2013 JDRF Children's Congress: Day 1

You know you're at an event for people with Type 1 Diabetes when...

All the sodas are diet.

Randomly standing in line at Starbucks, chatting it up with Crystal Bowersox...

Performing the JDRF Promise Song with our old pal, Crystal...

Most of the video is boring stuff...you know...lining up, pictures, blah, blah, blah.

The action with Crystal starts around the 32:40 mark, and they run through the song twice.

Also, yes, I cried.

Meeting long-time bloggy friends...

Hallie and Sweets from The Princess and the Pump!!!

And wearing Miss America 1999's crown...

She even put on her glasses for a picture after I thanked her for taking the time to take part in the AMAZING VIDEO our friends organized for Sugar last year.

The day ended with a banquet dinner, and each delegate walked up on stage to introduce themselves. I was overcome with emotion, listening to each of their voices...each individual, each story, each journey.  I looked around the room and saw so many families who live with the same challenges and frustrations...but also the same joys and victories. 

Tonight I'm going to sleep with Addie's picture beside me. She will never have a chance to attend a Children's Congress session herself...

I will carry Addie's memory in my heart forever.

No child should die of diabetes.

Stay up to date on the 2013 session of JDRF Children's Congress by joining me on Facebook, Twitter, and Instagram.  You can also follow #JDRFcc13 on Twitter.  Be sure to tune into the *LIVE* town hall session on Tuesday (7/9/13) from 10am - 11am (EST) via the JDRF Advocacy YouTube Channel. Additionally, you can catch a special committee hearing on Wednesday, 7/10, at 2 pm.

Together we will change the world...let's cure this thing!

14 Units.

That's how much insulin was left in her pump when I realized we were on the other side of the country without a vial to refill it.

Wait.

Let me back up for a second...

Last week, Sugar and I flew to DC for the 2013 session of JDRF Children's Congress (which, by the way, begins TODAY -- stay tuned!)  We arrived a few days early to spend time with my two younger brothers on the Delaware shore. I hadn't seen them since our move in 2006...suffice to say I was anxious to reconnect with them.

Sidenote: That cutie with the dark hair on the left is single.
Okay, he'll kill me for that, but I'm his big sister and this is my blog.
Also, I'm sure I will delete this once he sees it.

We had a wonderful time. As I write this post, I can honestly say that I truly understand why being "Aunt Wendy" to my brother's three children is such an awesome blessing. I fell head-over-heals in love with my niece and nephews. I don't think I can articulate in words the joy I experienced as I witnessed Sugar making memories with her cousins.

And who could forget Artie?

Because it's not a party without Artie!

But, alas, all good things must come to an end. We said our tearful good-byes, and my single brother drove us back to our old stomping ground, about 45 minutes south of Washington DC. 

Did I mention Artie?

We stopped to grab some lunch, and decided to have a little picnic under a tree so Artie could walk around a bit...and that's when reality came tumbling down.

I left all of Sugar's insulin in my other brother's 

refrigerator 3 hours away.

No biggie. We'll be surrounded by people who are also living with T1D in less than 24 hours. My pal Hallie is coming, and she'll bring a vial for us. I just know she will, because she gets it, and she's awesome like that.

Don't freak out, Wendy. Everything is fine.

FINE FINE FINE!!!!!

"Mom? I only have 14 units left."

Or so I thought.

Fourteen units wouldn't be enough to make it another 24 hours.

We needed to find some insulin ASAP...on a Sunday...far away from home.

We could do this.

We headed to the local Walgreens to see about an emergency refill. Which sounds like a perfect plan until they advise you that they don't have Apidra in stock. 

And neither did the next closest store.  Or the one after that.  Or any of the CVS stores, the Rite Aid stores, or the local Target.

I posted about our dilemma on Facebook, and the DOC sprung into action.  Offers from people who would drive as far as it would take to meet us half way, phone numbers from strangers offering to help, a million messages of love and support, calls for help on other status updates, twitter cries for insulin...

Suddenly I didn't feel so alone and so far away from home.

We found what seemed like the only 2 vials of Apidra within a 75 mile radius, so we hightailed it up there.

But they were closed for lunch.

By this time, poor Artie was struggling in the heat, not to mention that he recently had a knee reconstruction and his leg was bothering him after several hours in the car.  I had no idea how long he would end up sitting in the parking lot waiting, so I called an old friend who said she'd come pick us up and hopped in her car without a second thought.  

(Sidenote: THANK YOU, JACKIE AND BRENDAN!!!!)

Another tearful good-bye, luggage moved to her car, and inside Target we went...

"Mom...I'm low."

47.

Could this catastrophe get any worse?

Well, I mean aside from the fact that my phone battery showed less than 20% by this time.

The pharmacy reopened, and I handed over her insurance card...

"This card is expired, Ma'am."

Apparently I never put our new cards in my wallet.

Awesome.

But it worked out, and an hour later, we walked out with 2 fresh vials of insulin.

CAN I GET A HALLELUJAH?!?!?!?!?!?!?

And the people said AMEN!

We're in DC now with a pump full of insulin, and ready to get Children's Congress started!

Stay up to date by joining me on Facebook, Twitter, and Instagram.  You can also follow #JDRFcc13 on Twitter.  There are a few opportunities to watch the events LIVE via the JDRF Advocacy YouTube Channel and you can catch a special committee hearing on Wednesday, 7/10, at 2 pm.

You've Got Mail!

She was 480 this morning.

I mean...not this morning when she woke up. She was 480 at school, before PE.

I was in my PJ's, contemplating a bowl of oatmeal for breakfast while pondering dinner. I worked last night, have some emails to return, and an Animas post to write...basically I was just getting my day figured out when the phone rang.

Throw on jeans, tuck hair behind ears, add a little blush and a dab of lip gloss...I'm seriously getting to old to make myself look "spontaneously fresh" first thing in the morning. Anyway, I just got home from changing her site and filling her pump up with new insulin.

And I'm reminded, once again, that insulin is NOT a cure.

But back to the mailbox...

We applied -- for the FOURTH time -- to attend the 2013 JDRF Children's Congress this summer. Okay, technically she was a few measly days shy of the 4-year-old age requirement when we applied in 2007, but whatever.  

2007 -- "Thank you for applying."
2009 -- "Thank you for applying."
2011 -- "Thank you for applying."

Which brings us to 2013.

I debated applying over and over in my mind. One day, I was gung-ho, and the next I wondered if it would be better to put it off another couple years. It's been harder to deal with rejection with each passing year, and I honestly just wasn't sure if either of us were up for it right now. I wavered long enough that I was left with three days to make a final decision.

Then Hurricane Sandy hit, forcing JDRF to change the deadline.

Which, basically, gave me more time to oscillate as I watched the horrible after effects of Sandy unfold in the media, while trying to escape the political climate of the 2012 Presidential Election.

Before I knew it, the deadline extension was looming, and I couldn't stagger any longer.

Either apply or don't, Wendy.  That's all there is to it.

Period.

So...we sat down together and drafted a letter.  We talked about the election and the types of powerful decisions that are made in Washington DC.  We talked about where insulin technology has been and where it's going.  We talked about the relationship between Celiac and Type 1 Diabetes.  Then we filed our application, and agreed that, no matter what, we'll keep our heads held high.

The automated email reply said we should hear confirmation by "early January 2013".

January came...and January went.

Almost.

One day late last week, I sent an email inquiring about the notification letters.  The reply informed me that our letter was being mailed soon, mentioned something about the possibility of a phone call, and apologized that more information couldn't be provided.

A call?

That's curious.

Then I read this post by Moira after it popped up on my FB newsfeed yesterday.

The letters were really on their way.

I happened to be outside when the mailman arrived.  I walked over to see if he had filled our mailbox, and that's when I saw the blue letter return address peeking out from beneath a circular of store ads.  He handed me our mail, and I picked it out immediately.

It was heavier than a single sheet of paper.

I held it up to the light.

Something was different.

I'm very familiar with the JDRF logo, and could tell something about the logo on one of the pages was different.

I handed our pile of mail back to the mailman, and told him my husband would collect it when he got home from work.

He stared at me like I was nuts, but I wanted Mr. Rose to check it out to see what he thought before sitting her down to open it...

PS  (She'll always be "Sugar" here...even though you know her real name now!)

Transforming Lives - Notes

Transforming Lives:  Diabetes Today and Tomorrow was an incredible outreach conference event sponsored by the JDRF Desert Southwest Chapter.  Today I'd like to share some of the notes Mr. Rose and I took during our conference experience:

H. Peter Chase, MD is the Executive Director, Clinical Director, Director of Pediatric Clinic, Emeritus and is currently Professor of Pediatrics at the Barbara Davis Center for Childhood Diabetes, University of Colorado.  Dr. Chase studies the use of continuous glucose monitors in youth and the development of algorithms to prevent hypoglycemia using a closed loop system and screens family members of patients with type 1 diabetes to detect those at high risk for possible participation in prevention studies.  He is the well-known author of the three most frequently used family education books using the Pink Panther character as well as over 300 research articles and book chapters.  Dr. Chase will deliver the opening keynote.

The day started with an opening keynote by Dr. Peter Chase.  Dr. Chase authored Understanding Diabetes...also known as "The Pink Panther Book".  "The Pink Panther Book" was an instrumental tool for Mr. Rose and I after Sugar was discharged from the hospital following her diagnosis in 2005.  I read it from cover to cover, highlighted many sections, earmarked numerous pages, and carried it with me in her diaper bag everywhere for the first several weeks.  It truly was the foundation for our crash course in Type 1 Diabetes management.  After coming home, I could barely remember anything we learned during her hospitalization.  Thank goodness for "The Pink Panther Book"!  Suffice to say that, for me, the opportunity to hear Dr. Chase speak was quite an honor.

• A1c target goals that he believes lead to the best chance of life without diabetes-related complications: 

1. Ages 6 years and under:  7.5% - 8.5%
2. Ages 6 years thru 12 years:  Less than 8.0%
3. Ages 13 years thru 19 years:  Less than 7.5%
4. Over 19 years:  Less than 7.0%

• Noted that DKA is the leading cause of death in people with Type 1 Diabetes who are less than 30 years of age.

• Discussed importance of not over treating low BG's, and reminded audience that a BG of 80mg/dl is a NORMAL BG.  80mg/dl requires treatment if the person is believed to be dropping further (i.e. "feeling low", other physical symptoms, or an accurate CGM reading indicating that blood sugar is dropping). Stated that a "true low" BG is less than 60mg/dl, and emphasized that everyone spends part of their day in the 60mg/dl - 70mg/dl range.

• Reported that globally the incidence of T1D is rising at a rate of about 3-5% per year.  It is believed that "something environmental" can be attributed to the rise.

• Also reported his research indicates that approximately 75% of "bad lows" occur at night.

________________________________________________________

Lauren Woodward Tolle, Ph.D. is a licensed clinical psychologist in Denver, CO.  Lauren completed her doctoral work at the University of Nevada, Reno and postdoctoral work at the University of Colorado School of Medicine. Lauren also has a Master’s degree in Applied Health Psychology from Northern Arizona University. Lauren’s research interests include evaluating clinical outcomes of evidence-based practice in primary care as well as pediatric settings.  Lauren has conducted research and published in the area of improving diabetes management and family communication for adolescents with type 1 diabetes. She greatly enjoys working with this population. In her spare time, Lauren enjoys spending time with her family including her newborn son, Liam, in beautiful Colorado.

Next, I attended "The Teen Age:  Managing Type 1 Diabetes During Adolescence".  I don't have very many notes from this session, because Tink had become restless in the KidZone and I was called out to tend to her.  (She just needed her mama for a bit...well, at least until Cherise offered up her snazzy iPhone and found a Dora show for her to watch.)

Dr. Woodward Tolle authored a workbook titled Help with the Hard Stuff.  This workbook is designed for T1 teens and their parents to work through over the course of 9 weeks.  Here's the description from Amazon:

Help With the Hard Stuff is a workbook designed for teens diagnosed with Type 1 diabetes and their parents. Living with Type 1 diabetes is difficult enough for adults, but for teenagers it adds to the already increased stress of social pressures, self-awareness, and responsibility. This workbook can help the whole family better understand basic diabetes information and important facts associated with good diabetes care. It also provides evidence based cognitive-behavioral strategies that can be helpful in facilitating health behavior changes, such as when problems arise with treatment adherence. Help With the Hard Stuff is designed to assist in making the transition in care from parent to adolescent smoother and more successful. It does this by addressing key factors that are associated with better adherence such as self-monitoring of blood glucose, coping effectively with a chronic illness, gaining social support, improving family communication. It also assists parents in learning how to provide autonomy-promoting support and provides a glossary of commonly used terms in addition to a section with resources for more information.

________________________________________________________

Gary Scheiner MS, CDE is the Owner/Clinical Director of Integrated Diabetes Services.  A certified diabetes educator, masters-level exercise physiologist and person with type 1 diabetes, Mr. Scheiner has dedicated his professional life to improving the lives of people with insulin-dependent diabetes.  Mr. Scheiner has authored four books:  You Can Control Diabetes, Think Like a Pancreas, The Ultimate Guide to Carb Counting and Get Control of Your Blood Sugar.

Meanwhile, Mr. Rose attended "Managing Blood Sugars During Sports and Fitness Activities". Gary Scheiner authored Think Like A Pancreas, another book I would consider to be one of the most helpful tools I've encountered in preparing me for the journey of raising a child with diabetes. I've also attended several of Gary's online classes through Type 1 University, and not only do I find him to be a wealth of valuable information, but he's an awesome presenter as well! 

• Optimal BG for strength, stamina, speed/agility, flexibility, safety, and mental sharpness is 140mg/dl.

• If exercising for greater than 90 minutes, small snacks should be taken without insulin coverage during the duration of activity.  (An example would be a couple jelly beans periodically while exercising.)

• Once the temperature reaches 90 degrees, insulin begins to break down, and lose it's effectiveness.

• Other variables that affect exercise:

1. Active insulin
2. Insulin site
3. What has been eaten
4. When it was eaten
5. Emotional state
6. Temperature and humidity
7. Pain/Discomfort with activity
8. Amount of activity

_______________________________________________________

Manny Hernandez heads the Diabetes Hands Foundation, a nonprofit that connects, engages and empowers people touched by diabetes through its social networks, TuDiabetes.org (in English) and EsTuDiabetes.org (in Spanish) and programs like the Big Blue Test and No-SugarAdded Poetry. Diabetes Hands Foundation offers information and support to nearly 200K people around the world every month.

Cherise Shockley was diagnosed with Type 1.5/ LADA (Latent Autoimmune Diabetes of Adults) in 2004. She is the Founder of Diabetes Social Media Advocacy (DSMA) a real-time communications resource for the diabetes community, their family members and caretakers. She is moderator of the DSMA twitter chat (diabetessocmed.com), and co‐host of “DSMA Live” (blog talk radio show). Cherise is a contributing author to “MY SWEET LIFE: Successful Women with Diabetes.” 

Bill Woods  is the founder of 1HappyDiabetic.com a website that encourages people with diabetes to live a happy and healthy life.  Mr. Woods  was awarded the 2009 TuDiabetes.org Creative Mind award voted on by the diabetic online community.   His award winning videos for “Making Sense of Diabetes” led the way in spreading awareness of diabetes through internet video creation.

NEXT UP:  The DOC: Diabetes Online Community!  HOLLA!  WOOT WOOT!  I had the honor of introducing these awesome speakers to the audience :)  And they had some pretty interesting things to share...

• Social media isn't a fad.  It's a fundamental shift in the way we communicate.  

• If Facebook were a country, it would be the THIRD largest populated country in the world.

• Together the DOC has completed and shared petitions, participated in the Big Blue Test, and battled misconceptions in the media.

• Ways to evaluate social media resources:

1. Does it agree with clinical standards?
2. Are there accessible and readable privacy policies?
3. Are there controls on sharing personal data?
4. Are there honest disclosures?
5. Are there any voluntary accreditations?

It was fun to see some familiar faces during the presentation, even though they weren't there in person... Hi Kelly, Mike, George, and Scott!

And I laughed when my Facebook page popped up there...

Anyway, the DOC session was fun to watch unfold after several conference calls spent piecing it together.  I thoroughly enjoyed every moment of the time I was able spend with my friends, and hope to have the chance to hang out with them again :)
_______________________________________________________

Aaron J. Kowalski, Ph.D., oversees JDRF-funded research aimed at accelerating the delivery of therapies that will help keep people healthy while living with type 1 diabetes, minimizing their risk for developing diabetes complications, as well as therapies that will help those who have developed diabetic complications. Dr. Kowalski is an internationally recognized expert in the area of diabetes technologies and has been a leader of JDRF’s Artificial Pancreas Project, a multi-million dollar initiative that began in to accelerate the progress toward a closed-loop automated insulin-delivery system. He has authored numerous articles in the field, including a landmark study in The New England Journal of Medicine which revealed the effectiveness of continuous glucose monitors in type 1 diabetes. Dr. Kowalski has traveled widely across North America and abroad describing diabetes research progress, and is known for his ability to translate science into easily understandable concepts.  Dr. Kowalski will deliver the keynote research update.

Dr. Kowalski delivered the closing research keynote address.  I have to admit that I didn't take many any notes as I was captivated by the oddly familiar inspiration happening inside.  I remember attending research updates shortly after Sugar's diagnosis, and feeling empowered and motivated.  Somewhere in the last few years, I lost my ability to feel those things about research and technology.  I mean, I've kept up with it, but I often find myself building a wall around my bubble of HOPE.  Rather than allow it's energy to permeate my heart and soul, I tend to turn off the switch and move on with the day-to-day grind of raising a child with diabetes.

It felt good to feel hopeful again.

Anyway, I had the pleasure of hearing Dr. Kowalski a few years ago, and remember thinking that he was so personable and easy to understand.  Sometimes "research chat" gets over my head and intimidating, but both times now that I've heard him, that hasn't happened.  I'd highly recommend anyone take the opportunity to hear him if you have the chance.

I found comfort when he discussed the Artificial Pancreas Project.
I found comfort when he discussed micro/macro encapsulation and beta cell regeneration.
I found comfort when he discussed potential vaccinations to prevent T1D from developing.

I found HOPE (again) in Treatment, Cure, and Prevention.

This is Part 2 of a 3 part series.  Stay tuned as I share my closing thoughts and personal impressions. More on Transforming Lives...


Part 1:  Transforming Lives - Overview 
Part 2:  Transforming Lives - Notes
Part 3:  Transforming Lives - Closing Thoughts