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!