Candy Hearts Blog

It's a sweet adventure full of gluten free goodies!

Candy Hearts Blog - It's a sweet adventure full of gluten free goodies!

A Bionic Friendship: Introducing Addy and Ally

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Addy was diagnosed with Type 1 Diabetes on July 25, 2005.

Ally was diagnosed with Type 1 Diabetes on February 10, 2009.

They live several states apart, and their paths probably wouldn’t have ever crossed if their mothers, Wendy and Misty, hadn’t been active bloggers in the Diabetes Online Community. Before Facebook and Twitter began defining the landscape of social media, Wendy and Misty were seeking online support by sharing their personal journeys of raising a child with diabetes through their online journals.

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In 2010, Ally sent Addy a special little book she made about her “diabetes friends”…

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Since then, the girls have kept in touch, supporting each other via e-mail…

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And Skype…

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And, most recently, text messaging (YIKES!)…

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Addy and Ally (and their families) met for the first time in person at the 2012 CWD Friends for Life Conference

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Then again in 2013

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So, perhaps this IS a story about two girls…but it’s also a story about two families…

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Two families who have three little girls each, the oldest of whom has Type 1 Diabetes.

Two families who long for the day their girls — and every person with T1D — will experience life without the constant “basal thinking” that is necessary to survive from one glucose check to the next.

Two families who are bonded through this journey, and whose lives have been forever changed because of Type 1 Diabetes.

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This post is part of a series of updates documenting Addy and Ally’s experiences as part of a clinical trial for the Bionic Pancreas in the Summer of 2014.
Postscsript – I don’t generally use my daughter’s real name here, on the ol’ bloggy blog.
Each of my girls actually have their own cutsie nicknames, but I’m making an exception today, because putting the names “Addy and Ally” together is too sweet {pun intended} not to!
I know.
Stop laughing.
I’m really not that sappy all the time.

Going Bionic

July 25, 2014 will mark the 9th anniversary of Sugar’s diagnosis with Type 1 Diabetes.

Nine years of finger pokes, shots, pump sites, and managing insulin for every speck of carbohydrate she eats or drinks. Nine years of carefree childhood balanced with the burden of chronic disease. Nine years of trying to learn everything there is to know about an all-consuming diagnosis, while simultaneously fostering independence in constant preparation for the day she takes control of her own care. Nine years of overnight glucose checks, A1c’s, lab draws, quarterly office visits, 504 meetings, school training, and advocacy.

If you had told me, on July 25, 2005, that nine years later, the child fighting for her life in that PICU bed would embark on an experience to radically alter the course of managing Type 1 Diabetes forever…well, I would have just stared at you, blinking confused as if you were speaking a foreign language to me. Then I would have started crying (again).

But it’s happening.

Sugar has officially been placed as one of 2 eleven-year-old girls who will wear the Bionic Pancreas for five days as part of a clinical study at diabetes camp. Even better, the other eleven-year-old girl is one of her diaBFF’s, Ally! (Stay tuned — I’ll be sharing the story of their friendship coming up next!)

What is a Bionic Pancreas, you ask?

Engineers from Boston University have developed a closed-loop bionic pancreas system that uses continuous glucose monitoring along with subcutaneous delivery of both rapid-acting insulin (to lower blood glucose) and glucagon (to raise blood glucose) as directed by a computer algorithm. The bionic pancreas automatically makes a new decision about insulin and glucagon dosing every five minutes.

a and a going bionic

It’s five days of not having to think about how to respond to her blood sugar. It’s five days of running carelessly with the wind without the fear of hypoglycemia. It’s five days of enjoying food without calculating the number of carbohydrates on her plate. It’s five days of being surrounded by other children who face the same challenges, and five days of  feeling “normal”. It’s five days of going to sleep without anxiety about the “what ifs“, and five days of waking up with a glucose level in range, ready to start a new day.

It’s five days of a life Sugar doesn’t remember, and five days of a glimpse inside her future at the same time.

(P.S. I’ll be documenting our journey as much as I can, so be sure to stop by again soon! Here’s the Candy Hearts Blog Facebook Page, where I’ll be posting links for regular updates.)

About That 7.5% HbA1c Thing.

7.5

Sugar’s current A1c history… 7.5%

So…did you hear? Last week, at the American Diabetes Association 74th Scientific Sessions, the ADA announced that they are setting a new A1c target of less than 7.5% for children of all ages.

Oh wait…let me back up…

Hello! I’m Wendy.

candyheartsblog

Wendy Rose www.CandyHeartsBlog.org

I used to be an avid blogger in the Diabetes Online Community, but my life derailed about a year ago and I’ve fallen off the edge of a cliff. (Not literally, of course. But whatever. We can get to that later…maybe.) At any rate, *NEWSFLASH* — during my hiatus, my daughter’s diabetes hasn’t gone away. Nope. Not even a smidge. So, even though my online presence hasn’t been as active as it once was, I’m still paying very close attention to things like, say, the ADA making an announcement like this.

Why you ask?

Well, basically because it means my daughter’s A1c of 7.5% just went from being comfortably in the center of her target range to, suddenly, being above target, when you consider the wording used by the ADA:

The Association now recommends that children under the age of 19 diagnosed with type 1 diabetes strive to maintain an A1C level lower than 7.5 percent.

Did you get that?

“LOWER than 7.5%”

Which means our comfortable 7.5% is not lower than 7.5%…which means, at 7.5%, it’s no longer comfortable.

But I’m not stressing.

Okay, maybe I’m stressing a little…but not because I’m a perfectionist with a Type A personality. It’s not what you think. It’s not about self-loathing, or beating myself up, or seeing that number as a report card.

It’s because I know how much work it takes to achieve this, ehum, *UN*comfortable 7.5%. And I know how much work it’s taken to keep her between 6.8% – 7.5% for the past seven years.

I also know how hard it was before then, too. For the first 2 years of Sugar’s diagnosis, I couldn’t drop that number under 8.0% to save our lives. You see, she used to have horrible low blood sugars that caused her to pass out and hit her head at least twice a month, with stretches of once or twice a week. It went on for about 2 years…and it was terrifying.

Look, when you need to give 1/4u or less of insulin, but only have a half-unit marking on a syringe (at best), making sure you’re giving the correct dose of insulin is a constant guessing game. 1/4u of insulin made a huge difference to my daughter, and the smallest deviation in either direction made a big impact too. We couldn’t avoid those terrible lows without dealing with terrible highs.

(Sidenote: “High frequency of and early exposure to severe hypoglycemia during development negatively affects spatial long-term memory performance.” HERE‘s the study.)

So, here’s the thing: I’m all for this tighter target…but something has to be done to accommodate the unique needs of children dependent on insulin.

T1D is on the rise globally at a rate of 3-5%/year. The majority of those affected in this increase are kids under 5. If the rapidly growing brain of children under 5 years old are expected to achieve less than 7.5%, then a few things need to happen…

*  Micro-dosing via syringe is a must. This could mean that pre-filled diluted insulin syringes need to be made available. Both syringe and pen manufacturers are going to have to rise to the challenge so that the tiniest of doses can be administered safely.

*  ALL pumps need to offer even smaller dosing increments.

*  ALL pumps need to offer the option to program a zero basal at times (my daughter needed zero basal between 12 am – 2 am for a long time. I shouldn’t have to get up and set a temp basal every night. It should be an automatic option). On that note, ALL pumps need to offer even smaller basal rates.

*  Teaching about the correct timing of meal boluses is necessary. Stop telling parents that it’s okay to bolus after a meal. No. It’s not. Not if they need to achieve an A1c of less than 7.5% for optimal decreased risk of long term complications. How do you safely pre-bolus a picky toddler? It might mean parents need to start by giving half the meal bolus up front and the other half after the child finishes…which would also mean 2 shots at every meal instead of one. It might mean parents are prepared to use juice or milk or something else to make up the difference if said picky toddler doesn’t eat enough carbs to match the insulin that was already given. These are hard rules to implement, but less than 7.5% in a growing child isn’t a cakewalk.

*  Overnight checks and corrections are necessary. In fact, here’s an excerpt from the new ADA Position Statement regarding the recommended times patients with T1D perform Self-Monitoring Blood Glucose (SMBG)

Capture 1

There it is: “MIDSLEEP”. Yes, that means parents need to get up to test their children at night. And, if they need to give a correction, that means they need to get up a few hours later to test them again to monitor for hypoglycemia. Gone are the days of letting your little run a tad too high as a trade off for a good night’s sleep. Less than 7.5% doesn’t allow room for that. Which brings me to my next point…

*  Parents need faster access to a CGM. These little people are physiologically too small to carry on a 2 way conversation, let alone possess the ability to verbalize what they are feeling and alert someone when they need help. I wholeheartedly believe that I would have been able to catch most, if not all, of those horrible lows with a CGM. (Except that it didn’t exist, and was hardly accessible to the pediatric population when it did.)

Now, listen. If your kid is pushing a 9% or higher, I’m not here to berate you. And if your kid is cruising along at 6.5%, I’m not here to make an example of you. I’m here to say that I believe parents (and kids) WILL rise to the challenge, but technology and education will have to evolve to support the effort.

We’re in this together, my friends.

Keep swimming…and striving for less than 7.5%.

2014 DBlog Week Day 1: Change the World

blue circle on fire

Today’s topic is Change the World. Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up.

Fired up, you say?

Hmmm…let me count the ways…

I get fired up when someone suggests my parenting, or worse — my child herself– is “at fault” for her Type 1 Diagnosis. I must have fed her too much sugar or I must have not breastfed her or I must have breastfed her too long or whatever.  Nope. You’re wrong. We didn’t do anything. It just happened. Period.

I get fired up when someone suggests I pay “X” amount of money to buy some exotic herb, attend some unscientific presentation, or try some incredibly restrictive diet in order to “cure” my daughter. If I could have bought her a cure by now, I would have. If I could have implemented a diet change to fix this, I would have. If I could have done anything to take this burden from her, by now you can bet I would have done it. So save yourself the trouble. I’m not interested in a snake oil cure.

I get fired up when someone suggests the technology she uses to manage her diabetes is nonessential. She uses an analog insulin, wears an Animas Ping insulin pump, and benefits from a Dexcom continuous glucose monitor. And you know what? That stuff is freaking expensive. But it also enhances her quality of life. When she used less expensive insulin via injections, she passed out and hit her head all. of. the. time. She was just a baby and fell face first, unconscious as the result of low blood sugar, far too often. I couldn’t draw up small enough doses in a syringe, nor could I pinpoint any sort of pattern to stop those horrendous episodes from occurring. If you think it’s too expensive or a drain on insurance companies that, in turn, increase premiums, too bad. I’m not apologizing for using the tools available and doing whatever I can do to help her be happy, well adjusted, and healthy.

But, believe it or not, those are not the things that fire me up the most.

I am FIRED UP that insulin was discovered almost 100 years ago and people still DIE every day because they cannot access it.

Perhaps they live in an underdeveloped country where medical care is primitive at best. Perhaps they live in a developed country, but their diagnosis was missed by healthcare professionals who should have known better. Perhaps they are under-insured or uninsured and can’t afford their prescriptions. Perhaps any number of scenarios…the fact that a shot of insulin could have spared their lives, but they couldn’t access it hurts my heart in ways I cannot describe.

I think about it a lot. Sometimes I hold my daughters close, and feel sadness for the mother somewhere who is holding her dying child because she cannot access insulin. Sometimes I think about all the advocacy and fundraising in search of a cure and improved technology, and feel morally torn knowing people are suffering because their most basic needs aren’t being met.

This post is part of DBlog Week 2014. To read other blog posts on this topic click HERE.

Dear Tameka,

Ho.ly. Shizzzzz.

The past two years have been full of heartache in your world.

First, you lost your son, Kile, in 2012 after a he was hit by a jet ski while tubing behind a boat on Lake Lanier. Then you nearly lost another son, Usher Raymond V, last summer to pool drain entrapment when his arm got stuck while trying to retrieve a toy.

Now one of your boys has been diagnosed with Type 1 Diabetes. (You’ve probably heard by now that Usher mentioned your son’s Type 1 diagnosis on the Today Show yesterday.)

Really, Universe?

REALLY?????

Enough already.

My heart resonates with yours, because I’m also the mother of a child with Type 1 Diabetes. Not only that, I lost my older brother to suspected pool drain entrapment when I was a little girl. He was 9, and I was 5.

It’s nowhere near the same…yet very much the same.

Even though I haven’t lost a child of my own, I saw my mother’s struggle with grief as she tried to move forward, creating a sense of “normal” in the wake of my brother’s death. I fully understand the hole left in the family, where a child’s smile and laughter used to dwell…the emptiness that never goes away.

I also understand the moment you stand in shock as someone tells you that your child will die without receiving life-sustaining insulin by injection multiple times a day or via an insulin pump 24/7/365 for the rest. of. their. life. The moment you witness your child having a low blood sugar. Trying to figure out how to count every carbohydrate they eat or drink. The thud in your chest when they cry because they don’t want to be poked again. The seemingly endless pile of manuals attempting to outline how to raise a healthy child with Type 1 Diabetes.

It’s overwhelming.

Added to grief and healing over previous tragedies, it must feel downright mind-boggling at times.

I want you to know that there are many people living very fulfilling lives with T1D, along with parents who are raising children with T1D out there, and they’re happy to support you as you navigate the journey ahead. If/when you need a friend, please reach out. (Sidenote: That goes for Usher too!)

Here are some ways you can get connected:

First and foremost, check out the You Can Do This Project. Because you can. (Also, here’s my video.)

You’ll also want to check out the website www.ChildrenWithDiabetes.com and perhaps even consider making plans to attend the most amazing T1D conference experience EVER – Friends For Life 2014.

There’s a Tweet Chat every Wednesday night from 9-10 pm EST. Just hop on Twitter and look for the hashtag #DSMA (Diabetes Social Media Advocacy). You’ll find a blend of people with all sorts of connections to diabetes (Type 1, Type 2, LADA, and a few others) who share unique insights using a prompt from the moderator.

There are also DSMA live chats, where you can listen to a topic of conversation, submit commentary, and even call in to add your two cents.

There’s a slew of Diabetes Blogs out there, many that talk about life specifically with Type 1. You might be surprised at how connected you feel after reading some of their stories.

Diabetes Art Day is also a popular event in the Diabetes Online Community (DOC).

Anyway, I just wanted you to know that you aren’t alone. There’s a lot of people rooting for you, Usher, and your family.

Welcome to Type 1.

Pebbles.

I had stepped out of the office for a quick second. My shift was crazy busy, and I needed to fill up my water cup before tackling the screen full of calls waiting for me.

“Mom, Pebbles put a new site in me about an hour ago.”

Wait. What? Who?

My brain was gobsmacked for a second. Did my 10-year-old daughter just tell me her 11-year-old pal inserted a new site?

Mmmhmm. Pretty much.

Basically, Sugar’s site came out so her friend, Pebbles, put in a new one for her.

Just like that. No big deal. Whatever.

This evening, Sugar was due for a new site again (she inserts a new site for her insulin pump about every 3 days), and Pebbles offered to do it immediately.

For reference, here’s a picture of the needle…

site needle

Did I mention this kid is 11 years old? She’s not intimidated in the least by the enormity of T1D and/or celiac. Making sure her friend is taken care of is a top priority to Pebbles — even if it means poking her with needles herself.

She has learned how to check Sugar’s BG, and knows what to do if she’s low. She reads labels and counts every carbohydrate. She makes sure Sugar has her bag of supplies before they go to the park, and willingly pokes her own fingertips just because she wants to better understand what her friend is dealing with.

And that’s just for diabetes.

Then there’s celiac…Pebbles is on constant guard for gluten and happily eats gluten-free stuff so her friend doesn’t feel different. She thinks about whether or not a restaurant has a gluten-free menu before choosing where to have her birthday luncheon. She actively seeks out gluten-free snacks (and checks the carb amounts) when browsing at the grocery store, because she wants to make sure her friend always has something available when she comes to visit.

I’d be a very rich woman if I had $5 for every time an adult has told me they couldn’t do it, because…

They’re grossed out by the sight of blood, or…

Scared of needles, or…

Worried they’re going to hurt her, or…

Whatever.

pebbles

But not Pebbles.

Pebbles has stepped up to the plate to be a willing participant so she can support her friend in every way possible.

As a mom, I can’t help but to worry about each new phase of life and how we’ll fit diabetes into it. Today it’s a walk to the park. Tomorrow a school dance. Today a sleepover. Tomorrow a weekend away with her friends for the first time.

I don’t know where life will take this girl of mine…but I’m thankful she has a pal like Pebbles to help look out for her along the way.

Diabetes and the Love Nest.

jay and wendy 1999 chb

We used to look like that. True story.

The lights are low, half a glass of wine sits on the end table, the door is locked, and the mood is right.  The window is slightly open, and a gentle breeze flows through the bedroom.   After a long day, getting in the groove with the one you love seems like the best way to take all the stress away…

“MOM!!!  I’M LOW!!!”

Buzz kill.

Nothing says ROMANCE like your kid’s low blood sugar.

Or a pump that runs low on insulin.

Or a beeping CGM.

Or whatever.

Let’s face it…sometimes diabetes REALLY…ehum…intrudes.  I mean, there you are just going about your life, and it falls out of the sky:  Your child has type 1 diabetes.

INTRUDER!!!!!!

When you’re trying to sleep, but can’t stop replaying blood sugar patterns in your mind.  When you’re financial goals are altered in order to pay for diabetes supplies.  When you’re wandering from one day to the next feeling distracted by the science of balancing exercise, carb counts, and insulin…

Intruder!  Intruder!  Intruder!

So, perhaps it should come as no surprise that the ol’ D has meddled a bit in our marriage.  It started subtly.  We were planning a date night, but got hung up on finding a sitter who could manage diabetes in a toddler.

We were left to wonder if we’d ever go on a date again?

While friends were boasting about weekend getaways, and trying new restaurants; we were holding our breath to see if the pizza bolus from dinner would wreak havoc on a good night’s rest.  Household tasks went from dividing up laundry and dishes to finger pricks and site changes.  A fridge full of insulin became more important than a carton full of milk.  Conversations became centered around diabetes management decisions, and we grieved the loss of “normalcy” as we knew it.  Times of illness, the transition to school, learning how to juggle celebrations, managing our other children’s needs, prescription, pharmacy, and insurance hassles…it’s all added stress to the already stressful task of raising a family.

About two years into the journey of our daughter’s diabetes diagnosis, we faced the reality that we’d need to embrace a change of attitude if we were going to make it the long haul with our relationship.  Over the past year, we’ve had to adjust our attitudes again.

Every day requires intentional effort to avoid the “diabetes trap”.   We’ve had to fill our thoughts with gratitude for what we DO have, instead of frustration over what we don’t.   We cannot allow blood sugar numbers to set the tone in our home, and we cannot dwell on the things we cannot change.

We’re a work in progress.  As his wife, I’ve had to learn not to take things personally, and recognize that he’s working hard to provide for our family’s needs.  As my husband, he’s had to accept that there will be emotional moments when I’m feeling defeated.  Individually we’ve had to make our marriage a higher priority than anything else – diabetes included.   Together, we must find the rhythm that keeps our family afloat.

Diabetes has interrupted our life.  It’s challenged our relationship.  It’s been the root of more than one heated conversation, and it’s caused moments of division when we don’t agree.

But it’s also forced us to work as a team.  It’s helped us prioritize material things, put our lives into perspective, and see the world from a different point of view.

2014 Animas National Sales Meeting: I was there for 15 minutes.

20140131_100428

Two weeks ago, I got an email asking if I’d be willing to attend “a 15 minute meeting” in Miami today.

“A 15 minute meeting” the email said.

Sure! I’d love to attend “a 15 minute meeting” in Miami! BONUS – Mr. Rose is off on Fridays…which means the childcare dilemma would take care of itself.

#Awesome.

And so I did.

Except…when I think of “a meeting”, I imagine a group of folks sitting around a table with notepads and coffee cups and stuff.

And, yes, there was that.

But…I wasn’t sitting around the table.

More like…I was wearing a microphone and standing on a platform, talking TO a group of people who were sitting around tables with notepads and coffee cups and stuff.

I’m used to hanging out behind the computer screen. I mean, don’t get me wrong. I’ll share our story up one side and down the other from the radius my charging cable will allow, but…sharing it in front of a group (wearing a microphone, on a platform) adds a new dynamic.

For one, I cry. Yes, I’m aware it’s been almost 9 years since her diagnosis. I can’t help it. I still cry when I talk about it. I don’t know when that goes away to be honest. When I think about how sick she was…how close we came to losing her…I can’t help it. I cry. Then my make-up gets all blotchy and my nose gets all red when I cry…it’s not pretty.

But I didn’t cry today. {Thankyouverymuch!} I was talking to a group of Animas employees from all around the country. Many of them wear insulin pumps themselves, or, like me, they love someone who wears a pump. It was like talking to a bunch of old friends…a group who already knew our story and were happy to listen to me delve into it again. It wasn’t stressful at all.

Also, I’m a nurse. Look. If I could get paid for the number of times I’ve heard the phrase “Thank goodness you’re a nurse!” we’d be rich. Very rich. The world expects me to just “know” what the heck I’m doing. Standing in front of a group of people and admitting that YES I am a nurse and YES my kid went into DKA and YES I have struggled with figuring out how manage her insulin needs ever since…well…it isn’t easy. Fortunately, their faces were empathetic. They were kind. They listened. They saw me as a mother.

Finally, my words have been stuck in my head for a few months. It’s the reason my blogging has slowed down considerably. Things used to flow freely from my brain to my fingertips, but that hasn’t been the case as of late. I wrote myself some notes, and made an outline of the things I wanted to talk about…but when I tried to practice saying any of it out loud, I kept tripping over my thoughts.  If I’m honest, I was sitting there, in the final minutes before my introduction, still wondering what I was actually going to say.

I smiled, stepped up, looked around…and shared my heart. For the most part, it came out right. They smiled and laughed with me. Their heads nodded in understanding. They listened. And, when my 15 minutes was up…they stood and clapped. Almost as if they understood that I was afraid I’d cry, and I was afraid of admitting I was a nurse, and I was afraid I wouldn’t be able to find the words.

They stood and clapped.

For the first time in a very, very long time…I wanted to clap too.

We’ve been doing this for almost 9 years.

She’s vibrant and thriving.

She wears her pump day in and day out and hardly ever complains.

She is amazing.

Bravo, little girl.

Bravo.

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