upgraded reception area, but the interior was about the same.

I was settled onto a gurney in an ER sized cubicle room and asked a hundred questions. A team of professionals got busy taking my vitals, taking some blood, and hooking me up to machines to continuously monitor my oxygen, blood pressure and heart. And all I could think about was 16 years and 3 days before, when I stood where my husband was standing. Out of the way, but in clear view, watching my daughter being hooked up to all of those things. And the interminable wait while they tried to get blood and insert an IV into her tiny dehydrated veins. I made out much better in that department.

Near the end of my 4 hour visit I was taken for a walk around the unit while hooked up to equipment to monitor my blood pressure and oxygen - making sure nothing dropped precipitously while I was upright and moving.

We passed the cubicle my daughter had been in. We saw the conference room where the doctor had taken us to discuss her condition. We walked over the place where I had stood with the helicopter EMT when she demanded insulin be started before transporting my daughter.

When I was released, I exited through the ER doors and we drove past the helipad from which my daughter and I had taken off, headed to the big children's' hospital in the city. We drove back to my in-laws' where my daughter had been hanging out with her grandfathers, playing cards, starting a crock-pot dinner and making and bolusing for her lunch.

In Other People's Hands

I met a woman the other day who was an occasional substitute nurse at the middle school.  While this was the first time we'd met, she knew my daughter well.  There are others like her.

I have sent my child to school, on field trips, to birthday parties, to marching band camp and more.  The older she gets, the more people we collect who've helped her with her diabetes care. Some I know well, some I've been introduced to, and some I've never met.

I wonder if the people in whose hands I've left her fully understand how I feel about them.

These people have taken my child's life in their hands. Maybe they don't realize that, or look at it that way. I certainly wasn't going to point it out in quite those terms to the preschool director who agreed to accept her into the program. Those weren't the words I used when I thanked the parents who invited her for her first sleepover. But these, and many more adults, have been aware that having my daughter in their class, in their home, or in their field trip group necessitated an extra level of responsibility and vigilance.

If taking on that level of responsibility wasn't enough, these people have, quite often, gone above and beyond what I would have expected. Parents have contacted the birthday party venue for carbohydrate counts on food. Teachers have requested to be glucagon trained for my child's safety. Chaperones have sat with her while she stopped to check her blood sugar. Guidance counselors have called about 504 accommodations I never would have considered. Nurses have called just to reassure me that everything was okay. I'm incredibly grateful for every one of these thoughtful acts.

Being the parent of a kid with diabetes is a huge job. Being a kid with diabetes is an endless challenge. We're incredibly grateful for the people who step in to ease the burden in whatever ways they can.

A Bittersweet Week

Christmas is coming. The carols are playing...everywhere. We're making cookies. There are pageants and parties and concerts. The stockings are hung by the chimney with care. We'll gather with family this weekend. We'll attend a candlelight service. Santa will come. Gifts will be exchanged.

We'll enjoy all of those moments, but with a unique perspective.

Fourteen years ago we spent this week at a children's hospital. We'd been helicoptered there on December 21st with a very sick baby. We spent the night in the ICU and the week at the hospital. We spent the week grateful for life, knowing that our baby had been treated just in the nick of time. We spent the week scared and overwhelmed by the ways our world had changed with the diagnosis of diabetes. We spent the week surrounded by other hospitalized families, some of whom were not expecting as happy an ending as we had been granted.

The experience has forever added a bittersweet thread to our family's Christmas week.

This year's first tears came while I watched my daughter narrate the Christmas pageant on Sunday. I was overwhelmed with gratitude that she was there at all. The specter of what could have happened if we'd waited even hours more to take her to the emergency room lingers a little closer during this season. Hearing her beautiful voice and watching her smile at the little angels scampering down the aisle stood in stark contrast to what might have been.

I'll tear up when we sing 'Away in a Manger' at the candlelight service. I sang it hundreds of times to calm my baby in her hospital crib. I'll skip wearing mascara to the school holiday concert, and take a few deep breaths when I unbox a Christmas decoration we were given in the hospital fourteen years ago. I'll experience a flood of empathy when I encounter or hear about people who are spending this Christmas in a hospital, or in a shelter, or who are grieving or afraid this season.

The thread of Christmas 2002 runs through all of our future Christmases. While it's not a thread I would have chosen to weave into our family's story, it has added a depth of meaning to all of the Christmases that have followed. The thread reminds us that at the core of this season's stories there is light and hope despite the apparent darkness and despair.  As I wrote to conclude the first post I ever wrote for this blog:

My daughter’s second Christmas, when we sat together in the cafeteria of the children’s hospital eating prime rib off of Styrofoam plates, remains one of my favorite Christmases ever.  Despite all that we had lost in the preceding days, we had each other, we had the power of modern medicine, and we had hope. 

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!

Elmo In Grouchland

There was, for some reason, a recent conversation about Sesame Street.

"Like in Elmo in Grouchland,"  my husband replied in response to some important point.

"I never liked that movie," my daughter piped up.

No wonder.

My daughter recalls nothing of her diagnosis story.  She was only 13 months old, too young to remember the emergency room, the helicopter ride, the subsequent emergency room, the intensive care unit or the excruciatingly slow days on the regular hospital floor.

We had some toys with us, and the hospital had some we could bring into the room.  We had a collection of picture books, and some crayons.  There were excursions for different tests and blood work.  The nurses came and went.  But a 13 month old in a hospital crib is tough to keep busy.  Up until this point, t.v. had not been a big part of my daughter's life, but this felt like the time to let her watch a little.  Anything, really, to make the time go by.

There was a t.v. in the room which had limited channels- especially for a 1 year old.  The PBS morning shows were about all we had.  She wasn't into Jerry Springer or Days Of Our Lives.  There was also a VCR  in the room (yes- my child is now 100 years old).  The selection of videos for anyone under 7 or 8, however, was tiny.

In fact, the only one we found which seemed relevant was "The Adventures of Elmo in Grouchland."

So we watched it.  Every day.  For 6 days straight.  If nothing else, we reasoned, we were all temporarily distracted.

My daughter has apparently seen it since, though I don't recall viewing it with her.  But then again, I don't recall viewing it the first 6 times either.

It appears 'The Adventures of Elmo in Grouchland' has impacted each of us in very different ways. How have we developed strong opinions on one hand and complete cinematic amnesia on the other?  I'll speculate:

For my daughter the movie is somehow intertwined with a week of her life which, despite not being able to recall the details, I'm certain she did not enjoy.  Subconsciously, I'd guess,  she connects that movie with a week of endless discomfort, stressed parents, and everything being very new and different.

For me, I don't think I ever really saw it to begin with.  It was on in the room, but I was so overwhelmed by the whole situation that I used that 73 minutes to zone out completely.  It was a rare moment in each hospital day when I could let my mind wander, assimilate a fraction of the new information coming at us, rest, and regroup.

Or the maybe the movie is just genuinely terrible and forgettable.

What I am sure of is that we'll never watch it again to find out.

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.

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.

Memories of a Wedding

Today we’re going to share our most memorable diabetes day. You can take this anywhere.... your or your loved one's diagnosis, a bad low, a bad high, a big success, any day that you’d like to share.

'Most' memorable day would still be diagnosis, but that's already been covered here, so I've chosen another of many memorable diabetes moments:

My sister-in-law's wedding day was memorable for many reasons.  It was a gorgeous fall day.  The cememony was held outdoors in the gazebo on a quaint New England town green.  My husband and I were both in the bridal party.  My daughter was about to turn three, and looked adorable wearing a wrist corsage especially chosen by the bride.

What makes this a memorable diabetes day is that my daughter started pumping insulin just days before the wedding. 

Until she started pumping, we were giving my daughter shots of NPH insulin twice a day and covering her biggest meals with shots of humalog. There was therefore no wiggle room in a very tight schedule.  If she didn't eat snacks when the NPH peaked, she'd experience  low blood sugars.  If she ate more carbs than 'prescribed,' her blood sugar would be high.  This highly regulated eating routine made every day difficult, but made special occasions a nightmare.

Imagine, if you will, bringing a 2 year old to a party where snacks are out on a table.  People are eating crackers, grapes, cookies and mini hot dogs.  Your child may have 8 grams of carbohydrates at exactly 3 p.m., and nothing else to eat until 'dinner time' at 6.  We had lived this scenario for nearly two years.  This wedding day brought into focus how significantly our lives had just changed with a new pump tucked neatly under that little party dress.

Allowing my daughter to eat a couple of ritz crackers while we waited for our turn with the photographer was life-changing and no, I'm not using that term loosely. 

The main meal was served at 1:30 p.m., which just a week before would have required us to pack a separate lunch for noon.  We then would have spent our mealitme distracting her from the fact that everyone else was eating and all she got was a glass of crystal-light and some celery sticks. 

When her aunt and new uncle cut their cake at 4 p.m., she was first in line for a slice and I calculated my first SWAG bolus.

That October day  represented new beginnings.  It was the start of a new and happy life for my sister-in-law and her husband.   It was also the start of a slightly simpler life for our family; one in which we could participate in social events without the anxiety and discomfort our previous diabetes routine entailed. 

Thankful She Was Diagnosed

I'm occasionally reminded of how thankful I am that when she was 13 months old, my child was diagnosed with diabetes. 

She'd been fussy since Friday, wanting to be in our laps or close to us.  She wasn't sleeping well.  Saturday evening, she cried a lot.  Saturday night, she threw up.  By Sunday morning, she was lethargic, and seemed dehydrated.  The pediatrician told us to go to the local emergency room.

What seemed like gallons of blood were taken from her screaming little body.  It felt like hours before a vein was found for the IV.  Neurological tests were done.  Urine was taken.  We were then taken in a room by the e.r. doctor and told that our daughter was 'extremely ill,' and that he did not have a diagnosis.  He requested permission to perform a spinal tap to look for meningitis and possible other causes.  We agreed.  What choice did we have?  A couple of hours after our arrival, lab results arrived showing a high blood sugar (in the 800 range if memory serves) in addition to other chemical imbalances.  The hospital team continued to search for a diagnosis, unable to comprehend that a baby could have diabetes. Four hours after our arrival, we were in a helicopter on our way to the regional children's hospital.  That is where insulin was first administered, mostly I believe to this day, because the medevac team insisted upon orders to do so before they transported her.  Upon our arrival at the children's hospital, treatment for diabetic ketoacidosis was intense and thankfully successful.

Ten years later, I still hear stories like mine. A previously healthy child is brought to the pediatrician or the emergency room with symptoms which include lethargy, thirst, weight loss, stomach discomfort, headache, and exhaustion. A wide range of diagnoses are handed out, and too few of them are diabetes. Some of these kids are properly diagnosed in a day, a week, or longer. Some are not.

What if emergency room and doctor's office protocol for a child exhibiting 'flu-like symptoms' included a blood sugar check with a glucometer as part of the initial set of vital signs?

What if medical personnel were systematically educated on the signs and symptoms of type 1 diabetes onset in children?  What if they knew it was entirely possible and increasingly likely for babies to develop diabetes?

What if posters or flyers or e-mail blasts about the signs and symptoms of type 1 diabetes were regularly provided to medical offices for staff and patient education?

Tom Karlya of Diabetes Dad is currently collecting stories about kids who were lucky enough to be diagnosed when things could have turned out even worse.  These will be carried to Washington in hopes that some funding can be earmarked for an awareness campaign about Type 1 signs and symptoms. Nobody deserves to have diabetes, but every kid deserves to have diabetes if the alternative is death. 

Looking Back: Where

Before we left the hospital with our newly diagnosed daughter, a wise diabetes educator suggested we designate a place in our home for diabetes care.

Particularly with a 13 month old baby, this was incredibly important advice. My daughter obviously did not understand why she was now being subjected to pokes from sharp objects many times a day.  She only understood that she did not like it.

The suggestion was specific.  We should choose a place where she did not otherwise ordinarily go.  The idea was that the dining room table, the kitchen,  her bedroom and the bathroom would remain safe places, with happy connotations.  She could sit on the living room floor playing with her blocks assured that mommy would not suddenly appear with a syringe.

Our bedroom became the diabetes room.  Blood sugar checks, insulin injections, and subsequently site changes all took place there.    The hook to lure her in there was that the t.v. would be on.   She'd then be distracted by the t.v. while her blood sugar was checked or her shot was given.  She watched hours of Little Bear, Oswald, Oobi and Blue's Clues, all in five minute bits.  The existence of Noggin, now Nick Jr., played a huge part in our early diabetes experience. 

By her choice, we gradually progressed to blood sugar checks taking place wherever it was convenient, and she keeps those supplies in her room now. 

To this day, though, she still prefers to do site changes in the spare room of our current house, with the t.v. on.  The shows are different, but the idea remains the same.  This bit of diabetes care is confined to a room my daughter doesn't often frequent.  Out of sight, out of mind.