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Monday, May 30, 2011

New Digs for Dex

Our beloved Dex has been sitting in rice for two days now. It's still not showing any signs of life, but I can still see moisture in it, so I'm not giving up hope just yet. 
I'm really curious as to whether the rice will do the trick. I suspect the rice needs more time to work its magic. So I'm giving it time, and I'll keep you posted on what happens next, if anything.
Dex #2 should be here on Tuesday, and I wanted to be ready for its arrival. 

We're not taking any more chances with Dex this summer! So today, we went to R.E.I. and bought a waterproof case for it.
I got the idea from Jen at I am Your Pancreas and Roselady at Diapeepees. Thank you, ladies!

Dex fits well inside the case, and then the case holding Dex fits nicely into the side pocket of Jack's cargo shorts. I think it's going to provide perfect protection for summer camp, where swimming and water play are a part of every day. 

It will be great for when we're at home, too...just in case Dex happens to take another dive.


And just in case you're wondering...



Saturday, May 28, 2011

The Day Dexcom Took a Dive



My kids love to swim. So you can imagine the excitement in our house today, when I announced that they could go swimming for the first time this year.
They changed into swimsuits and covered themselves in sunscreen faster than you can say “summer’s here!”
Then they raced into the backyard and jumped into the pool with glee. 
They played. They splashed. They swam from one end of the pool to the other. They did cannonball after cannonball.
After one particular cannonball, Jack popped up from underwater and began a string of repeat phrases, “Oh, no! Oh, no! Oh, no!”
“What’s wrong?” I asked.
“I’m so sorry, Mom. I’m so sorry. I am so sorry.”
“What are you sorry about? What’s wrong?”
“I forgot. I just forgot. I completely forgot.”
“What are you talking about? What did you forget? Why are you sorry? What’s wrong?”
He pulled the receiver for his Dexcom continuous glucose monitor out of the pocket of his swim trunks, and said, “I know you said to take it out, but I forgot. I’m so sorry.”
Jack was filled with remorse, and Dex was filled with water. 
Dex’s screen was blank. 
I pressed every button, striving for electronic CPR, but found no pulse. Dex was dead.


In a poolside panic, I called Gregg, who was at work. “Can you please call Dexcom?” I asked. “Jack took Dex swimming. I think Dex is dead. See if Dexcom has any advice. I’d call, but the kids don’t want to get out of the pool and I want to focus on them, not a phone conversation. But since it’s late on Friday afternoon, before a three-day weekend, I think we should call there immediately.”
We hung up, and Gregg called Dexcom.
I remembered reading somewhere that if you submerge water-logged electronic devices in rice, then the rice will draw out and absorb the moisture. 
So, I asked the kids to get out of the pool and take a quick swimming break.
While the kids played on the patio with the dog, I ran into the house, grabbed a container of rice and submerged Dex. He’s been in there for several hours now. I've checked on him a few times, and he still doesn’t appear to be working. I’m hoping that by tomorrow the rice will have revived our beloved Dex.


Even if he’s really, truly kaput, we’ll be okay. Gregg didn’t want to take any chances. When he called Dex, he ordered a new receiver.
And we both a made a mental note: never let Dex take a dive again!

Friday, May 27, 2011

Amazing Kids

Are you ready to smile? 
Because this post will have you turning up the corners of your mouth.
My fabulous friend "M" called. I didn't hear my cell phone ring. She left a voice mail message, asking me to call her. By the time I discovered the message later on that night, it was too late to call her back. So I shot her an email.
Hey there,
Just got your voice mail. It's now 11:30pm. I don't want to call you this late. I'll be around in the morning, if you have time to talk at work. Sorry I didn't hear the phone ring. When the phone is in a different room, I don't hear it, and usually don't check it until I'm ready to go to bed. 
Have a good night!
H
As it turned out, "M" was still awake, too, and she wrote back.
No problem. "A" ["M"’s eight-year-old daughter] just wanted to tell u that she & her friend had a lemonade stand today & she made a jar that said "donations for juvenile diabetes" & she collected $3 in that jar. She said she is going to give u the $ whenever she sees u next.
Could "A" be any sweeter??? After reading that, I had to go running for my tissue box. I was all teary-eyed. "A" has such a caring, giving heart! Such a great girl! Love her!
Now, go read Joanne’s post on Death of a Pancreas about another amazing kid, Lizzie, who has created Cranes4aCure, a fabulous fundraising project for JDRF. 
Nine-year-old Lizzie wants to help find a cure for diabetes. So she folds origami cranes, and her cranes feature the names of children, who have been diagnosed with type one diabetes. We felt honored when she asked if she could make a crane for Jack. Of course, we said yes!

Lizzie holding the crane she made for Jack in her right hand
Lizzie hopes people will support her project and donate. As of today, she has raised over $671.00. Her goal is $1,000, though she says she’ll keep going even after she reaches her goal.
On her website, she says, “It is said that anyone who folds a thousand origami cranes will be granted a wish.”
Let’s hope her wish comes true!

Wednesday, May 25, 2011

Did she really just say that?

We were at our kids’ end-of-the-school year party. 
I had attended the entire three-hour celebration, following Jack around the park, carrying his D kit, monitoring his behavior and his coloring, testing his blood sugar, giving him insulin and doing what a mama pancreas does.
This other mother came for the first few minutes, then left and went home, before returning near the end of the party, which was when I spotted her.
I hadn’t seen her in a while, so I went over to say hello.
“You stayed the whole time?” she asked with a tone of disbelief.
“I had to,” I replied. 
“Why?” she asked, looking perplexed and seeming as if no one in her right mind would stay for the entire party.
“Because of Jack’s diabetes.”
“Couldn’t the nurse have handled it for you?” she questioned. “Or, wait a minute, why can’t he handle this all on his own now?”
“He’s not there yet. He still needs help. The nurse and his teacher are both great, but the nurse is at school and we’re at a park. And, the teacher can’t administer an insulin injection. Plus, the kids were divided into groups, and the teacher was roaming the park, going from group to group, so she couldn’t keep her eyes on him. Not only that, but with the heat, the excitement and the nonstop activity, I was concerned Jack would go low, and I needed to give him an insulin shot for the pizza and the Gogurt and the popsicles the kids were served.” 
“Geez, that’s a pain,” she replied. 
“I have this neighbor,” she continued. “He has diabetes really bad. I mean really bad. He has this thing that’s implanted under his skin to give him insulin. His wife’s a nurse, and she’s always getting mad at him. I’ll see him out in his yard, and he’ll be all woozy, looking like shit, and I’ll think, ‘Dude, you’re 42 or 43 years old, haven’t you learned to control this by now?’”
“Did she really just say that?” I thought. “She clearly knows nothing about this disease.”
I attempted to seize the opportunity to educate. 
“There is no control with diabetes,” I explained. “It’s a disease that you can manage, but not control. You can try to control it, but sometimes, no matter what you do, you will end up too high or too low, which is probably what happens to your neighbor when you see him woozy.”
“Yeah, one time he had a seizure,” she said. “His wife had to take him to the E.R. and I got stuck babysitting their kids. He thought he was going to die.”
“Seizures are a real threat with diabetes. It’s a serious disease. It can be managed, but it’s a challenge. I’m sure that seizure scared the heck out of your neighbor. He may be doing everything right. He may take great care of himself, but even so, he can still go low or high at any time, and he can still seize.” 
“Well, it was nice talking to you. Have a great summer!” she said, ending the conversation, obviously hearing enough from me at that point and disinterested in hearing more.
I was done with her, too. 
The conversation, however, disturbed me for the rest of the day. I couldn’t stop thinking about it. Her judgment and lack of empathy astonished me. She is ignorant and yet so critical. 
I realize diabetes isn’t a part of her life. I don’t expect her to know much, if anything, but I also don’t appreciate such a harsh tone and judgmental remarks. A little—just a little—empathy would be nice.
I run into people like her all the time, and they stir my emotions. 
They give me reason to defend my son and others, who live with diabetes.
They make me want to shield Jack from their opinions and criticism and protect his emotions.
And then, after my irritation subsides, they compel me to raise awareness. 
They motivate me to keep talking about type one. 
They encourage me to continue fundraising for JDRF.
They inspire me to tell the “real” story and share the dark side of diabetes. 
They perpetuate my desire to serve as an advocate for all and a mentor for the newly diagnosed.
They remind me to never give up.

Tuesday, May 24, 2011

951 vs. 156


"Mom! Mom! Come here!" Jack yelled. "I just tested my blood sugar, and my meter says nine hundred and fifty one!"
He's a funny boy, who thinks he can pull a fast one on his mother.
Love my little joker!

But, I'm not that gullible!


Post edit: 
I wrote this post last month. As I participated in Diabetes Blog Week and wrote about other topics, it's been patiently waiting to be posted. In the meantime, Meri of Our Diabetic Life wrote a fantastic post about the dangers of this meter with its potential for misreading numbers. You can read her post here.

Friday, May 20, 2011

The Mask



A couple of months ago, Madeline told me that she needed arts and craft items in order to make a mask in school. She said her teacher told her to gather things that we already have at home, not to buy anything. 
I let her go through our art supply cabinet and figured she’d take the standard stuff: beads, feathers, glitter, sequins, pompoms and so on.
A few days later, she told me that she’d made her mask, but that I’d have to wait to see it until Evening Under the Stars, the annual celebration of art and music at the kids’ school.
Last week was the big reveal at Evening Under the Stars, and boy, was I surprised. 
Can you guess why? Anything stand out?
Look closer.


She incorporated an insulin syringe cap into her design, and if I do say so myself, it worked well on her mask.





Wednesday, May 18, 2011

Oops!

The other day I was laughing at Jack. Today, I’m laughing at myself. I have a story for you that would have been perfect for blooper day during Diabetes Blog Week.
Today was a hectic, go-go-go kind of a day. There was no time to stop and think.
We ended the afternoon with the endocrinologist for Jack’s quarterly appointment.
We were sitting in an exam room, chatting with the endo, when Dex beep-beep-beeped, alerting us to a possible low.
So as I listened to the doc talking, I opened the D kit to grab Jack’s testing supplies.
And I discovered we had no test strips with us! 
Oh, yeah, that’s right! NO TEST STRIPS! Zero, zip, zilch, NADA!
I had brought every frickin’ meter we own, so the doc could download all the data. I had brought the lancing device. I had brought the CGM. I had brought insulin, syringes and two different types of alcohol swab packets. I had brought glucagon. I had brought water, juice, fruit snacks, glucose tabs and glucose gel. I had brought back-up batteries for the electronics and extra needles for the lancing device. I had even brought iPod Touches to entertain the kids. 

That D kit was stocked!
Yet, somehow, I had left the test strips at home! I NEVER leave home without test strips. 
Today, I did, and where were we? At an endo appointment, the most embarrassing place in the world to make a mama pancreas mistake! 
Was that a dumb move or what?!
We keep extra supplies in the car, but I was mortified. I could not believe the kit was devoid of strips. I was not about to announce my oops to the endo, excuse myself and run to the car.
Since Dex told me Jack was 68, I pretended to have my act together and just handed Jack a glucose tab.
Five minutes later, Dex went off again. Beep, beep, beep!
“Do you feel low?” I asked Jack.
“Nope, not at all,” he replied.
“CGMs are great, but they’re not always accurate,” the doctor reminded me.
So I ignored the CGM and continued talking with Gregg and the doctor.
Of course, a few minutes later, Dex beeped some more.
“Why don’t you just test him?” Gregg asked me. (I was holding the D kit. Otherwise, Gregg probably would have just tested Jack himself.)
I gave Gregg “the look,” you know the “Shhh! Not right now!” look.
But Jack forced me to fess up, when he asked, “Yeah, mom, shouldn’t we test? I'm kind of feeling low now.” 
At this point, the conversation with the doctor stopped, and the room suddenly grew silent, as everyone waited for my answer.
“Well, I would, but would you believe we have no test strips with us?” I admitted, feeling more embarrassed than I did in the 7th grade when, doing push-ups in P.E., I accidentally farted.
“What?” Gregg asked in disbelief.
“Oh, yeah, I brought everything a child with diabetes could possibly need, but test strips.”
“Well, at least we’re in the right place for test strips,” Gregg laughed.
Our wonderful endo then jumped up, opened a cabinet, found an unopened sample box of Freestyle test strips and handed it to me without saying a word. He spared me. He’s a jokester, our endo. He knows us well and likes to tease us. I was sure he would have some snarky comment for me, but he kept quiet.
I still wanted to die of embarrassment. Of all the times to leave test strips at home!
At least Jack’s A1C was decent!

Tuesday, May 17, 2011

Who am I?





It is Evening Under the Stars, the annual celebration of art and music at my kids’ school.
I walk into Jack’s classroom, and I am told, “Look at all the portraits on walls. Then, guess which one is mine.” 
I scan the room. I look at the drawings. I glance quickly at the handwritten text beneath the drawings, not long enough to read any descriptions. 
I instantly recognize Jack’s handwriting, and without reading, I know which portrait is his. I confirm my guess when I look up at the drawing and notice Jack’s trademark “upside-down question mark” nose.
“This one is yours!” I say.
Jack beams. “How did you know?” he asks, as I read his description.
“Because I know you that well and I recognize your handwriting,” I say with a smile while tousling his hair.
• • • • • • • • • • • • 
Between you and me, let’s be honest here. 
Yes, the handwriting and the upside-down question mark nose instantly gave it away, but I had to laugh. 
You think something else might have given it away? 
My son is a smart cookie, often scary smart, but as he would say to me, DUH!
Out of more than 100 students in the second grade at his school, there is only one — Got that? Only ONE! — who fits this description: “I am a 2nd grade student with diabetes...”
Actually, out of more than 1000 students in the entire school, he is the ONLY ONE with diabetes.
How could I not have known which was his? 
Too funny!
Not only did Jack humor me, but he delighted me as well with the second part of the sentence: “...and I enjoy my life even if I have diabetes.” 
Love that! 
Love my funny boy!
(And, just so you know, he also pleased me with: “I am a person who loves tennis.”) 

Sunday, May 15, 2011

Diabetes Blog Week: Day 7 - Step Outside the Box

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I'm participating in Diabetes Blog Week, a week in which bloggers create daily posts revolving around a set topic. Thank you Karen from Bitter-Sweet Diabetes for starting this awesome idea last year and continuing it this year!

Today’s topic: Wildcard - Step Outside the Box
“Take your diabetes thoughts and instead of blogging about them as usual,
push yourself to express them in a different way today. Make a vlog.
Create a piece of D-Art. Write a poem. Draw a cartoon. Post a collage. 
Anything goes - as long as its outside of your usual bloggy comfort zone.”








I am not one to write poetry. 
Letters, press releases, marketing materials, newspaper articles, magazine feature stories — yes. 
Poetry — no.
It's just not my thing. Though I do enjoy reading it.
On Thursday night, I attended the annual arts open house at my kids' school, and I was presented with a beautiful haiku that Madeline had composed.  
That got me thinking about the "step outside the box" wildcard topic, and I decided to give haiku a try.


I got on a roll and wrote several. 
Happy, healthy boy
Living life to its fullest
With diabetes
Pale, weak and wobbly
Fifty five the meter says
Another low strikes
No outward signs show
An invisible disease
Diabetes is
Enough already
For type one diabetes
A cure is needed
Share, support and learn
Blogs, Facebook and Twitter too
The D-O-C rocks
Seven set topics,
Two wildcards, many bloggers
Awesome D blog week

Saturday, May 14, 2011

Diabetes Blog Week: Day 6 - Saturday Snapshots

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I'm participating in Diabetes Blog Week, a week in which bloggers create daily posts revolving around a set topic. Thank you Karen from Bitter-Sweet Diabetes for starting this awesome idea last year and continuing it this year!

Today’s topic: Saturday Snapshots
“Inspired by the Diabetes 365 Project, let's snap
a few more d-related pictures and share them again.”





Two Days

Friday, May 13, 2011

Diabetes Blog Week: Day 5 - Awesome Things - Meeting Bret Michaels

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I'm participating in Diabetes Blog Week, a week in which bloggers create daily posts revolving around a set topic. Thank you Karen from Bitter-Sweet Diabetes for starting this awesome idea last year and continuing it this year!

Today’s topic: Awesome Things
“What awesome thing have you (or your child)
done BECAUSE of diabetes?”




We met Bret Michaels! 
Taping a segment for his reality show, Bret Michaels: Life as I Know It, Bret visited T1 kids at our local children's hospital, and we were invited to be there.
We even made it onto the show. We didn't end up on the cutting room floor. Of course, we only got a few seconds of show time, and you need to look carefully to notice us.  But who cares! It's still a thrill!
At the beginning of this clip from the show, you can see Jack, Gregg and me, when Bret walks into the hospital cafeteria, waving to the crowd, saying "Thank you for being patient. Hello everybody! How y'all doin' tonight?"
We had waited for about three hours to meet him. That was three very long hours, but it was so worth it.
We were blown away by Bret's grace and humility. He made a point to greet every person in that hospital cafeteria. He shook hands. He smiled for photos. He signed autographs.
Fans brought posters, magazines and more for him to sign. We had nothing! How's that for poor planning? 

So I did what any resourceful D mama would do. From Jack's D kit, I pulled out an alcohol swab packet and had him sign that!

Jack Rock On! - Bret Michaels






An awesome thing indeed!

Wednesday, May 11, 2011

Diabetes Blog Week: Day 3 - Diabetes Bloopers

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I'm participating in Diabetes Blog Week, a week in which bloggers create daily posts revolving around a set topic. Thank you Karen from Bitter-Sweet Diabetes for starting this awesome idea last year and continuing it this year!

Today’s topic: Diabetes Bloopers
“...share your Diabetes Blooper
- your 'I can't believe I did that' moment
- your big 'D-oh' and let's all have a good laugh together.








I needed to buy glucose tabs. I was in a store, searching the shelves. I couldn't find them. They weren't in their usual spot.
So I walked up to the pharmacy counter, and I asked, "Excuse me, can you please tell me where the blucose tablets are?"
Yes, I said blucose! Not, glucose with a G, but blucose with a B, the way my five-year-old does!
I'm sure my face turned red with embarrassment.
The pharmacy tech was kind enough to ignore my oops and point me in the right direction.




Tuesday, May 10, 2011

Diabetes Blog Week: Day 2 - Letter Writing Day - Dear FreeStyle

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I'm participating in Diabetes Blog Week, a week in which bloggers create daily posts revolving around a set topic. Thank you Karen from Bitter-Sweet Diabetes for starting this awesome idea last year and continuing it this year!

Today’s topic: Letter Writing Day
“Whomever you choose as a recipient,
today is the day to tell them what you are feeling."










Dear FreeStyle,
We love your test strips. We really, truly do. Yes, sometimes, we cheat on you when we get freebie OneTouch strips, but you're our fave. You're the one who stocks our supply cabinet. You're the one we buy month after month.

We love your pointy, tiny tabs that wick blood lickety split. We love that you never give us an Error 5. We love how little blood you need. We love that there's no messing with codes. We love the little light at the end of our FreeStyle meter that helps us to test Jack's blood in the dark. We love your FreeStyle Promise Program.

You rock, FreeStyle! You da bomb!

But we have a little question for the powers that be: when you redesigned your strips to their current state of awesomeness, why did you have to include your butterfly?

Now, we have nothing against your logo. We like butterflies.

But, you know, when you're a typical seven-year-old boy, you'd rather have no design on your strip than a butterfly.

It's kind of embarrassing to pull out your girly strip at school. Kids can be cruel, you know.
Remember your old design, the one that just said FreeStyle? Here, let me show you.



We liked that design. We miss that design. As the saying goes, newer isn't always better.
We happen to be liberal folks. As parents, my hubby and I don't buy into all the male-female specific stuff. As adults, we don't care what test strips look like. Functionality means more to us, and you, FreeStyle, have got that down!
But not everyone is as open-minded as we are. There's a whole lot of gender scripting and stereotyping going on out there in the world, and it's tough to fight it when you're a kid.
Diabetes is difficult enough as is. Test strips shouldn't make it worse. Test strips shouldn't carry the potential for teasing and embarrassment. 
Maybe with your next redesign, you could come up with something more gender neutral? Please, pretty please with a FreeStyle on top!

Thanks for your consideration.

Love you,
Heidi







Monday, May 9, 2011

Diabetes Blog Week: Day 1 - Admiring Our Differences

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I'm participating in Diabetes Blog Week, a week in which bloggers create daily posts revolving around a set topic. Thank you Karen from Bitter-Sweet Diabetes for starting this awesome idea last year and continuing it this year!

Today’s topic: Admiring Our Differences
“Pick a type of blogger who is different from you
and tell us why they inspire you – why you admire them
– why it’s great that we are all the same but different.”




Okay, I’ll admit it. I’m hooked on blogs written by adults living with T1D.

I have a different perspective than these bloggers. My pancreas works just fine. I read as a mother, whose beloved boy has diabetes, and as such, I gain tremendous insight from these bloggers.

While I hope there is a cure, if not in my lifetime, then in my son’s, I’m not holding my breath. I believe my CWD, child with diabetes, will grow into a PWD, person with diabetes.

So to me, reading these blogs is like looking into a crystal ball. I get glimpses of Jack’s future. Sure, treatments and technology are bound to be different in 20 years. Even the artificial pancreas project will probably be old news by then.  But most likely, Jack will still have to negotiate the world and live his  adult life with this disease.

I do not ever want diabetes to get in his way. So I feel encouraged when I learn that bloggers are furthering or completing their education, contributing professionally, getting married, having babies, running marathons , traveling the world and following dreams. And, quite honestly, I find comfort in reading about everyday activities, like making dinner, changing diapers, running errands, packing suitcases, enjoying hobbies and going to concerts, because it is those activities that make life whole.

Reading these blogs is also akin to reading an advice column. Often, PWDs will reflect on how their parents handled their diabetes or what it was like to grow up with diabetes. I learn what they think was good and what was not-so-good. There is a ton of general parenting books out there, but in comparison, a scant number of books on parenting a child with diabetes. The adult bloggers fill in the gap.

I want to raise a happy, confident, well-adjusted son. I want him to thrive with diabetes. I want to parent him well. I want to provide him with the best possible childhood and then let go when he’s ready for me to let go.

The PWDs give me guidance. They give me knowledge. They give me hope.