Thanksgiving Thoughts

Last weekend my mother-in-law had the girls over to spend some quality time with them and to help me be able to get my grocery shopping and chores done without my "littles" in tow. During their time with Nonna they did some Thanksgiving artwork. Amelia made the traditional "hand turkey" drawing...but Charlotte decided to take things in a slightly different direction. 

I'll admit I giggled quite a bit when I first saw the picture! I'm not really sure what Charlotte had in her mind when she drew this.  My guess is that her thoughts were focused on the Pilgrim's clothing and that she prefers her colorful fashions to the "drab Pilgrim garb". Or maybe she was thinking that about the lack of technology (TV, computers, etc) back in those days. 

After my initial giggling, I actually dwelled on her drawing and statement for quite some time. And I've decided that I agree with the sentiment for a few reasons! The obvious being that I'm thankful I didn't have to set sail and journey to a new world and endure the many hardships that our early settlers endured. The maybe not as obvious...I'm thankful that I'm not a Pilgrim since living during the 1600s would have meant living before the discovery of insulin. I am incredibly thankful to live in a time and place where I have access to the drug that saves my daughter's life every day! Had we lived before 1923, Charlotte would not have survived long after her diagnosis with Type 1 diabetes...at best she may have survived a few months by following an extremely restricted diet. 

Unfortunately, there are still children in other parts of the world who do not have access to insulin. It's estimated that there are 100,000 children with diabetes around the world who are in need of assistance to access insulin. Without insulin, these children will die within 1 week. We can do something to help though. Wendy over at Candy Hearts has partnered with several businesses in a campaign to support Life for a Child. You can help save a child's life and support Life for a Child by making an investment in the Candy Hearts Collection. Proceeds from this campaign will provide insulin and supplies to children in need around the world. Direct donations for the campaign are also accepted through Hope Worldwide. 

I'm thankful that even though there may be times when things get tight for us, our family is able to provide Charlotte with the medical care needed to keep her alive and well. I hope that I can help provide the same for another family in need. 

Too Quiet???

For the past 24 hours, Charlotte's blood sugars have been great...especially compared to what we were dealing with just 2-3 weeks ago. They haven't gone much above the 150 mark and just a minor bump this afternoon with a low...but nothing horrendous! 

I figured this Dex graph needed "framing"  :)

I know should sit back and be thankful for this "break" of sorts! But I have a hunch that this is going to be like those days when both girls are home and the house falls just a little too quiet...you know that usually means trouble! That little voice in my head keeps telling me that this is quite possibly the calm before the storm...I so hope that voice is wrong! 

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!

Thankful...

This year our family will be participating in our 5th JDRF Walk to Cure Diabetes on November 12, 2011. Our family walk team has grown over the years...we've gone from being just our immediate family to a group of family, friends, and even some friends of friends. We've had many repeat walkers over the years and although not everyone is able to make it out to walk with us every year we always know that those who weren't able to make it are still cheering us on on walk day!

Charlotte, her sister and her cousins at
the 2010 Walk to Cure Diabetes

Charlotte always enjoys helping out with the walk preparations. She helps set up her walk fundraising webpage and chooses her picture that will be included in our family team letter. She helps select the song for her walk video (albeit with guidance from yours truly). She chimes in with suggestions on our team t-shirt design and provides the final stamp of approval on both the design and color. Then once all of her tasks are handled she enjoys sitting back and watching as her thermometer gradually rises. 

For the past few weeks, Charlotte has been watching patiently as the walk donations had begun picking up. She knows (especially now after having had her experience at Children's Congress this past summer) that these donations translate into money for research for better technology (like the Artificial Pancreas) and ultimately a cure for Type 1 diabetes. So she gets excited when she sees that she is making progress toward her goal and towards our team goal. So yesterday a few extra donations came in and around lunch time I noticed that she was just shy of reaching her goal. I put out a message on my facebook page mentioning that she was oh-so-close to her goal and asking for donations to help her reach it. Not much later I received an email notifying me that Charlotte had not only reached her fundraising goal, but had exceeded it. Our family has always been grateful for each and every donation we've received for JDRF on Charlotte's behalf...but as times have gotten tougher with the economy we've been even more humbled by the generosity of those who have donated. 

So...as Charlotte arrived home from school I was eager to show her her fundraising thermometer and the "fireworks" for having reached and exceeded her fundraising goal. It was obvious that she wasn't feeling well though...she was low...so my surprise was put on hold for a moment as we checked and treated. As she was downing a fun-size box of Nerds I pulled up her page and the "fireworks" went off. Despite her funk from the low, I could tell she was excited. In her true competitive nature she asked me how her fundraising compared with our other team members....she of course wants to be #1! And she wanted to know who had donated throughout the day too...she's always curious if it's someone we know personally or a friend of a family member. I shared with her the names of the new donors from the day and we talked about our plans for our thank-you cards and what we wanted to say in them. 

As Charlotte's blood sugar rose to a decent level she took off to enjoy some afternoon fun before starting on her homework and I sat there reflecting on the amazing outpouring of support our little girl has received over the past 5 years. Each year, despite the worsening economy, our team has seen growth in both team member numbers and our total donations. I don't think there are words that can truly express how appreciative our family is of the kindness, support and generosity of those that surround us. While some may dismiss their donation or walk participation as "no big deal" to our family it is HUGE! We know how valuable your time is....so the presence of each individual showing their support on walk day means the world to us! And each and every donation (whether large or small) is appreciated more than you can imagine. Every dollar donated makes a difference...each one gives us a little extra hope that our precious girl will benefit from improved technology helping her live a healthier life and will ultimately see the cure within her lifetime....and for that we are unbelievably thankful!

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.

Time Flies...

So it's been almost 2 months since my last blog post...I have no idea where the time has gone! All I can say is that it's been crazy around here lately! Fall always has a way of feeling like this to me...hopefully things will settle down by Christmas (wow...did I just say Christmas...I can't start thinking about that yet, we're not even into October)! 

For our family, the hustle and bustle started with back to school very early in August...it seems like school starts earlier and earlier every year! In addition to all of the back to school shopping we spent plenty time preparing Charlotte's emergency box and daily D kit (that she carries with her everywhere), updating emergency forms for school staff, and meeting with Charlotte's new teacher for a Type 1 "crash course"! Fortunately everything went very smoothly...we are truly blessed to have such a great school staff! Of course there's no rest for the weary around here so before the dust even got a chance to settle we began planning Charlotte's birthday party! (Talk about time flying....how in the world is my little baby 8 years old already!!!) The party with family was supposed to take place Labor Day weekend, but unfortunately it ended up cancelled...Tropical Storm Lee had other plans for us :(    So now I'm working on a combined birthday party for Charlotte and her little sister...I'm holding out hope for beautiful weather and cooler temperatures early next month!

Between the daily grind of work, managing our family and home...not to mention dealing with the highs and lows of T1...I've been getting our annual Walk to Cure preparations underway! I'm hoping that I can get our shirt design finalized by this weekend and start getting a list together of our team members and their shirt sizes (hint, hint team members).

I can't believe our walk is less than 2 months away already! Our fundraising has started off with a bang and I hope we can keep the momentum going! So with that...our family team letters will be hitting the post office this week...and our annual Walk video has finished production! So sit back and enjoy...while I go catch my breath :)

"Mommy, I Feel Low"

I should have figured...

Yesterday was a great day, with unusually great blood sugar numbers....despite disconnecting from her pump for a few hours while she played in the water. So last night when Charlotte asked for a piece of cake for dessert, I gladly obliged and simply bolused accordingly. An hour or so later as I was telling her it was time to get changed for bed, Charlotte uttered the dreaded words, "Mommy, I feel low". I asked her to grab her meter so we could check her sugar...she obliged and quickly brought it to me.

Shunk! 5,4,3,2,1...48 

Crap! As if the number wasn't bad enough in and of itself, I knew it hadn't been that long since she had eaten her cake and been bolused for it...she still had a good bit of insulin on board! I grabbed her a juice box and she quickly gulped it down. I let her hang out for a few minutes so I could keep my eye on her and make sure she was coming back up. And then just as I was getting ready to ask her if she was starting to feel a little better, she looked at me and said "I feel tingly all over"...I could read the worry in her eyes. She's had bad lows before, but she's never mentioned feeling tingly or looked worried like that. With that look and those words, panic set in. Knowing she was already really low and had insulin on board, I was afraid things were heading south quickly. I was afraid....afraid that she was about to have a seizure or pass out...or worse! I offered her a 2nd juice box, but she refused. I told her she had to have something else now...she opted for a squeezable applesauce pouch. I brought her to my bed where she sucked down the applesauce. There was no way that I was letting her out of my sight. We snuggled together as I waited for the time to pass to re-check her sugar. As we talked she told me that she'd never felt tingly before and that it scared her a little...and she also told me, "when I'm really, really low I feel like I don't know where I am" and that being disoriented like that makes her feel scared. She usually doesn't like to talk much about how her diabetes makes her feel (emotionally)...so hearing her share these thoughts and feelings tugged hard on my heart. I wanted to take her fear and sadness away! We snuggled some more and I told her that we are doing everything we can to help protect her from those kinds of lows. (Side note: we were taking a break from her Dexcom since we've had issues with losing her sensor sites when she goes swimming...Dexie is going back on this afternoon). Charlotte seemed somewhat reassured by my words. Fifteen minutes passed and we rechecked. 

Shunk....5,4,3,2,1...89

Better. But still not where I wanted her to be. Over the next two hours, I continued to check and her blood sugar continued to slowly rise. I could see her starting to feel better and she seemed reassured as she saw the better numbers pop up with the subsequent checks. Her worry gradually washed away and she drifted peacefully off to sleep. I stayed up a while longer watching and listening to her breathe...and to check just a few more times.

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! 

Beauty Shop "Small Talk"

This morning I spent some time at the salon getting my hair cut and highlighted for our upcoming trip to JDRF's Children's Congress. I figured it was just going to be some nice, quiet "me" time...no kids and no D to worry about. Little did I know...

I settled into the chair and started chit-chatting with stylist...just a little small-talk to pass the time. I mentioned that Charlotte and I would be leaving for Washington DC next weekend and she asked if the trip was for anything in particular...so I explained that Charlotte is one of 2 delegates chosen to represent our state for JDRF's Children's Congress and a talked a little bit about what we will be doing during out time there. She seemed genuinely interested in learning more about Charlotte and how her life is impacted by Type 1 diabetes...so I explained about her insulin pump, blood sugar checks and carb counting. She asked about Charlotte's diagnosis and how we knew...so I explained. I told her that Charlotte was 2 years old when she was diagnosed and that we had noticed that she had been going potty A LOT, having more potty accidents, and soaking through her Pull-Ups to the point that they would literally drip urine. I also told her how thinking back we now realize that she was drinking A LOT too.

Charlotte - 3 months before diagnosis

After listening to the story she mentioned that she has a 2-year old little girl who has been drinking a lot and soaking through her diapers. She said she had mentioned her concerns to her daughter's pediatrician who told her it was probably nothing to worry about and that toddlers go through phases where they do things like that. But she said she still can't shake the feeling that it's something more than "just a phase". I try hard to not be an alarmist...I realize that not every child who pees a lot has Type 1 diabetes. BUT...I would hate for anyone to go undiagnosed until its too late because they didn't know the signs to look for or what to do! So I shared with her some of the warning signs of Type 1 diabetes: extreme thirst, frequent urination, increased appetite, sudden weight loss, drowsiness/lethargy, and fruity smelling breath. I told her that I truly hope the pediatrician is right about her daughter's drinking a lot being a toddler phase...I hate to think about another child being diagnosed! BUT...I also encouraged her to not ignore her concerns and to have her daughter's blood sugar checked if it hadn't been already. She seemed to be truly appreciative of the information and said she is going to have her daughter's blood sugar checked.

Funny how what I thought would be a couple hours of "me" time, turned in to so much more...and how a little "small-talk" in a beauty shop might have saved a little girl's life!

Airport Anxiety

Only 7 more days until Charlotte and I hop on our plane and head out to Washington DC for JDRF's 2011 Children's Congress!!! We're both extremely excited about going, but as each day passes I seem to be getting more and more anxious about travelling.

Before you ask...yes, we have traveled with Charlotte since her diagnosis. We've just been fortunate that we live in an area in close driving distance to our family vacation destinations. The last time we flew with Charlotte was in July 2005, just a few months before her diagnosis...so I have absolutely no experience with airline travel and T1.

Being the super-planner that I tend to be (with most things), I started our packing list weeks ago. It's insane to think that we have a whole separate list exclusively for her D-related stuff. And because I don't trust the airlines with our D-necessities, all of these supplies will be packed in one of our carry-ons. So far it looks like I'm planning to bring an extra infusion set for each day, 2 extra Dexie sensors, a back-up meter, and double all of our other usual supplies (strips, lancets, alcohols, etc). Also I found out just the other day that, unfortunately, TSA no longer allows liquids (juice boxes, water) through the security check points even if it's due to a medical need, so I've had to rethink our standard low treatment (juice boxes). It looks like we'll be using glucose tabs and fruit roll-ups instead. I'd love to hear some other ideas that would be easy to travel with if anyone has any!

I'm also a little concerned about the actual security check-point experience. I flew last year and was the "lucky" recipient of the "pat down" before my flight home....and I'd love to avoid this for Charlotte if it's at all possible. Fortunately, I thought about this back when Charlotte had her endo appointment a couple months back, so I did get a letter explaining that she has T1 and needs to travel with all of her stuff. Hopefully that will help us avoid too much hassle. I've heard a few different things about how to handle her Dexie and pump (Animas Ping)...some say that leaving them on will create the need for a "pat down" and others say that the x-ray scanner can cause it to malfunction. I'm not sure what the best approach is...I'm thinking we may just leave them on and take our chances??? I've already started preparing Charlotte for what to expect going through security...taking shoes off, putting belongings through the scanner, walking through the metal detector, etc. I'm just really hoping that all this preparation will help keep things low-key.

I'm sure I'm just over-reacting...as I've often been accused of doing. But I just want this trip to be a positive experience from start to finish for Charlotte. So, if anyone has any good airline travel tips I'd LOVE to hear them!

Girls Weekend

Okay, I realize this I should have posted this about a week ago...but better late than never, right???

Memorial Day weekend was a lot of fun for Charlotte. Charlotte's favorite twin cousins came in town to visit for Great Pa's 98th birthday celebration...and that meant a fun-filled girls weekend for the 3 little "besties"! 

After packing up what seemed like an insane amount of stuff for only a 2 day stay by Am-maw and Paw-Paw's house, the girls and I took off across the lake...daddy to follow later in the day! As soon as we got there the squeals of excitement began...we unpacked the care and (of course) they all immediately wanted to change into their bathing suits and hop into the pool! We were on day #6 for Dexie and day 2 of her pump site so I thought all was well....how foolish of me! 

Charlotte lounging pool-side...what a diva!

Within less than 30 minutes from setting foot in the pool I had a gaggle of little girls running to tell me that Charlotte's Dexie sensor had come out. I take a peek, only to see the darned thing halfway hanging out and stuck to her only by the grace of a tiny bit of the adhesive backing. I had questioned myself before letting her in the pool if I should reinforce with a Tegaderm, but she had refused and I thought it would hold at least for the day so we could get the full 7 days worth of use....lesson learned! So I pull the sensor and shut Dexie off and let Charlotte back in the pool. Not much later she comes running again with the gang to show me that her pump site is coming out. Now this makes me cringe, to see that needle pulled out and rubbing/scratching against her skin since the Tegaderm is still trying to do its job to hold everything in place....ouch! So off that goes. Check her sugar...looks good...so I let her back in the pool for a little while longer. Once lunch arrives (courtesy of Am-maw and Paw-Paw) I pop a new site in, bolus her up, and let her eat. Fortunately, that ended our run of D-site fails and complications for the weekend. 

D behaved itself well for the most part and let Charlotte just enjoy the birthday festivities and holiday weekend with her cousins. She even got to indulge in a few very special treats...cake, beignets, and a chocolate snowball! And yes, she can have all of that...we just cover with insulin! This D-momma can SWAG bolus like a pro (most of the time)! 

Red velvet birthday cake for a VERY special Great Pa!

The girls composed and sang an original song for Great Pa

Beignet breakfast with the cousins

Charlotte was SO excited to be able to get a
Chocolate Snowball....takes after her momma!

Dexie and an Unexpected Surprise

Before I get started on this, I just want to say sorry for my disappearance over the past week or so. I've been crazy busy (as I'm sure many of you have been too) with the end of school year, dance recital, and trying to get ready for Children's Congress in just a few more weeks! Hopefully now that the dust seems to have settled from the girls finishing up school last week I'll be more organized and able to post a bit more....goodness knows that with all we've had going on I have plenty to write about!

A few weeks ago we welcomed Dexie (our Dexcom SEVEN PLUS CGM) into our home. She has been well-behaved for the most part...although I will admit she's given us two sensor errors already. The first error was on Day 6 of our first sensor session...it was the morning after we had spent the previous day at the pool. I'm not so sure I troubleshot (is that actually a word?) the error correctly and ended up getting frustrated and pulling the sensor site. With the second error (3rd sensor session, day 2) I did a little more research and was certain there wasn't anything more I could do before I pulled it...it was an "Err 1". I ended up calling Dexcom's Customer Service and they were awesome! After going over what had happened, they agreed to send out a new sensor right away. So...we're currently on our 4th sensor and everything is going along just fine for the moment (hang on a minute while I find some wood to knock on)...hoping I can get a full 7 days at least out of this one!

I will say that I was a little nervous when Dexie first arrived. I had thought that I would have immediately started a sensor on Charlotte. But I actually ended up waiting a an extra two days while I read through the manual and made excuses to hold off...can you say procrastination! Honestly I have no idea why this anxiety had taken over me. I mean really, I'm a nurse for crying out loud...this should be a piece of cake, no different or worse than doing a pump site change or an IV or the like! I guess it was just the idea of me starting the sensor on my sweet little girl for the 1st time! I'm glad I finally did it though...and she said it really wasn't any worse that her pump site changes...whew! I have to say my little girl is amazing! She didn't fight me or act scared or anything....and all this as I am literally reading through the steps in the book as I'm doing it....as a kid I would have thought my mother had lost her mind if she had attempted such a thing with me!!!

Ready for her 1st night with Dexie

So what do I think about Dexie so far??? While I'm not particularly thrilled with some of the glucocoasters I've seen on the screen, I'm glad to be able to see the constant stream of data...these "in-betweens"...so that I'm able to be a better pancreas for Charlotte. I love not only seeing the number on the screen but knowing which direction it's heading and how fast. I haven't made any major adjustments yet...but plan to sit down with the information in the next few days and do some serious tweaking -- hopefully it won't be too overwhelming.

There has been an unexpected benefit that Dexie has provided for me too. On the first night, after starting her sensor, I brought out our old baby monitor and hooked it up in the girls' bedroom so that I would hear if Dexie alarmed overnight. I didn't really think much of this...and neither did the girls. But, this has turned out to be so much more than a safety precaution. You see, each night when I turn on the monitor at my bedside I'm able to listen to my girls' conversations with each other. (yes, I do suppose I'm technically eavesdropping...but they know the monitor is there) They don't really talk about anything in particular, just silly little girl stuff...it's heartwarming to listen to their sweet little voices giggling and talking softly as they drift off to sleep for the night. Funny how if it wasn't for Dexie, I'd be missing out on these special little moments!

What We've Learned....Diabetes Blog Week - Day 7

Today is Day 7, the final day, of the 2nd Annual Diabetes Blog Week! The topic for the day is "What we've learned": What have you learned from other blogs - either this week or since finding the D-OC?  What has your experience of blogging the DBlog Week topics with other participants been like?  What has finding the D-OC done for you?  If you'd like, you can even look ahead and tell us what you think the future holds!

This week has been a lot of fun...and I'm a little sad it's drawing to its close! To be completely honest, being "new" to blogging, when I signed up to participate I wondered if I would really be able to follow through, but I stuck to my committment and did it...and am so glad I did! I've enjoyed writing each of the posts and have learned more about myself and my feelings about dealing with T1....and more importantly, this week provided an opportunity to talk with Charlotte and gain more insight into her thoughts and feelings about living with T1. She really enjoyed having the opportunity to blog along with me...in fact, I think the "10 Things" post was actually therapeutic for her! (It gave her the opportunity to tell me exactly what she thought without feeling bad or guilty about sharing those feelings...and then we talked about it and were able to laugh about some of the things too!)

I also really enjoyed reading through TONS of posts written other D-bloggers! It's been insightful to read through each of them and see how while we're each unique individuals with our own stories, we're all the "same" too. I've enjoyed discovering several "new" (to me) blogs and reading posts from my "oldies, but goodies"! I was amazed each day to read through the posts and see how each blogger took the same topic and approached it from a slightly different perspective from the next.

Participating in Diabetes Blog Week has been awesome! Reading through all the posts and their comments (and receiving such loving and supportive comments on my posts) has helped to reinforce that we're not dealing with this alone. There are so many wonderful, amazing people out there dealing with the "same" on a daily basis! And we're (the DOC) all here to read/listen, support, and help each other through this journey...one blog post at a time :)

Saturday Snaphots - Diabetes Blog Week - Day 6

Today is Day 5 of the 2nd Annual Diabetes Blog Week. Today's topic is "Saturday Snapshots": inspired by the Diabetes 365 project, let's snap a few more d-related pictures and share them again. Post as many or as few as you'd like. Be creative! Feel free to blog your thoughts on or explanations of your pictures. Or leave out the written words and let the pictures speak for themselves.

Diabetes spoils everything...
no "sugary" goodness on her beignets :(

Feeling low

In the hospital just weeks before her 5 year Diaversary

But diabetes isn't all bad....there is some good stuff that comes with it too :)

Camp Victory bonfire - Summer 2010

JDRF Walk to Cure 2010 - We have an AWESOME team! 

Having fun at her Lemonade for a Cure stand
supporting JDRF 

And while diabetes does tag along EVERYWHERE with Charlotte...it certainly doesn't define her!

She's a "typical" 2nd grader

Who loves to swim...

and skate...

and be a Diva!

And just for some added fun...here's a bonus pic for today that my dear hubby texted me this morning:

Not so sure I want Charlie as
JDRF's newest spokesman ;)

Charlotte's Awesome Adventure -- Diabetes Blog Week - Day 5

It's Day 5 of the 2nd Annual Diabetes Blog Week! I realize I'm getting this in right under the wire, but between the Blogger issues yesterday and Charlotte being sick the past few days I'm honestly surprised I'm getting this in at all...whew!

Today's official topic is "Awesome things": What awesome thing have you (or your child) done BECAUSE of diabetes? 

For this topic, I (again) deferred to Charlotte to get her thoughts on this. Her response made me laugh...she initially asked me, "Do I have to come up with 10 things....cause I don't think I can!". She was relieved when I let her know that she only had to think of one...and she told me, "Well, that's easy....it's Children's Congress"!

I guess technically she hasn't done it yet, but...

Charlotte is one of 150 children throughout the U.S. selected to represent her state on Capitol Hill this summer to remind Congress and the Administration of the critical need to find better treatments and a cure for a disease they live with every day -- type 1 diabetes.

These children -- ages 4 to 17, representing all 50 states and the District of Columbia -- will converge on Washington, D.C., to talk about the challenges of living with type 1 diabetes to lawmakers during the Juvenile Diabetes Research Foundation (JDRF) Children's Congress 2011, from June 20 to 22.

Check out what Charlotte has to say about Children's Congress and click over to learn more about Charlotte and the other 2011 delegates.

Charlotte is really excited about this opportunity to meet travel to Washington to advocate for herself and all the other people (children and adults) living with type 1 diabetes. We're hopeful that our visit will make an impact and help to bring us another step closer to the cure. She's also excited to meet and make friends with other children who are the "same" as her...and I have to say that I'm especially excited that opportunity for her too!

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!