Diabetes in the "Wild"

This past Sunday morning, hubby and I decided to take our girls for a special breakfast. Despite the stolen hour of sleep, we woke up "early" (for me anyway) and took the girls to Cafe du Monde for some delicious beignets (fried dough sprinkled with powdered sugar -- the yummy goodness in my blog title photo)...and a Mocha Au Lait for me! For those that might be wondering -- yes, Charlotte can and does eat beignets...powdered sugar and all! They're a "special treat" so it's not something we indulge in often, but we've learned to SWAG the insulin bolus pretty accurately...an awesome accomplishment if I do say so myself!

Pic from a Cafe du Monde breakfast with the cousins in May 2011

Occasional weekend breakfasts at Cafe du Monde are something our family has done since I was just a wee one...and a tradition Jay and I have continued with our girls! These trips are usually pretty uneventful...but this one was a little different. As we were paying for our breakfast another young family enter the cafe...I immediately noticed that one of their children was wearing a 2010 JDRF Walk to Cure shirt. Of course, I quietly pointed it out to my family...I'm pretty certain that at that point Charlotte began to internally groan at me, but she managed to tolerate my excitement from this "D in the Wild" experience without any outwards signs of annoyance. In true D-mama fashion, I also did a quick scan of each family member for obvious signs of D (a pump or visible meter case) but with no success...so I "let it go" figuring that their D-connection was maybe just a friend of this boy. 

We continued along on our way, taking our food and choosing a table. We sat down, Charlotte checked, we SWAG'd her bolus and started eating without another thought....until that family sat down at the table kitty-corner to us. When they sat down, I could see in my peripheral vision that the mom and daughter were involved in an exchange all to familiar to Charlotte and I. I saw the little black case pulled from the mom's purse and out came the glucose meter and lancet...the "shunk" and "beep" followed quickly! I tried hard not to be too obvious as I watched this interaction...although hubby would tell you I wasn't very successful. I noticed that there was bit of discussion and then a quiet scramble as mom went to take a peek at the boxes of beignet mix and then searched on her phone what I have to imagine was an app like Calorie King for the carb count for the beignets. At that point I wanted to leap from my chair, introduce myself and share our beignet SWAG information with them...it took a tremendous amount of restraint for me not to do it -- but I didn't. I wanted to start up a conversation with them....ask them if they lived near us, how old their daughter is, when she was diagnosed, what type of insulin she was using, what their biggest D challenges are, etc...but I knew I would just end up embarrassing Charlotte (and quite possibly this other little girl). So I just sat back with my family, enjoyed my breakfast, and thought how seemingly ironic (but incredibly wonderful) it was to have this "Diabetes in the Wild" experience in a place full of such sugar-coated goodness!

D-Mamas (and PWDs) are like Boy Scouts

Always prepared...

Last night (actually 2 weekends ago since this post has been sitting) turned out to be a "shining" example of why I try to always follow the Boy Scout motto, "always be prepared". What started out as a visit to Charlotte's Am-maw and Paw-Paw's house for dinner and to watch a football game could have ended in disaster if I hadn't been prepared for the unexpected.

After the girl's gymnastics class on Saturday morning we headed back home for baths before our planned trip across the lake for the evening. While Charlotte was in the tub I was busy checking her pump and supplies to make sure we would have enough for the afternoon trip (and then some). I was happy to see that she had a good 2 day supply of insulin still left in the cartridge on her pump...but her meter/supply bag was pretty bare. I started throwing in all of our usuals (alcohol swabs, lancets, a new container of test strips) and then a new infusion set and a couple boxes of Nerds (Charlotte's latest preference for treating lows). I'm sure when I was finished it looked as if I had packed her up for a 3-day vacation rather than just an evening across the lake.

Once everyone was finished with their bath and a quick lunch we piled in the car and were off. And as every fun girls trip requires, we took a side trip to the mall for a little fun shopping before arriving at our intended destination.

We spent the evening with Am-maw and Paw-Paw. Enjoyed a delicious dinner and a nail-biter football game! At half-time of the game I loaded up my crew with plans to head straight back home. I pulled out the driveway, but didn't get too far before realizing I had a flat tire! It was LATE and there was no chance of getting the spare put on in a reasonable amount of time....so we stayed put for the night. To be honest, I was less than thrilled that our outing had turned into a "slumber party"...but my girls were thrilled.

I did a quick scan of Charlotte's supplies and was relieved that I had re-stocked with the extras...I knew that we'd be good (supply-wise) through the night and next day until we could get back home.

Of course, D never seems to play nice and insisted on making things more complicated. We had some lows through the night...but nothing our "extra" juice boxes and Nerds couldn't handle. Morning came quickly...and Jay came to "rescue" us! The spare tire was put on and back home we went...but not before enjoying Am-maw's special pancake breakfast!

Had this D-mama not been prepared with the extra supplies, our unexpected "slumber party" would have been a lot more stressful...and cost more than just the set of new tires!!!

Our WDD Celebration

Yesterday (November 14, 2011) was World Diabetes Day! Charlotte and I celebrated with matching endocrine appointments...mine for my thyroid and hers for T1. I was a little nervous about what her A1c was going to be since things had been beginning to decline over the past 2 weeks. Her pump and Dexie downloads looked good, but I still just knew that our quarterly "report card" would be one I wouldn't want to show off. So when I called and got the update from my hubby as I was leaving my appointment I was ecstatic! Charlotte did GREAT! She's growing on target (both height and weight)...and her A1c dropped just over 1 point since her Spring visit!!! I couldn't believe my ears! We worked hard to get those numbers in target as best we could....and we did it! I know there will always be room for improvement and we will keep working to lower her A1c a little bit further, but I was thrilled with the result!!! I have to give partial credit to Dexie since she's made our basal tweaking less of a guessing game...but I gotta give Charlotte (and my D-mama self) a pat on the back too!!! We worked hard and totally rocked it this quarter!!!!

World Diabetes Day 2011 - New Orleans, LA

So to celebrate last night, Charlotte, her little sister and I went and got Jr. Frosty's for dessert (Charlotte's request)! And her dad took a drive into the city and took a couple of amazing photos of the Mercedes Benz Superdome all lit up in BLUE!!!! Truly an incredible sight to behold...and an awesome way to end such a wonderful day!

Same-Same

A little same-same for NDAM
(so wishing those tubes were blue)

About 5-1/2 years ago I was searching for information about diabetes and stumbled into the DOC (diabetes online community). To be exact it was Kerri's blog, Six Until Me, that I happened upon. I was hooked immediately...after having my little girl diagnosed just a few months before it was intriguing to get to peek into the life of another person living a healthy, normal life despite a long-standing diagnosis of T1D. Until then, I didn't really know anyone else who had T1. It gave me hope to read about Kerri's life and how she was successfully handling the challenges of D in her day-to-day life. I peeked through her Blog Roll and came across a few others that interested me and would read from time to time. But I was a "quiet reader" rarely commenting on posts...until about 2 years ago when I started finding and reading more blogs written by other parents of CWD. When I came across the first blog written by another parent I felt like I'd struck gold...it was like reading a story that someone had written just for me! With each new blog I found I'd scour through the archives feeling more and more validated as I went...finally a sense of "same-same". I'd always felt connected somehow when reading the other blogs, but the blogs written by other parents pulled me in deeper. There was an immediate sense of community and although I hadn't actually met these other D-mamas and D-papas I felt like I'd known them for years!

About 9 months ago, I decided to write my first blog post...I figured it was time for me to give back to the DOC what they'd been giving to me for so long. And although I've admittedly been a slacker lately, it's been a lot of fun to share our stories...and cathartic at times. I've been pleasantly surprised by support I've received back so far...the DOC is an amazing place!

I wish I'd really delved deeper into the DOC earlier after Charlotte's diagnosis. Goodness knows I could have certainly used some of Reyna's "colorful" stories about mother-birding or Meri's posts about her swelly brain (it's nice to know I'm not the only one with that issue). Knowing that I have felt this way, I've shared info on some of my favorite bloggers with several moms of newly diagnosed children. I ran into one of the moms a few weeks back and she mentioned to me how appreciative she was that I had talked to her about the DOC...she told me she had been "talking" with a particular blogger and had said how my pointing her in the direction of the DOC had really made a difference to her! And I've had a couple other D-related emails from people thanking me for sharing our story and telling me how it's helped motivate them or made a difference in the way they've approached something. It gives me that "warm fuzzies" to know that I helped make a difference to those people....and to know that the DOC is out here helping to provide the much needed "same-same" to other families living the daily grind with D!

More Reasons to Celebrate...

If you read my post from yesterday, you know that not only did we celebrate Halloween but it was also Charlotte's 6th diaversary! We had a great day...Charlotte had her Fall festival at school and spent the evening trick-or-treating! We were exhausted by the end, but it was well worth it! Only, guess what...we've only just begun our celebration!

Today begins yet another celebration...it's the start of National Diabetes Awareness Month and there's a lot going on! We're kicking it off with T1 Day and the start of the Big Blue Test! We'll be participating in these events in addition to the 2011 JDRF Walk to Cure Diabetes (in less than 2 weeks) and lots more I'll be posting about throughout the month! We really hope you'll join in all the fun too and help spread awareness about Type 1 diabetes!

Charlotte wearing her blue next to
Dinosaur the Diabetes Awareness Flamingo

Don't forget to...Think Blue. Wear Blue. Fridays in November. We're starting early and wearing ours today too (I tried to get a pic this morning, but it was clearly too early for a nice smile)! Happy T1 Day and Happy Diabetes Awareness Month!!!!

Celebrating Six Years....

Today marks the 6th anniversary of the day Charlotte was diagnosed with Type 1 diabetes. Yep, that's right...she was diagnosed on Halloween!

Charlotte just a few days after her diagnosis
November 5, 2005

Thinking back to that day I realize the emotions and harsh reality of the news hit me all at once as I sat there in the pediatrician's office, just me and Charlotte, watching the blood sugar number pop up on the meter...little did I know at the time that it would be the first of many (over 17,000 for her now...but whose counting). The number that flashed on the screen was over 460mg/dl. I honestly can't recall exactly what it was...I think I just mentally blocked it out as some sort of defense mechanism...but I immediately knew what it meant without anyone needing to say a word. I remember feeling overwhelmed as I sat there in that little room calling my husband to let him know that we were being sent to the hospital and asking him to meet us at home so that we could grab a few things first and drive together. And I remember trying to keep it together as I called our family, my supervisor at work, and Charlotte's daycare to let them know what was going on. After that it's all pretty fuzzy except for a few details.

Fortunately, we had some much needed comic relief on our way to the hospital...although I'm not sure it was as funny then as it is now. To this day I still laugh when I think that somehow we knew we were headed to the hospital across town and had a vague idea of where we were going (and directions from the ped), but actually drove right past our interstate exit and into the next state over (just a few extra miles) before realizing we were "lost".

Once we got there we were registered and brought straight to our room. I remember how sweet our nurse was when she came in and brought a cute little pumpkin lantern for Charlotte's bedside table. That Halloween night was supposed to have been a big deal for Charlotte. I had made her little witch costume (it was oh-so cute) and it was going to be her 1st time trick-or-treating. So, as minute a detail it may have seemed to the nursing staff, that little lantern meant a lot to us...it was like giving us a little bit of our special Halloween back!

Within a short time after being admitted, we met our endo (whom we adore) and began the whirlwind education that all newly diagnosed families receive. Over the next few days we learned to carb count, how to calculate and draw up insulin, check a blood sugar, and give our tiny little girl her shots. Once we demonstrated that "we had it figured out" and Charlotte was stable, we were released home...I'd be lying if I said I felt ready to do it all on our own. I remember wondering how we were going to manage to keep our precious girl alive (let alone healthy)! I won't lie...it isn't easy. And I agree with Hallie...it doesn't get easier...you just get better. There have definitely been bumps in the road along the way...and we've had our fair share of diabetes bloopers. But we have gotten better and we've made it through these past 6 years relatively unscathed.

So  tonite we're going to celebrate! Charlotte will dress up in costume (as a witch, nonetheless) and we will go trick-or-treating! And for those that may be wondering....yes, she can do that...in fact, she'll even eat a couple of pieces of her loot when she gets home - we'll just have to check her sugar before, count the carbs and give her some insulin if needed. We're going to do that not just because it's Halloween...but to celebrate another year that we've made it through and Charlotte has lived to the fullest despite diabetes!

Some nights it hits hard

Tonite just after bedtime Charlotte came out of her room and said she felt low. As usual she was accurate...Jay helped her check and she was 58 with insulin from dessert still on board. We gave her a juice box and 2 glucose tabs and sent her back to bed. It (treating low blood sugar) is a routine that isn't uncommon around our house lately...and I hate to say it's one I've become pretty numb to over time.

Jay and I stayed up and watched a movie. Once it was over, I went in to check on Charlotte one more time before going to sleep.

I walked in the room...my two precious girls snuggled up together. I leaned in with a sigh of relief to see Charlotte's chest with a steady rise and fall. I touched her back...her skin was clammy. As I pulled her hand toward me to check her sugar she mumbled something. It sounded like she said "low" to me...as I lanced her tiny finger I asked her what she said, but she had already drifted into a deep slumber. I held my breath as the meter counted down. Those 5 seconds felt like an eternity...but ended in relief as the screen flashed a good bedtime number back at me.

I started back to my bedroom as usual...but along the way it hit me...hard! I thought to myself how is it that just a few hours earlier we were giving Charlotte the juice and tabs to keep her from dropping too low...essentially saving her life...and then just carrying on as usual. How is it that I just went to check on my little girl to make sure she was okay...still breathing and not having a hypoglycemic emergency...and now I'm headed off to bed???

It hit me right in the gut. What if tonite her meter was off and she really was low...and she slips away. I know it's a reality...it could happen just like that...in an instant. It could happen despite all the precautions taken and doing everything "right". It happens to other families. It could happen to us.....

It hit me hard tonite that for the better part of the past (nearly) six years I've put this stone wall up around me trying to keep our "new normal" normal and routine even though it's far from it.

So here I lay typing this post....thinking of it all...grieving the loss of our "normalcy" once again....but still resolving to wake up strong in the morning to "carry on as usual" for my precious girl.

JDRF's Children's Congress, Part 2: The Most Amazing 3 Days!!!

One month ago (June 20, 2011), Charlotte and I began the most amazing 3-day journey! After spending our morning strolling around The National Mall, we headed back to the hotel for the official registration for the JDRF 2011 Children's Congress. From the moment we stepped to the registration tables, we were greeted by the friendliest, most enthusiastic people and felt so welcomed! We got ourselves signed in and received a bag with our folder, name badges, shirts, and other goodies...including a Build-A-Bear rabbit that Charlotte named "DC Bunny"!  Charlotte was so excited to see so many other kids checking in with their families...and she made fast friends with two of the sweetest little girls ever (Avery from New Jersey and Sydney from Idaho)!!! And from my perspective, being around so many other D-Moms and D-Dads was incredible...and it was truly amazing to be in a room with around 300 people who all truly "get it"!!!

Sydney, Charlotte & Avery

Our first day was lots of fun! After registration and a quick lunch with Sydney and her mom (Shamae), we were back for song rehearsal, state delegate photos, and then the Welcome dinner! The delegates did a great job rehearsing the "Promise to Remember Me" song with Crystal Bowersox. Charlotte had the opportunity after the song rehearsal to meet Crystal and get a quick picture taken. I have to say, Crystal was really down to earth and so nice with all of the delegates. And it totally made Charlotte's day when she gave Crystal a set of Mardi Gras beads (which we brought to trade with the other delegates attending CC) and she put them on right away and still had them on later when we saw her for the state delegate photo!!!

Charlotte & Crystal Bowersox -
check out the Mardi Gras beads :)

The Welcome dinner was amazing too! We were officially welcomed to the event by Stephany and Ellie Shaheen (Chair Mom and daughter), Jeffrey Brewer (JDRF President & CEO), and Aaron Kowalski, PhD (Assistant Vice President, Treatment Therapies). And while they were all quite impressive, I think I was most moved by the introduction of each of the child delegates...I don't think there are any words that can truly capture how I felt as I watched and listened to over 150 children from across the country (including several international delegates) share their name, state, and age of diagnosis; it was compelling to say the least!

Charlotte & Sydney...and the most AMAZING D-art...
the portrait above was made by a delegate's father from
1 year's worth of her used test strips

Charlotte and I were so pumped up from all of the day's excitement we could hardly sleep! We woke early the next morning and started our day with breakfast followed by the Town Hall: Role Models with Diabetes. Charlotte had the amazing opportunity to hear from Associate Justice of the Supreme Court, Sonia Sotomayor...she spoke candidly about her diagnosis and how living with Type 1 diabetes has influenced her life. The 2nd panel for the Town Hall consisted of celebrity guests Dr. Nat Strand (winner of The Amazing Race), Gary Hall (swimmer & Olympic medalist), Carling Coffing (professional golfer), Kendall Simmons (former NFL player for the Pittsburgh Steelers), and Dr. Aaron Kowalski (JDRF research scientist). Each of these celebrities answered questions about their experiences living with Type 1 diabetes and how it's impacted their lives and how some (who were diagnosed later in life) were told that they would not be able to achieve (what they have now) because of diabetes. It's been interesting listening to Charlotte talk about the Town Hall. I thought at her age she might have gotten fidgety and not really listened, but I was clearly wrong about that! It seems that she did, in fact, listen intently and walked away from the event having learned that, despite her diabetes, she really can do anything she puts her mind to...a great lesson for everyone!

After the Town Hall we attended our Hill Blitz Training session and then enjoyed our Sponsor Luncheon before heading out to Upper Senate Park for the amazing (albeit, incredibly hot) Song Performance! The delegates were joined by Crystal Bowersox as they performed "Promise to Remember Me"...it was a great ending to another incredible day!

A very sweaty Charlotte & Avery
after their song performance

Our final day began very early...but there was no time for being tired! We had a quick breakfast, picked up our scrapbooks to bring to our meetings and headed out to Capitol Hill (with the other Louisiana delegate and her mom) for our meeting with Senator David Vitter. Charlotte's other meetings were with with Congressman Steve Scalise and Senator Mary Landrieu. The focus of the meetings was to encourage our members of Congress to join the Diabetes Caucus if they hadn't already and to get them to sign on a letter urging the FDA to expedite the outpatient research guidelines for the artificial pancreas. Charlotte's meetings with our members of Congress went well and I left each of them feeling satisfied that her story and message were heard!

Charlotte and Congressman Steve Scalise

Following our meetings, we attended a Senate Hearing: Transforming Lives Through Diabetes Research. We listened to powerful testimony from Kevin Kline, Griffin Rodgers, MD with the NIDDK/NIH, Charles Zimlicki, PhD with the FDA, as well as 4 amazing Children's Congress delegates (Caroline Jacobs,Jack Schmittlein, Kerry Morgan, and Jonathan Platt). I believe Charlotte was most intrigued by the testimony of Kerry Morgan and her experiences participating in clinical trials, including an inpatient trial with the artificial pancreas. Charlotte has shared with me that she would love to have even one day, as Kerry described, without having to worry about blood sugars and carb counting! I'm hopeful that she'll be able to have many of those days....perhaps not right away, but I'm determined to keep pushing until it happens!

Charlotte and I walked away from our experiences at Children's Congress feeling inspired and empowered! We're excited about our experiences and the impact we made during our visit to Washington DC! Our journey in DC may be over, but we know our work has really just begun! We can't stop now...so we've signed up for the 2011-12 Promise to Remember Me Campaign. We will continue meeting with our Members of Congress and working hard to make a difference! And one day Charlotte (and everyone else living with Type 1 diabetes) can experience carefree days without worries of blood sugars, insulin and carb counting...and one day they'll all be able to say that they had diabetes!


***Disclaimer: Charlotte was selected as a delegate for the 2011 JDRF's Children's Congress. JDRF paid for our air travel as well as our hotel accommodations and some meals during the 3-days of the Children's Congress events. JDRF did not ask for me to blog about Children's Congress...I just chose to since it was such an incredible experience! 

JDRF's Children's Congress, Part 1: Before the Official Events

It's taken me a few days since getting back home from Washington DC to sort through all of my thoughts to try and put this post together. I think I've finally come to the realization that I can't possibly squeeze everything into one post...so I'm splitting it up into a couple of posts. So to start off, here's a recap of our 1st 2 days in DC...the Saturday and Sunday before all of the official Children's Congress events began.

On our way to DC!!!

Last Saturday morning seemed to take forever to arrive and came too quickly all at once....we'd been waiting for this day to arrive for months! Charlotte was so excited to travel to Washington DC for JDRF's Children's Congress!!! She couldn't wait to fly on the plane...the last time she'd flown was just a few months before her diagnosis at the age of 2. I was a little anxious about security and travelling with all of our D-supplies, but everything went really smoothly. Our bag of supplies made it through security without question. Our only "hiccup" was that Charlotte beeped going through the metal detector (both going and coming back home) and ended up getting the official "pat down"...the TSA staff was great with her though and made it as quick and non-stressful as possible. It wasn't until after going through security on our way back home that I finally realized she was beeping because of the metal clip she was wearing on her pump, oops...lesson learned for the next time we travel! Our flight was on time and went smoothly...hardly any turbulence at all! Charlotte really enjoyed flying...and I was glad to have her Dexie on her and working well for our flight to DC. Her blood sugar stayed pretty steady, but did drop at one point and I was able to catch it before it got to be an issue! I'm sure she got tired of me asking "What's Dexie say?", but having never flown with D I just wasn't sure how her blood sugar might be affected.

Charlotte at the Washington Monument

After getting settled in our hotel room, Charlotte and I decided to wander out and explore the area. We walked a few blocks and saw the Washington Monument...and had a bit of an adventure trying to get a glimpse of the White House. It was around 5pm or so and the area behind the South facade of the White House was already being fenced off for the evening...so we got as close as we could and snapped a few pictures. As we started walking back toward 15th Street, we were forced to make our way through a big muddy area in the field. We managed to stay pretty steady and upright, but Charlotte was none too thrilled when she ended up with mud in her sandals and between her toes. So after that adventure we headed straight back to the hotel to wash our feet (and shoes) and then go grab some dinner.

Sunday morning we woke up early and started off on a new adventure. We explored the Newseum for the better part of the morning, then off to the National Gallery of Art and National Museum of American History.  Charlotte was really impressed by the American Flag...and I think she enjoyed the First Ladies exhibit too (one of my favorites)! But even with all of the amazing sights to see and things to do, Charlotte was most eager to get back to the hotel...she knew that one of her new friends, Avery, was supposed to check-in at the hotel on Sunday afternoon and she couldn't wait to finally meet her!

Incredible view from the 6th floor
balcony at the Newseum

By mid-afternoon, I decided we'd done enough sight-seeing and agreed to head back to the hotel. Once we got back and all freshened up, Charlotte insisted that we head down to the hotel lobby to hang out and wait for Avery and her family! I ended up recognizing them on their way in and we finally met in person! The girls were a little shy at first..but we decided to meet up for dinner that evening to give them a chance to get to know each other a little better.

Instant friendship!!!

Charlotte and I had a GREAT time at dinner with Avery and her family! It was so nice to spend time with another mom who "gets it" and a family the "same" as ours! Charlotte and Avery really seemed to hit it off at dinner...they were so cute whispering secrets to one another and just being silly girls! Diabetes was present (as always)...and was what brought our families together...the girls knew they were the "same", but it went unspoken and took a back seat for the night!

After getting back to the hotel, I asked Charlotte if she enjoyed our dinner with Avery and her family. She looked at me as if I was crazy and told me "Of course, mom!" and followed that up by telling me that it felt "awesome" to not be the only one checking her blood sugar before dinner! The delight in her voice and in her eyes when she shared those words warmed my heart! Words can't begin to express how much something as simple as that means to me! I'd been told that our trip to JDRF's Children's Congress would be an amazing experience...little did I know! This opportunity gave both Charlotte and I so much more than I could have ever imagined!

Stay tuned....Part 2 of our Children's Congress experience to come later this week!


***Disclaimer: Charlotte was selected as a delegate for the 2011 JDRF's Children's Congress. JDRF paid for our air travel as well as our hotel accommodations and some meals during the 3-days of the Children's Congress events. JDRF did not ask for me to blog about Children's Congress...I just chose to since it was such an incredible experience! 

Charlotte's Top 10 List -- Diabetes Blog Week - Day 4

Blogger ate this post, so here it is again. Sorry that your comments were lost, but I read them all and thank you for them :) 

Today is Day 4 of the 2nd Annual Diabetes Blog Week! Today's topic is Ten things I hate about you, Diabetes: Having a positive attitude is important . . . but let’s face it, diabetes isn’t all sunshine and roses (or glitter and unicorns, for that matter).  So today let’s vent by listing ten things about diabetes that we hate.  Make them funny, make them sarcastic, make them serious, make them anything you want them to be!!


For today's post, I thought it would be fun (and most appropriate) to let Charlotte provide her list...since she is the one actually bearing the brunt of this beast and all. So without further ado...here's Charlotte's list:

1.   Being interrupted from the things I'm doing to check my sugar
2.   Getting a new pump site every 3 days (and sometimes sooner)...but at least it's better than shots
3    Getting a new site for Dexie...but I like her a lot once it's in
4.   Having to pee on a test strip to check my ketones....cause the blood ketone strips are too expensive!

5.   Having to go to the hospital and get an IV sometimes when we can't get my sugar to behave at home...at least the nurses are nice though :)

6.   Not being able to think when I'm feeling low
7.   When people call it "Di-a-beet-us"....now that just sounds silly!
8.   Being embarrassed by Dexie's alarm going off in the library (or other quiet place)...and people asking if it's "the bell"
9.   People asking if my pump is a cell phone...c'mon really, have you ever seen a cell phone with tubing coming out of it!!!!
10.   People telling me about how someone else "had" diabetes....don't they know that there isn't a cure yet???

Diabetes Blog Week - Day 3: Stepping out of the box

It's Day 3 of the 2nd Annual Diabetes Blog Week! Today's official topic is Diabetes bloopers....and although Charlotte did share a couple with me (including one serious gusher which ended up staining her classroom ceiling...oops!) I just didn't feel I had enough to say about them. So instead, I'm pulling out the wild card and "Stepping outside the box". Today I wanted to share with you a special piece of artwork....created by my 4 year old daughter, Amelia.

Charlotte and her "D-stuff" - by Amelia

For those of you not familiar, or those who just have difficulty interpreting 4 year old artwork. This is a portrait of Charlotte (see Charlotte's name there at the top...although it looks like this might have started out with the intentions of Amelia doing a self-portrait and then having a change of heart, lol). Charlotte is surrounded by some of her D-stuff on her side...if you look closely you'll see her pump, meter with a test strip (which looks a little too knife-like, in my opinion), a juice box, and her "diabetes bag". And on the other side is "04" which Amelia has informed me is Charlotte's sugar....ummm, perhaps we need to teach her to write more 3 digit numbers (preferably those in the low 100s). And finally, like any great artist, Amelia has signed her work (at the bottom).

I know to some this may not seem like anything special...just a child's drawing. But I see more than that. I see it as Amelia having drawn a picture of her sister and all the things she knows her "sissy" needs in order to stay healthy and safe. If you've ever met Amelia, you know that she is a caring and sensitive little girl who loves with her whole being. She and her sister may fight like cats and dogs at times...but when she proudly presents me with a piece of art like this, it helps to reinforce that she does really care deeply about her sister and that she is becoming one of Charlotte's greatest advocates and supporters!

Admiring our Differences....Diabetes Blog Week 2011 - Day 1

Today kicks off the start of the 2nd Annual Diabetes Blog Week!

The topic for the day is: Admiring Our Differences; pick a type of blogger who is different from you and share how they inspire you and why you admire them!

I first found the DOC in 2006, about a year after Charlotte was diagnosed with T1. Not sure what I was trying to search for, but I somehow stumbled upon six until me ...and I was hooked. Until that time I didn't really know any adults living with Type 1...and I had no idea what sort of impact T1 might actually have Charlotte's future. Although, there were many people who were "happy" to tell me all about the grim future that was in store for her...there were several people who were happy to discuss with me how sad it was that my little girl (yes, she was only 2 at the time) would never be able to grow up and have her own children...um, thanks! And I even had a "lovely" (eyes rolling to the back of my head) Case Manager from our insurance company tell me how Charlotte would ultimately end up losing her kidneys or legs before adulthood if I didn't get her blood sugar under control quickly (this was told to me within 2 months after her diagnosis during her "honeymoon" phase...I can only imagine what she'd have to say to me now with some of our glucocoastering we've been dealing with recently). So, clearly, finding Kerri's blog and reading through her posts was a welcome change from the doom and gloom that was being spouted off to me on a pretty routine basis.

More recently, I've also found a few other adult bloggers with T1... K2 at Diabetesaliciousness, Valerie at the dLife, and Kim at Texting My Pancreas. Each of these awesome ladies has something a little bit different to offer...yet each gives me hope that, despite the many challenges D will throw her way, my little girl will grow into a confident, healthy adult able to do whatever it is she so chooses.

As a D-mama, being able to read through the blogs of adults with T1 is invaluable. Charlotte is still young and might not be able (or willing) to express to me how D makes her feel, physically and emotionally. So being able to get even a glimpse into T1 from the person's (rather than parent) perspective has helped open my eyes to things that I may not have realized could be (or is) a concern of hers...and I imagine that this will be even more true as she gets older! These folks know D inside and out and to hear what they are thinking and feeling lets me know what my little girl might likely be thinking and feeling...and what might be in store for her down this long road ahead!

The little things....

A few months ago, Charlotte received a special gift from a very kind-hearted person. We have no idea who the gift-giver is...but I imagine that she/he must be experienced with Type 1 and clearly knows that often times it's the little things that make the biggest difference.

When Charlotte opened her gift she was beyond excited to find the most precious heart-shaped leather case for her meter and testing supplies (from Myabetic)...and was even more tickled when she opened the case and discovered that it turns into a butterfly! 

 Charlotte asked, almost immediately, if we could move her testing supplies from her old case to the new one...of course, I couldn't resist! She loves carrying her pretty little case with her when we go places on the weekends and after school! And I love that it has more pockets and elastics than her previous cases and it holds nearly everything she might need for her D to spend a day away from home...all in one adorable little bag!

I'm always looking for ways to help make Charlotte's d-management a little less dreary (not the easiest of tasks). We have a few different meter/supply cases (although none nearly as precious as the Lovebug). We've gotten a few different pump skins for her insulin pump (she's a big fan of the pink/purple "swirl") and tried out Groovy Patches to make her pump sites more "fun". And I can't forget the adorable pump pouches we've gotten from Amy's Too Sweet Boutique...the adorable fabrics and designs FAR exceed my previous seamstress attempts (although my sweet girl still sometimes requests an old pouch I made for her).

It seems that lately Charlotte has been feeling that D is a miserable "chore". She's clearly annoyed by having to check her sugar and "dial up" a bolus to correct her sugar or cover her carbs and she'd much prefer for anyone else to handle these tasks for her (can't say I blame her for feeling that way). So to help keep the D-burnout from taking it's toll already (only 5 years in to the d-life with many more ahead -- unless we find a cure) I'm happy to help out with these tasks. But when I'm not around to help out or she simply chooses to do them on her own its nice to know that having a pretty little bag or "fun" pump skin helps make these tasks a little less "chore-like"...and that's important!

It's truly the little things that make a difference!

A lesson in empathy

Last week my girls were off of school for Mardi Gras break. Despite the challenges of balancing a full-time work from home job and taking care of both girls we had a lot of fun...and the week brought a few very special moments!

Charlotte's little sister, Amelia, is an amazing little girl! She has a BIG heart and is definitely the most loving and compassionate 4 year old I've ever known! Don't get me wrong she's definitely had her share of meltdowns and temper tantrums...several of which have been real doozies! But Amelia has also had to deal with more than most little girls her age...she's never known a life without diabetes in it; Charlotte was diagnosed just 11 months before she was born.

Amelia's vocabulary already includes words like diabetes, ketones, glucose, and insulin. And watching her play with her baby dolls is very different than watching her classmates doing the same...her version includes things like blood sugar checks and pump site changes. And her artwork even includes elements of diabetes...

Amelia's portrait of Charlotte and her "diabetes stuff" 
(meter with test strip, pump, juice box, and supply bag)

Amelia looks up to her big sister, Charlotte, so much and wants to be JUST like her! On a few occasions over the past few months she's grabbed one of Charlotte's pump pouches and has insisted on wearing it. Well, last week that wasn't enough...she wanted a pump too. Charlotte was pretty excited about this and made her "a pump" to put in the pouch...and I took this opportunity to provide a lesson in empathy. All day Amelia proudly wore one of Charlotte's Too Sweet pump pouches and her new "pump" complete with "tubing" (made from curly ribbon) secured with a Groovy Patch. I also grabbed one of Charlotte's old meters for her to "check her sugar" throughout the day each time Charlotte checked.

It was quite an experience for Amelia...and I think she learned a lot (at a 4 year old level). Her "pump tubing" did get caught on things and got pulled out several times...so she quickly got tired of it and took it off after a few hours. But she remained faithful and wore her "pump" and carried her meter for the entire day. I used that opportunity to explain to her how it might be fun for her to "play diabetes" and be just like her big sis, but that Charlotte can't just take off her pump and tubing whenever she feels like it and it isn't really fun for sissy. I think it was a good lesson for her ...and I know Charlotte really enjoyed having another T1'er in the house for the day.

Even at such a young age, Amelia is a great advocate for her big sister. She's always wanting to help out with JDRF walk stuff or our lemonade stand (which we do in conjunction with our Town Garage sale to raise money and awareness for T1)...and she enjoys wearing her Walk team t-shirts and talking about what she knows about diabetes. I'm not sure that Charlotte fully realizes it, but I see Amelia becoming Charlotte's biggest cheerleader!

I have great relationships with both of my sisters (I'm the middle of 3 girls). So I was thrilled when Amelia was born and knew that Charlotte would have a sister to share things with the way I have with mine. Only I had no idea then how T1 would influence and strengthen their bond as sisters!

Both Charlotte and Amelia are truly amazing and special little girls. I am truly blessed to have them both in my life and be a witness to such pure sisterly love!

Disappointment and Determination

This past Thursday morning was pretty hectic here...not only did we have Charlotte's quarterly endocrine appointment, but it was also school picture day. Knowing we had a lot to take care of, I woke up a little earlier than usual (which if you know me, you know this took quite a bit of motivation on my part) to get our morning routine done and out the door on time. Girls up and fed - check. Lunches packed - check. Girls dressed and prettied up - check. Dog fed and pottied - check. Then off to drop Amelia at school and on our way to the appointment. Charlotte and I arrived on time and were brought to the back almost immediately...we were the 1st appointment of the day. A quick stop in the triage area for her height, weight, vital signs,and a quick finger poke for her A1c and then into the exam room to wait for Dr. P. 

The wait wasn't long, but somehow those few minutes always seem like hours. The anticipation of finding out our "grade" had me nervous and fidgety. While, in true Charlotte fashion, she just sat and played her DS without letting any of this ruffle her feathers.

As we sat waiting I overheard the nurse report Charlotte's A1c to Dr. P.


(This is what my reaction probably looked like)



What??? No way! That was not the number I was hoping for...not even what I thought it might be based on her numbers from the meter download. My heart sank and disappointment set in. I felt defeated...all our hard work was not reflected in this ugly number.

A few minutes later Dr. P came in and shared the news...he seemed fine with the number and offered some reassurance. I'm sure he could read the disappointment all over my face. He tried his best to make me feel better about the number...but I was still disappointed. We reviewed Charlotte's growth chart and he showed me how she has consistently tracked right on course. He talked with me about how just 10 years ago he would have been concerned about her having too many lows with her current A1c. We went through her blood glucose logs and made a few tweaks...more aggressive with her morning insulin:carb ratio and toned down her overnight basal rate. I shared with him that Charlotte seems a little reluctant to return to camp this summer and he talked with her about how her friends that she met last summer might miss her if she doesn't go back...I'm hopeful that she'll come around on this! All in all, while it wasn't necessarily our best appointment, it was productive.

Charlotte and I talked the whole way home. I knew she could tell that I was disappointed. So I made sure to let her know that I was disappointed with the A1c, but absolutely not upset or disappointed in her. I told her that I am proud of her for becoming more independent and involved with her care over the past few months. And I explained that sometimes things aren't going to go how we want them to despite all our best efforts...and that sometimes D is just unpredictable. I let her know that sometimes we will get knocked down...but when this happens we get back up again. And most importantly, I told her that I love her more than she can imagine...no matter what her number is!

I'm trying hard to get over my disappointment. But I'm having a hard time with it because I feel like in some ways I've failed my little girl. I know that the higher her number, the higher her risk for complications later on in life. She's been battling this for just over 5 years now and she has many, many more years ahead of her....so I want to make sure that we do the very best we can to keep her as healthy as possible!

I'm hoping that in the next few weeks we can get Charlotte started on a Dexcom trial. With this new tool in our pocket we'll be able to see what's going on between her checks...and we'll be able to be a little more aggresive and really fine-tune her basals.

Charlotte and I have decided that we're going to kick D in the behind! We're determined! We may have been knocked down on Thursday, but we weren't out for long! I've got our "game plan" in place...and we're moving forward!

Sleepover

A few weeks ago, Charlotte came home from school with an invitation to a friend's birthday party. She was so excited about it that she could hardly contain herself...it seemed she couldn't grab the invitation from her school bag to hand to me fast enough. As I scanned the invitation, my eyes were almost immediately drawn to the words "sleepover"...hesitation and concern began to set in. This wasn't Charlotte's 1st sleepover invitation, but for one reason or another the previous invites didn't work out (even before taking diabetes into consideration). Up to that point, Charlotte's only sleepovers had been with her grandparents'...and even with those I've worried -- despite knowing that she's in capable hands. We've had a few bad (and at least 1 horrendous) nights with those sleepovers despite having done everything right...persistent lows requiring frequent blood sugar checks and giving juice after juice into the wee hours of the morning to try and keep her from totally crashing. Needless to say, the mere thought of her at a slumber party was making my stomach do some serious flip-flopping.

After settling my nerves and talking it over with Charlotte, we were able to reach a compromise. I told her that she could go to the party...but staying the night would depend on her bedtime blood sugar. She said she was okay with the decision. But I knew she wanted more than anything for me to tell her she could go and stay overnight without any conditions attached; and I wished more than anything that I could. Stupid D...always there waiting to spoil something for my little girl!

In the days leading up to the party, I played out all sorts of scenarios in my head about how the night would go and I did my best to prepare. I called the birthday girl's mom and talked with her about my concerns and how Charlotte's D would be handled for the sleepover. Fortunately, she was already aware that Charlotte has D and was willing to help out however she could to make the sleepover work for us. Talking things through with her helped ease my concerns and made me feel more confident that my little girl would be well taken care of for her night away!

Finally, the sleepover night arrived...woohoo! Charlotte was psyched and ready to go well before party time! When I dropped her off we did a quick assessment of the food and drinks being served, checked her sugar and bolused her for the carbs she planned to eat...and of course I had a quick chat with the mom too. Charlotte assured me that she knew the drill...to check her sugar and call me before the cake and again at bedtime. I was hesitant to leave, but I knew she wanted me to go so that she could be like the other girls. So after a couple of hugs and kisses I was on my way back home.

The night seemed to linger on between her phone calls, but everything went great! She remembered to call each time as planned without fail and was able to tell me her blood sugar and deliver her boluses without any problems. The next morning when the phone rang and I heard her little voice on the other end of the line a huge wave of relief washed over me. She made it through the night just fine. I could tell that she was excited to have had a night where she could be just like all the other girls!

Looking back I'm glad that I didn't let my "Nervous Nellie" tendencies keep me from letting her go. I know things may not always go as smoothly as they did for this sleepover, but my little girl has taught me that she can be trusted to make good decisions and take care of herself independently (with a little help over the phone from mom)! And I'm thankful that for a change she was able to go to a party and (for the most part) be like all the other girls...and just have fun!

Dreaming...

Eight years ago, when we found out I was pregnant with our first child, my husband and I were overjoyed! We immediately began planning for our new addition...and of course, we started dreaming of what life would be like with a new baby! Fast forward 9 months and our beautiful baby girl was born! Our dreams of a happy life with this precious little person had become reality! Our home was now filled with tiny baby stuff and the sweet sound of her little coos, squeals, and giggles! Our hearts were filled with love! This new life was everything we had dreamed of and more!

As she grew from the tiny little baby into a sweet and imaginative toddler, she began to have her own dreams. Like many other little girls, she dreamed of being a princess. She spent her days playing dress up and pretending to be Cinderella, Belle, and Sleeping Beauty! Then just a few months after her 2nd birthday she was diagnosed with type 1 diabetes. Her carefree life and dreams were now interrupted by frequent finger pokes to check her blood sugar, waiting for her meals and snacks to be carefully measured out to determine the carb count, and being stuck multiple times each day for her insulin injections...all of this now a necessity in order to survive. We couldn't help but wonder why...this was definitely not part of any of our dreams!

Our experiences over the past 5 years have definitely changed our dreams! Our little girl still dreams about being a princess and we still dream of all the special moments to look forward to as she gets older...but these moments look a little different now. So...we have another dream now...a BIG dream! Our dream is that one day these moments won't have to include blood sugar checks, carb counting and insulin. Our dream is for a CURE to be found for type 1 diabetes!

Fortunately, we know that this dream can come true! A cure for type 1 diabetes is a very real possibility within our little girl's lifetime! So while we're waiting...we'll continue to do our part by sharing our story and raising awareness about this disease and the need for its cure!