Monday, July 25, 2011

"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) 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. 
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.

Wednesday, July 20, 2011

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" 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 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!