#FFL12 - Warm Fuzzies Wear Glasses

Have I mentioned Sugar's recent retinal exam?


The one she had at the 2012 CWD Friends For Life Conference?


You know...the one where I was completely fascinated by this...

Right.  That one.

Well...there was another finding we learned that I sort of glossed over.

Nothing major.  {Easy for *me* to say!}  No diabetes complications, or anything.  

Just that the doctor suspected she would need to be evaluated for glasses.

She heard him say it, and whipped her head around to look at me with panic written all over her face.  I kept a smile, and told her not to worry about it...we'd have her doctor check things out when we got home.  I didn't want to let it ruin the rest of our trip.

So...fast forward to a few days ago, when she failed the vision screening at her annual well-visit.  And then, the following day, when we got her in for an eye appointment to get a final verdict.

She was none too pleased.

"No one will think I'm pretty."

"What if someone tries to bully me?"

"What if they make fun of me on the playground because of having a pump AND glasses?"

I tried to tell her that nothing can steal her beauty.  I tried to reassure her that a bully would never be tolerated. I tried to say all the right things...  

"WELL IT'S EASY FOR YOU TO SAY, M  O  M  YOU HAVE A PERFECT PANCREAS AND PERFECT EYES!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!"

Ouch.

But she was right.

I found myself at a loss for words.  All I could do was shut up and hug her.

I posted something on Facebook -- you know -- because when a mom doesn't know what the heck to do with a situation, she turns to her friends to see if they've ever dealt with something similar.  I was looking for something encouraging to share with her, words of advice, someone to listen.

By the time we returned home from her appointment a short time later, my Twitter feed and Facebook notifications had exploded.  Soon a personal message from Tom Karlya arrived.  Reassuring comments, pictures of people with their pumps AND glasses...and chatter of Sara, Kim, and Jess collecting pictures for "a little video".

Well.  

Here.

Because I really can't find the right words to explain what happened...

 

All I can say is...

Well, I don't know what to say.  Thank you doesn't seem to cover it.

Watching it reminded me of what it felt like to be at FFL just a few short weeks ago.  The warm fuzzy feeling of community, friendship, and family.  The sense that everyone around you "gets it".  Smiling faces, silly faces, video snippets, and ROCKING dance moves {here's looking at you, Alecia}.  

I want to reach through the computer to hug each person...and each person who sent a pic that wasn't shown...and each person who wanted to send a pic, but didn't see the message in time...and each person who even thought they MIGHT have a pic to send...and each person who has watched it and commented somewhere.

Warm fuzzies.

I just want each of you to know how incredibly touched I am.  How touched WE are.

So...here's a peek of what last night looked like on our end...

I hope you can see the joy.  The unspoken words of sisterhood. 

(Also, if you happen to see a basket of unfolded laundry and shoes scattered about, just ignore them.)

Sugar takes things in quietly, and reflects on them by herself before sharing her feelings about something.  Tiara...well, Tiara is a firecracker who expresses herself with as much drama as possible at any given moment.  Tink is a comedian who finds any reason to laugh FIRST and then allows deeper emotions to emerge.

You may want to keep those personality traits in mind while you watch this.

From the bottom of our Candy Hearts...

Oh...PS...The "Beautiful" video was published on 7/25/12.  Sugar was diagnosed with T1D on 7/25/05.  Seven years of memories, thanks to insulin...and a million more memories to come, thanks to awesome friendships found in the DOC!

#FFL12 - Dr. Fasano. Onward.

"It doesn't matter how I answer that question.  No one can really ever know, and you can't go back.  You can only move forward.  She's healthy and happy.  With proper attention to her diabetes, along with correct management of celiac, she can live a long, fulfilled life.  Nothing I say will ever take that away."  Dr. Alessio Fasano

I nodded my head and looked down at my hands.  I tried to smile, but felt the familiar clutch in my chest, and swallowed hard to fight back tears.  Aside from one or two people, the room was almost empty now.  I looked up again, and thanked him for taking a few minutes to talk to me.  He smiled,  and I moved out of the way so the next person could have their turn.


When Celiac entered our world in 2008, I began searching high and low for as much information as I could find.  Along the way, I consistently came across the name of one prominent researcher:  Dr. Alessio Fasano.  For YEARS, I've kept up with the events happening inside the gluten-free (GF) community; and for years, I've valued his position on issues ranging from obtaining a confirmed Celiac diagnosis to using 20 ppm as the standard for a U.S. gluten-free labeling law.


So, when I learned that he would be presenting a session at the 2012 Children With Diabetes Friends For Life Conference, I could hardly contain my anticipation.  If I only had the opportunity to ask him one question, I already knew what it would be:

Had I known to eliminate gluten when she first began showing signs of celiac, could I have stopped the autoimmune process that ultimately led to the destruction of her pancreatic beta cells ?

And, while I wanted to hear a definitive yes or no, I've come to learn that nothing in life is ever definitive.  There are no do-overs.  You learn as you go, and do the best you can along the way. So, I suppose that, if a top-notch celiac researcher tells me not to look back, but instead to keep moving forward...then...ONWARD we must go!  He's right.  The "yes or no" answer I keep seeking is of little relevance to the life we're living.


His session was incredible.  I was completely absorbed by the information he was presenting, and couldn't seem to take notes fast enough.  Here's a list of a few things I remember:

• First of all, I'm not exactly sure where or how I thought the immune system functioned, but I was stunned by the HUGE role the intestines play through a process commonly known as "leaky gut".  When combined with an environmental trigger and genetic susceptibility, leaky gut sets the stage for a Celiac diagnosis.

• Just published in March 2012, THIS study demonstrates that delaying gluten exposure until after 12 months of age can reduce the immune response to gluten. All of my girls were exclusively breastfed for the 1st six months of their lives, and introduced to solid foods in the form of pureed fruits and veggies after that.  Their first gluten exposure was in the form of pick-up cereals and "puffs", along with teething biscuits around 7 months of age.  If I could go back (and I realize I can't), I would NEVER have introduced gluten before the age of 12 months.  I wish I had known then what I know now.

• Type 1 Diabetes and Celiac Disease share many genetic variants, while others are distinct -- read more HERE.  Of note, I wanted to share this statement...

Our results support further evaluation of the hypothesis that cereal and gluten consumption might be an environmental factor in type 1 diabetes, leading to the alteration of the function of the gut immune system and its relationship with the pancreatic immune system.

Could that be the "yes or no" I'm looking for?  Onward.

• Finally, something I found incredibly intriguing is that cesarean delivery is associated with Celiac Disease.  It has something to do with the initial bacteria introduced into the gut...operating rooms are sterile environments...you'll have to read the rest, because I can't explain it as well as the study itself.  Anyway, none of my girls were born via cesarean.

When asked if he, himself, avoids gluten, Dr. Fasano gave a little chuckle.  "I'm Italian. Avoiding gluten would be quite difficult to say the least!"  He responded that he eats gluten in moderation, and he believes it's a good guideline for everyone to follow.  Isn't that what we hear for everything?  "All things in moderation."  For some reason, the idea of eating bagels for breakfast, sandwiches for lunch, pasta at dinner, and cookies or crackers for snacks in between seems "normal" in the American diet...but, the truth is, it's too much!


There's so much more!  If you EVER have an opportunity to hear Dr. Fasano, I would highly recommend his session!


In closing, I wanted to share that both Tink and Tiara had endoscopies three days after we returned from the conference.

They've both been symptomatic for awhile, so I requested some bloodwork from our pediatrician.  The labs were negative, with the exception that they're both positive for the DQ8 genetic marker (which means they're genetically pre-disposed to the risk of developing Celiac).


As I've explained before, Sugar's celiac screenings were negative for YEARS, despite obvious symptoms.  With this in mind, we proceeded with a GI consult, who agreed that an endoscopy was an appropriate next step.


Last week, we got the call that both girl's biopsies were negative for Celiac Disease. The recommendation by both our local GI doctor and Dr. Fasano (because I had a second chance to pick his brain at the conference!) is to have them tested again if their symptoms worsen.  Otherwise, they should be re-screened prior to puberty, because untreated Celiac during that critical time can lead to a host of problems.


And so, it brings us full circle to that "yes or no" question.


Do we eliminate gluten for both girls in hopes of preventing further autoimmune disorders, including another T1 diagnosis?  Or have the cards already been played since they were both introduced to gluten prior to 12 months of age, and they both have confirmed genetic susceptibility.  


Do I impose a LIFELONG expensive dietary restriction without any evidence to support the reason?  Is that something they would really appreciate later in life?  Or, would it be an example of their mother making a reactive decision based on their older sister's experience?


It's hard to know what to do…if one/both of them were to ever develop T1, and we don't eliminate gluten, the guilt would be overwhelming. At the same time, the idea of forcing a GF diet feels like it could potentially impose a lifelong burden. And what if we do eliminate gluten, but they decide not to continue being GF as an adult of their own free will…could that cause a worse autoimmune response later? So much still unknown. 


This is when I choose to rest the burden and pray that God's plan will be honored, no matter what. I will pray for an obvious answer, and keep pressing ONWARD in moderation for the time being.


Onward.  Thank you for sharing the journey.

Good-Byes Are Never Easy.

Especially for Tiara.

Daydreaming while mesmerized by Crystal Bowersox.

She's my very sweet...but very sassy...6 year old, going on 26 year old.  She's wise beyond her years, pours her heart into everyone she meets, and gets fired up over injustice -- whether it's a situation with her sisters, or hearing about something unfair happening through current events.  She loves shoes, lip gloss, and cartwheels.  She's as passionate as they come, and ripping her heart away from something or someone she cares about is incredibly painful for her on a very deep level.

When she met Misty's Middle Little, it didn't take long before I knew the devastation that waited when the moment came to bid farewell.  Both middle sisters.  Both younger sisters to a T1 older sister.  Both older sisters to a little sister.  


They spoke the same language in their own little world.

The final hugs good-bye.

Fortunately there are ways for these Friends For Life to keep in touch...

PS...Jason and Misty's husband, Keith, connected instantly as well.  As did Sugar and Misty's T1.  Oh, and Tink and Misty's youngest hit it off too.  And...well...I've "known" Misty for several years via the old blog-a-roo here...I guess that makes it a win-win for everyone!


Let the good times roll!

#FFL12: Poolside Dex Checks.

I was standing by the pool, waiting for a group I had planned to meet when I saw a cute little family   checking things out.  After being greeted so kindly by several people during my first experience at FFL, and feeling pretty confident this family was in town to attend the conference, I approached them with a smile in hopes that I could help them feel welcome.


Before I could say anything, however, she looked at me and said "You're Candy Hearts!"


(This is always surprising to me whenever it happens, btw.  I'm honored and humbled to know our family has so many supportive friends out there...so please, please, please {!!!} feel free to say hello anytime, because we really do enjoy meeting you guys!!)


I smiled back, and asked about the two cutie-pie girls with them.  Before I knew it, one of the girls was showing me her pump and pulled out Dexcom...I swear sometimes I think all little girls are the same -- she reminded me so much of Sugar just a couple years ago.  


With Dexcom in plain sight, my new friend let out a deep sigh, and mentioned the mixed blessing that comes with all the information a CGM provides.  I completely understood.  The arrows are awesome when deciding how to proceed from one minute to the next, but then there's a punch in the gut when you see the glaring peaks and valleys.  She pushed a button, and I saw the familiar pattern of rolling hills ....... cruising up ....... and down ....... and up .......


"It's so bad.  I can't believe I'm showing you how horrible we are at managing her diabetes."


"What?  You're not horrible!  This looks totally normal to me."


"It does?"


"Yup."


"But she spikes so high, and sometimes it takes forever to come down, and..."


"Normal."


She pointed to a spike...


"Normal."


And another...


"Yup."


"But people don't ever post pictures like this!  I never see Dexcom pictures online that look like this.  I feel like I'm letting her down, and can't figure out how to fix it."


*DING DING*!!!!

Oh, my friend.  I have been there!!!  I can completely relate to the feeling that everyone else seems to have their act together, except you.  And so, because I want to reassure you that you're doing a great job, here's a few pics I dug out to prove that we have days like those too...

And, guess what?  


We aren't the only ones!!!!

• Hallie shows you her photoshopped life.
• Tracy knows all about the gluco-coaster as well.
• Abby is perfect.  That is all.
• Kim has bloopers...and she talks about a mountain too.

You aren't alone, my friend.


Pinky promise.


PS (I'll be adding more links as I find them, so feel free to stop by again!  If you have a related post, please leave a link in the comment section so I can add it!)

Real Life.

Just about 7 years ago, I watched as my 2 year old daughter was loaded into the back of a helicopter for transport to the PICU.  I can remember the pounding in my chest as my wobbly legs tried not to buckle.  I strained to see the curls on her little head before the door slammed close to prepare for take off.  I could feel the baby inside my tummy nudging around, and I wondered if I was actually capable of being anyone's mother at all, let alone a child with diabetes.


It was a raw, helpless moment.  


And it was very, very real.


Weeks turned into months, and I wondered if I was the only mother of a child with diabetes who had no idea what she was doing.  I felt as if my CWD had drawn the short straw for life or something, because her mother couldn't seem to get her act together.  Every forum I scoured was filled with happy-go-lucky parents who spoke lightheartedly about beautiful A1c's and the day-to-day management of this disease.  Meanwhile, my heart was heavy.  I worried that my daughter's fate of a life with horrible complications had already been sealed, because I couldn't make any sense of her numbers, and she had experienced far too many "bad lows" for a rapidly growing brain to withstand.


Dramatic much?  Perhaps.


That's when I started reading blogs.  I lurked and hopped from one blog to the next.  At the time, there seemed to only be a handful of blogs about life with T1D, and most of them were authored by adults who had grown up with diabetes.  Their stories helped me realize that I wasn't crazy.  Managing this beast is a relentless grind, and even the most seasoned veteran can have ruts of frustration.


It's real life.


Even still, as a parent, I was having a hard time finding other parents I could connect with on a deeper level.  I had found an entire network of amazing adults with T1, from which I was able to learn and draw inspiration from, but none of them could relate to the challenges I faced, as a mother trying to manage a growing CWD using current technology.  Insulins that peak faster and pumps that can lead to DKA quickly if something goes wrong with the site.  An insulin sensitivity factor that stayed above 250 for years, pre-bolusing a picky eater, trouble shooting patterns, birthday parties, and figuring out how to send all this hoopla to school.


Everywhere I turned parents who had already raised their CWDs were telling me to "lighten up", "let go", and "let her be a kid"...as though I wasn't already trying my darndest to do just that!  But no one seemed to be able to offer any practical suggestions, because they hadn't ever managed a 3 year old using rapid acting insulin in an insulin pump.  They could relate to being a parent of a CWD, but couldn't relate to many of the modern day challenges I faced, because their parenting experiences reflected a different era of technology.  I don't mean to suggest there was nothing to be gained from their insight, but deeper connections still seemed elusive.


And so I started blogging.


It has always been my goal to build relationships.  I have always wanted to learn more about the PEOPLE behind the stories.  I love to see pictures and snapshots from other people's lives, and I feel privileged when given the opportunity to read someone's transparent reflections about their journey.  I very much enjoy the friendships I've found through my blog, and tend to use Facebook as a way to keep up with my pals on an everyday basis.


My life is real.  Sometimes it's downright messy.  I have real emotions, and tend to care deeply about others.  It's not about page views or blog stats.  I'm not artificial or materialistic, and have no desire to make a million dollars off my daughter's busted pancreas.  (Well, unless, of course, that million dollars could be used to support programs such as Life For A Child.  I guess then I'd go for the gusto.)


Building relationships.  That's why I'm here.  That's why I started blogging.  I knew there were other mothers out there who were just like me.  It took some time, but eventually I started to find them...one by one, and I'm still finding them.  Along the way, I've found some heart-to-heart connections with PWDs that I'd consider irreplaceable, and I've been able to learn a thing or two from the parents who traveled this road before me.


This is real life.


So, anyway, when I had the opportunity to attend the Friends For Life Conference, it meant more to me than just attending sessions and gaining insight from renowned resources.  It meant real life hugs and conversations.  It meant introducing my girls to the children of people I've come to love as if we've known each other forever.  It meant strawberry-mint mojitas and laughter and deep breaths shared within a common bond of understanding.


I like to keep things real over here.  In the coming days, I'll be sharing more from FFL 2012, but felt like I needed to say this stuff first.


Thank you for sharing this journey with me.

Friends For (a) Life(time)

In the amazing Bloggy World, a week has passed since my last post...and now we're home.

I had great intentions of posting an update every day, yet here I am.  A week later.  Part of the problem was that I was relying on my smartphone for a connection, but seemed to have some trouble while in the conference center.  The other challenge I had was that I was trying to take full advantage of the free wifi offered in the hotel lobby...and...well...

It's hard to be online when so many online pals are in the same place with you offline!  I admit it!  I was caught up in every moment...wandering the halls and randomly bumping into people I've only ever known as cyber pals -- but there they were -- in real life!!!  

Sugar, Sara, and Kelly Kunik (K2)

Heather, (Me), Misty, Lora, Meri, and Kelly

K2 with Sugar and Ally

The food was amazing.  The sessions were awesome.  The exhibit hall was incredible.  And I even wore an Animas pump for a few days myself!  I have lots to share...but right now I need to unpack, figure out the broken washing machine situation, and go grocery shopping.

Stay tuned!

Friends For Life 2012: The First Days.

We've never flown with all three girls in tow before.  It didn't help that Sugar was diagnosed with an early ear infection 2 days before our flight or that the washing machine flooded our laundry area - twice - while I was trying to get the vacay laundry done.


But nothing was going to steal our joy.


We were headed to the Children With Diabetes Friends For Life Conference in Orlando, Florida!

The flight was smooth, and the girls did great!  Spice's flight landed about 10 minutes after ours, and our family felt complete as we set off to enjoy her summer visit by attending this family-oriented T1 focused conference.


There have been a few immediate sightings -- Heather, Misty, Meri, Sara, Kim, Karen, Kelly, Jess, Kerri, Scott, Scott Johnson, Lee Ann, Bean's Mom, Ginger, Tim...and I'm sure there are others, but my brain is moving WAY faster than my fingers!!!!  It's weird.  To "know" these faces -- their stories, their struggles, their victories -- and then to casually encounter them in passing as if we've known each other for years.  Oh, wait.  It HAS been years.  Years of keeping up with their blogs, Facebook statuses, and (occasionally, for me at least) Twitter updates.  This evening, I was able to sneak a way sans kiddos, and headed to the lobby with my laptop to take advantage of the free wi-fi...as I was sitting here, they started trickling by after dinner...one by one, until I found myself surrounded by a dozen or more friends, most of whom I was meeting for the first time in real life.  


Anyway, Sugar had a retinal eye exam earlier in the day, and it was completely fascinating to me.  The doctor really took his time with her, and we learned that she'll probably need glasses for a slight case of nearsightedness (this has changed since her eye visit last year.).  He pointed out an area of sun damage on the back of her eye, and explained that long term sun damage can lead to cataracts...don't worry...he said everything looked normal for her age, but it was a definite reminder of why sunglasses are so important.  Perhaps, however, the most amazing part of her exam was this...

Anyway, in the days to come, I'll be updating about my very own Animas pump start, making art with the diabetes trash we brought along, and sharing information from the sessions.  Be sure to like the Candy Hearts Facebook page for some exclusive photos you'll only find there as the rest of this journey unfolds.  

Stay tuned...the fun is just beginning!


Disclaimer:  Our family's attendance at the Friends For Life Conference in being sponsored by Animas Corporation.  As I've previously disclosed, I have a contract with Animas which compensates me to blog/vlog about type 1 diabetes from my perspective, as a parent who is raising a child with type 1 diabetes.  You can find the previous posts I've written for Animas HERE.  Animas is not paying for any entertainment excursions, park visits, or mickey mouse ears for all 4 girls.