Thursday, May 31, 2012

One Step At A Time

It's that time of year again.  Every school day involves a different extra activity which requires special clothes, shoes, or something to be remembered in the backpack.  Every afternoon involves a softball game, important pre-recital piano lesson, final ballet class, or end-of-the-year girl scout activity.  The weekends are a blur. 

Which is how we ended up doing site change in two parts yesterday.

We change the infusion site for my daughter's pump every 3 days at the most.  Yesterday was the day.  Ordinarily we do it in the late afternoon, before dinner.  .

Yesterday morning, though, when I went to bolus breakfast, I saw the low battery icon and realized it had been there for a couple of days.  I remembered the walking trip to the high school to prepare for the all district band concert.  I imagined the chaos which would ensue if the battery alarm were to go off there.  It would be to difficult resolve the problem since there's only a 30 minute window to install a new battery before the pump stops delivering.  It was a potential problem which could be avoided.

So yesterday morning while she took the shower she should have taken Monday night, I changed the pump battery and put in a new cartridge of insulin.  By the time she was out of the shower with dripping hair, it was about time to leave for school.  So we plugged the newly refreshed pump into the old site, blow-dried the hair, and she went off to school.

When she came home, we popped in a new site before she changed for the band concert.  The band show was excellent, and even better without the addition of the 'Mexican Hat Dance' pump alarm tune during either the rehearsal or the concert.



Tuesday, May 29, 2012

Being Prepared

Here is a photo from  Friday: packing the 'diabetes box' for our weekend at Grandma and Grandpa's.



Five sets of site change supplies, four vials of test strips, two spare pump batteries and two dozen syringes turned out to be enough for a three day weekend.




Thursday, May 24, 2012

Answers

On Tuesday, I laid out the details of my daughter's tummy mystery.  In summary, beginning in September, she experienced varying degrees of stomach discomfort.  It ranged from mild pain to nausea and vomiting, and resulted in weight loss.  Erratic blood sugars were part of the package too. A gastroenterological odyssey began, which took us through blood tests and trying different medicines and ended at the outpatient hospital for an endoscopy. By this point, it was the beginning of February.  We'd been at this for five months. 

After the procedure (which deserves its own separate post) the doctor spoke with us. There was no physical evidence of any problem, including reflux. A couple of days later, she called to say there were no viruses or unwelcome bacteria living in there. The celiac biopsy was negative. The only result to come back was the lactase. She'd call when it was in, but it could be a couple of weeks.

Three days before we left for Disney, I received the phone call.  It turns out, my child makes less than half of the lactase enzyme that most kids her age make.  She's lactose intolerant. The doctor recommended lactaid products, or chewing lactase replacement tablets before consuming dairy.  I'm happy to report that this has resolved the problem.

Happy may sound like a funny word to use.  But I'll go ahead and add 'relieved,' and 'validated' too.

Perhaps it was the close to six months of worrying, but this seems to be about the best we could have hoped for.  The alternatives were unsettling.  Celiac is a nightmare to live with.  Gastric reflux would include a lifetime of medication.  I was fairly convinced it wasn't an anxiety issue, and relieved to be proven right.  A host of other unpleasant possibilities could have been found during the endoscopy, none of which I even want to consider.

When it comes right down to it, what's one more thing to worry about before she eats?  She has a pre-eating routine which involves blood sugar checking.  She then stops to consider what she's eating as she counts the carbs.  The habit has been easy to pick up. 

The dairy tabs aren't magic, of course. The birthday party with the pizza and ice cream cake was too much.  On a daily basis, though, she's eating her meals, asking for more, and growing. 

And now her blood sugars are wacky from the growing instead of the erratic digestion...which is just fine with me.

Tuesday, May 22, 2012

The Tummy Mystery

Faithful readers may recall that my daughter missed the first day of school because she threw up.  Neatly summed up in one quick post, it may have seemed that was the end of the story.  Unfortunately, the story continued through the fall and winter and is still a part of our lives. 

She made it back to school for day two, but continued to complain of stomach aches and nausea.  In retrospect, her appetite had been decreasing for a few weeks, and it continued to worsen.  Her blood sugars seemed erratic, though whether from the unpredictable diet or its cause it was hard to tell. A doctor's visit showed she'd lost 2 pounds in the past year, not normal for a 9 year old.  The pediatrician thought it might be gastric reflux, from which she'd suffered badly as an infant.  He also tossed around the idea of food intolerances, strange infections, and diabetes' frequent partner in crime, celiac disease. 

A little acid reduction medicine took the edge off the discomfort while we scheduled an appointment with the gastroenterologist.  (Who my daughter, 8 months later, still calls the 'gastroencrinologist').  The doctor agreed it could be any of the things we'd discussed with the pediatrician.  She also spent some time talking with us about anxiety, and about something called 'functional belly pain,' which, as I understand it, involves chronic stomach aches with no identifiable cause. A full blood panel was ordered, as well as an increase in the acid reducer medicine and the addition of a medicine whose side effect was to increase appetite.  We reached the point where my daughter felt pretty good some days, though there were still others when dinner went half-eaten. 

The whole thing continued to be a diabetes nightmare.  We resorted to bolusing only when she was finished because she could not predict how much she would eat before her stomach began to hurt.  Even then, blood sugars continued to be unpredictable.

In early November, the bloodwork came back normal.  No celiac, no strange infections. Her blood sugar was an embarassing 3-oh-something, but par for the course for her when being stuck with a needle. At this point, my child was feeling somewhat better, though not perfect  She'd gained a couple of pounds.  We agreed with the gastroenterologist to wait it out through the end of the year to see how things went.  I remained fairly convinced that this had a definite, physiological cause.  It was increasingly disconcerting that we weren't learning what it was.

In the beginning of January, the symptoms began to worsen again.  A second opinion gave us no additional insight, and deciding we preferred the first doctor, we scheduled another appointment. The end result was the ordering of an endoscopy.  Through this, the doctor would see whether there was physical evidence of gastric reflux, or any other visible problem.  She would also take biopsies for lurking infections, celiac disease, and lactase enzymes. 

Five months after first realizing there was a problem, we hoped for answers. Tune in Thursday to find out what we learned.




Sunday, May 20, 2012

My Hero

Diabetes Blog Week

Day 7 of Diabetes Blog Week is (finally?) here.  The prompt goes like this: Let’s end our week on a high note and blog about our “Diabetes Hero”. It can be anyone you’d like to recognize or admire, someone you know personally or not, someone with diabetes or maybe a Type 3. It might be a fabulous endo or CDE. It could be a d-celebrity or role-model. It could be another DOC member. It’s up to you – who is your Diabetes Hero??

This one is easy.

My daughter is my diabetes hero. 

Because she was diagnosed just after her first birthday, she does not remember a day without diabetes.  This often leads me to wonder, in a chicken v. egg sort of way, whether she'd be the same type of person without diabetes.

Would she be so mature for her age?

Would she be as organized?

Would she be as good at math?

Would she be as persistent? Determined? Some might stay stubborn?

Would she be so calm, cool and collected?

Would she be as self-assured, and care so little about what others thought of her?

Whether these are innate qualities, or the result of life with diabetes, we'll never know.  What I do know is that these traits serve her well in living with this menace of a disease.  She plows through the lows and highs of with little complaint, no matter where they occur or how inconvenient. She laughs in the face of spontaneous finger bleeding and marathon shopping trips for pants with big pockets.  She tolerates being poked with more needles in a month than many people experience in a lifetime. These are just fleeting inconveniences to her.  She knows that 'real life' is elsewhere, and is quickly off to enjoy school, friends, family adventures, piano, softball, ballet or duct-tape crafts. 

Earlier this week, I noted that keeping calm and carrying on in the face of diabetes was one thing we do well. Without my daughter's heroic response to it all, we'd be in a completely different boat.

Saturday, May 19, 2012

Traveling

Diabetes Blog Week

It's not easy to travel with diabetes, but it sure beats staying home!

For today's photo-based topic, I've put together a few travel shots:



FENWAY!!!


Washington, DC


Stone Mountain, Georgia


Cape Cod, Massachusetts


Ithaca, NY

London


Stonehenge

Paris



The Woods of New Hampshire


File:Cinderella Castle at Walt Disney World in Florida.jpg
Disney World!

Diabetes would prefer to stay home, but it doesn't get a vote in our family!

Friday, May 18, 2012

Questions and Answers

She has diabetes.
Type 1, not type 2.
The crying and puking
Gave us our first clue.


She must stop and check
Eight times every day.
Yes...it most certainly
Gets in the way.


That thing on her back?
Or in her left pocket?
An insulin pump.
Not a launch for a rocket.


So all that technology -
It must be a perk?
But yet it takes three of us
To make it all work.


Her pancreas is broken.
It cannot be fixed,
But that doesn't mean that
All sugar is nixed.


The cupcake? The pizza?
Yes, she can eat it.
With insulin and vigilance,
Surely, we'll beat it.


Daytime and night time
The hours between.
Is she high is she low?
Have the carbs all been seen?

The questions - keep asking
But pretty please know
Diabetes is with us
Wherever we go.


Until there's a cure
It won't go away.
It's a primary part of
Each night and each day.


This one falls somewhere between 'what they should know Friday,' and the 'creativity wildcard' prompts for:

Diabetes Blog Week

Thursday, May 17, 2012

The All-In-One-Inator


Diabetes Blog Week


Today's diabetes blog week post asks me to invent my 'fantasy diabetes device.'  The 'magic cure machine,' would be great, but I'm a realist at heart.  Here's one I think my daughter will see in the not too distant future, with some details we'd find particularly helpful:

One site!  One device!  All your diabetes care needs rolled into one!

All the tools you need to manage your Type 1 Diabetes consolidated into one easy-to-use system.
  • One site providing insulin infusion and a continuous glucose monitoring sensor
  • A pocket-sized handheld touchscreen device which provides
    • Blood sugar meter
    • Insulin Delivery Remote
    • Multi-featured log-book
      • use touchscreen to write your own comments ('stupid donut')
      • wireless link for download
      • pesonalized charting, graphing, averaging
    • Continuous Glucose Monitoring with multiple high and low bg alarm options
    • Carbohydrate counting guide with personalization ('Steve's pizza: 1 slice=40g.') 
    • Flashlight feature
    • Programmable reminders for bg checks, boluses and site changes
    • Insert notes anywhere. For example:
      • reminders of treatment parameters with each bg check for children and caregivers
      • notes to children regarding party or playdate foods in absence of parent
      • make a note when carbs for a new food are guessed
      • note when the pump has been unplugged for swimming or sports
    • Optional cellular and wireless internet service, making it your only device
  • All designed, manufactured and shipped by the same medical device company right to your door, right when you need it.

When I described the device to my daughter (who added the touch-screen feature and expanded the notes one), she thought the 'all-in-one-inator' would be a good name for it.  That's what Dr. Doofenshmirtz from Phineas and Ferb would call it.  He'd be hard pressed to find a way to use this invention for evil, though.





Wednesday, May 16, 2012

Reaction Time


A favorite mantra of our first Certified Diabetes Educator was, 'one day does not make a pattern.'  She was right.  One or even two unpleasant 250's could be caused by any number of factors: a bad site, a new cereal, an oncoming illness, bad luck.

Seven makes a distinct pattern, though.  In most cases, three or four should really be enough.  Yet sometimes we're a little slow to react to patterns, particularly of high blood sugars, particularly at night.

As a child with diabetes grows, insulin needs grow too.  The only way to know when to make adjustments is to watch for strings of high blood sugar. 

If the issue is occurring during school hours, I get to work pretty quickly.  The daily 10 a.m. and noon calls from the school nurse begin to annoy me, and I act. 

Overnights, on the other hand, are my downfall.  Regularly checking blood sugars during the night is not the problem. My husband always visits her before he goes to bed, and we check again at 2 a.m.  We even correct highs at those times, though not too aggressively.  It's the next step that trips us up. Any significant changes in insulin during the evening or at night require more work and less sleep.  The dangers of nocturnal hypoglycemia are real.  During the day, my daughter can tell us if she feels low, or someone around her should notice the signs. At night, she's asleep, alone in her room. Therefore overnight changes must be done slowly, and with more frequent monitoring.  It takes many incremental changes to see results.

The coffee budget becomes strained.

Yet letting my daughter's blood sugar linger in the 200's all night is clearly not a better choice, so eventually we address it.  I just procrastinate a bit, rationalizing that I need to make sure it's really 'a pattern.' 

Reacting to these numbers before a week or so has gone by is my one thing to improve for diabetes blog week. 

Diabetes Blog Week

Tuesday, May 15, 2012

Keep Calm and Carry On


Keep Calm And Carry On.

I'm not one to panic. Faced with problems, danger or stress, I'm almost always able to focus on the issue at hand without freaking out.  A former boss once commented, "you know I think if the building was on fire, you'd call me and say, 'Mary, I just wanted to let you know the building's on fire, but I've called 911 and started all the emergency procedures.  Everything is fine.'"

This quality has come in handy in so many diabetes-related situations.  My daughter seems to have inherited (or learned?) this trait as well.

The recent field trip incident included many obstacles to calmness.  My daughter's blood sugar was quite low.  We were in a public place with high security and had to stay with our group.  The glucose tabs weren't  bringing her blood sugar up and she was feeling worse and worse.  These elements and more may have sent many people into full-fledged panic mode.  We kept calm and carried on.

Calls from the school nurse about extreme low and high blood sugars often include a story that goes something like this:  "She tested, got a juice box from the fridge, waited for me to finish with another child, and then very casually informed me that she was 47."  She keeps calm and carries on.

I can't say I've never rage bolused (defined here as "the act of suffering from a high blood sugar for an extended period of time or for an unknown reason and the retaliatory insulin dose. Oftentimes results in a low blood sugar").  Ordinarily, though, I keep calm, and carry on with small doses to avoid the plummeting. 

I'm grateful to be able to calmly face the curve balls diabetes throws our way, and that my daughter is learning to do so as well.  It keeps diabetes from taking over the rest of life.  If every low, or high, or forgotten meter, or stomach ache sent us over the edge, there would be very little time or energy left for the rest of life.  The rest of life is really the important part, so where diabetes is concerned, we keep calm and carry on.

This post is my Tuesday contribution to Diabetes Blog Week.  The topic was 'One Great Thing,' an opportunity to celebrate something we do well in caring for diabetes.

Diabetes Blog Week

Monday, May 14, 2012

Chocolate Cake

I've decided to participate in D-Blog Week, organized by Bitter-Sweet Diabetes.

For my first post, I've chosen a wild-card topic.  I've never posted a recipe here, and while this one is a Valentines Day tradition at our house, it's ease and impressiveness make it perfect for entertaining any time of the year. 

I got the recipe out of an old church cookbook years ago, and have enjoyed it ever since.

Six Minute Chocolate Cake

1 1/2 c. flour
1/3 c. cocoa powder
1 tsp. baking soda
1/2 tsp. salt
1 c. sugar
1/2 c. vegetable oil
1 c. cold water
2 tsp. vanilla
2 Tbs. white vinegar

Preheat oven to 375

Sift flour, cocoa, soda, salt and sugar directly into an ungreased 8 or 9 inch round or square pan.

In a 2 cup measuring cup, mix oil, water and vanilla.

Pour liquid ingredients into the dry and mix with a fork or a small whisk.

When smooth, add vinegar and mix quickly.  There will be swirls...stir just until the vinegar is evenly distributed.

Bake 25-30 minutes. 

Total carbs for whole cake:  360.  I usually make a square cake and cut into 9 pieces, making each 40g.

It's not low-carb, but it's rich and moist all by itself, so frosting is not necessary. That aspect makes it easier to count accurately.  A dollop of whipped cream (or even cool-whip) makes it look pretty, as do a few raspberries or strawberry slices.

Enjoy!

Friday, May 11, 2012

Gearing Up


Next week is the
Diabetes Blog Week

I'll be participating, with the goal of one post per day, on the suggested topics.

For more information, click here!

Meanwhile, enjoy the weekend, and tune in next week!

Tuesday, May 8, 2012

A Priority

Diabetes care is always a priority in our house.  An even keel of blood sugar numbers results in a happier, more energetic child on a day-to-day basis, and will hopefully lead to a longer and healthier life.  There are some days, though, when good control jumps from 'a priority' to 'the number one priority.'

Take the birthday party of a couple of weeks ago.  Considerable attention and energy was committed to frequent checking, correcting, and careful carbohydrate counting throughout the day leading up to the party.  Starting that evening with a pattern of decent numbers in the book increased the chances of a disaster-free evening.

The same attention is needed this week during the state-wide standardized tests at school.  While, as evidenced by last year's nurse's office work-out, rogue numbers are always a possibility, we're doing our best to keep them at bay. 

This week, great care is being taken in hopes of steady blood sugar through the morning tests.  The breakfast insulin bolus is given before the milk is even poured.  The measuring cups and scale are in use to calculate carbohydrates as accurately as possible.  Protein and fiber are players in the meals to lessen the possibility of big blood sugar spikes.  Mid-morning snack is also carefully counted prior to being packed up for school.

Should this happen every morning?  Of course it should.  Some days, though, a bit of unfinished homework or my own priorities for the morning distract us or limit our time.  The strawberries look like about 8 carbs but don't get measured.  The lure of toast with butter instead of peanut-butter is just too tempting.  The 'did I bolus?' conversation takes place on her way out the door. 

Diabetes drops down on our priority list once in a while.  Sometimes it's on purpose. Faced with the opportunity to eat our way through a vacation or hike a mountain, we enjoy it and do the best we can with the diabetes part.  Sometimes it's inadvertent.  We get distracted by the morning rush to school, or by an unexpected bit of fun and need to pick up the diabetes pieces afterwards.

Making diabetes the first priory all of the time does not seem reasonable.  There are times like this week when it becomes necessary.  There are other times when it's necessary to let go just a little bit.  It needs to remain a priority.  Completely forgotten, it tends to make itself known in very unpleasant ways.  Making it the only priority, though, would be letting it win, and we can't have that.

Friday, May 4, 2012

No Big Deal

Nearly a year after she was diagnosed with diabetes, my daughter was due for her annual physical with the pediatrician.  He looked through the chart and observed that he'd only seen us for one sick visit all year.

"Other than the diabetes, she's been pretty healthy then?"

"Well, you know, a cold here or there, but nothing worth coming in for," I said.

"Oddly," he said, "I think my patients with diabetes come in less than the ones without."  Usually, he continued, if I child with diabetes showed up in his office sick, he could be fairly sure it was something significant.

This pattern has continued to be true for us.  My daughter is rarely at the pediatrician, and if she is, there's no arguing about whether she needs to be there.

Is it because we're tired of being in doctors' offices?  With each illness, we carefully weigh whether the visit is worthy of waiting room time, excess germ exposure and a co-pay.

Is it because we're more germ-averse?  Hand washing, hand sanitizer, and avoiding germy surfaces have been a large part of my daughter's life since she was little.  Any illness provides a blood sugar roller coaster in addition to its standard symptoms, so we avoid all we can.

Is it because we're more attuned to symptoms?  The constant vigilance of diabetes means being more physically aware.  Perhaps this makes it easier to differentiate a serious illness from a passing cold.  Additionally, the clues of blood sugar fluctuations and ketones can often alert us to the severity of the problem right here at home.

None of this is to say that she's never been to the doctor to be sent home with 'just a virus.'  If it includes a high fever, a weird rash, or if it won't go away, I take her in.  It's simply that I thoroughly assess the situation first.

Those of us who care for diabetes become increasingly confident in our medical expertise.  Perhaps, therefore, we become more confident in differentiating between an illness which is doctor-worthy and one which is no big deal.

Tuesday, May 1, 2012

First Steps

The tickets were purchased in December. Joshua Redman, a favorite jazz artist, would be performing in a small theater half an hour from here.  They were a perfect Christmas gift for my husband.

The birthday invitation arrived a month ago.  The party would be in the private room of a pizza parlor, for a very good friend.  The girls would design t-shirts, eat pizza and enjoy a 'cookie cake.'  At the end, there would be a fashion show of their creations. 

Both big events were scheduled for last Friday night.  Could we pull it off?

The logistics were easy.  We took the front end of the carpool, dropping the girls off before a rare dinner out ahead of the concert.  Grandpa was happy to be asked to be here when my daughter was brought home. 

The diabetes part required a leap of faith.  The only other party my daughter has eaten at without me  involved one unfrosted cupcake for which I calculated the carbs when I dropped her off.  This party required checking before pizza, and bolusing for pizza and dessert. When she got home, she had to check again before bed and independently make a decision about what to do with that number, since by then our concert was underway.

In an effort to simplify, we negotiated a dessert alternative of packaged chocolate chip cookies. The birthday girl's mom had brought these for a guest who was allergic to an ingredient in the cookie cake. The comparative ease of counting these compared to a yet-to-be-cut square of frosted cookie cake made them a safer choice.  We armed my daughter with a carb count estimate for pizza and kissed her goodbye.

When we saw her again around 11:00, she was sound asleep with a blood sugar of about 170. 

Five years ago I thought this type of evening would be impossible.  It seemed like diabetes would always be way too much for her to handle by herself.  Yet a slow transition to independence is happening.  The expression on her face Saturday morning reminded me of the one after she took her first steps. Soon there will be no stopping her.