Growing Up...

Over the past few weeks, I noticed that Charlotte had been "extra good" about picking up behind herself and her little sister and keeping her room nice and tidy. So as a reward I decided I would take her to Hobby Lobby to get the "Eiffel Tower" for her bedroom wall that she's been admiring over the past few months...Charlotte is currently obsessed with all things "Paris".

So last Saturday afternoon Charlotte, Amelia and I loaded up in the car and headed out to the store. We walked up and down the aisles and Charlotte picked out her Eiffel Tower and a hot pink, old-fashioned alarm clock (the kind with the 2 bells on top). She was so proud of her "big girl" purchases and couldn't wait to show them off to her daddy and Nonna!

On Sunday night as I tucked the girls into bed, Charlotte asked if I could set her alarm...so I twisted the dial to 7 o'clock and flipped the switch to "on". To be honest, I didn't think the alarm would make any difference and figured we'd still have to go turn the alarm off and get the girls up.

I was pleasantly surprised as I laid in bed half asleep on Monday morning and heard the alarm clock ringing and then quickly shut off. I was exhausted and didn't feel like dragging myself out of bed quite yet so thought I'd give myself and the girls a few more minutes before going to get them ready for school. Only before I knew it Charlotte was standing at my bed quietly letting me know she was ready for her breakfast. I looked up and had to do a double take...she was already dressed and ready for school! Not that there was ever any doubt, but I'm certain now that she must be her daddy's girl!

With such a wonderfully sweet wake up call, I managed to peel myself away from the mattress and make my way to the kitchen to start the day. Charlotte continued with her "big girl" attitude and helpfulness. Without me even mentioning it, she sat at the table and checked her sugar and even helped enter her carbs and sugar in her meter remote for her breakfast bolus. Then after breakfast she helped gather all her snacks and food for her lunch box, wrote the carb count on the bags, and even helped prepare her sandwich!

I enjoyed each and every moment of the morning while thinking in the back of my mind that certainly this wouldn't last. But my suspicions have been proven wrong...this lovely new trend continued all week...and Charlotte told me tonite that she wanted to set her alarm for 1am (aack!) so that she'd have some extra playtime this weekend...of course that isn't happening and served as a reminder to me to switch her alarm to 8am for the weekend instead of 7!

I'm not sure what prompted this new trend for my "big girl". Perhaps she's been sprinkled with some sort of magical pixie dust or maybe our family has been transported to another dimension...or maybe, just maybe, this is all part of my little girl growing up. While I'd love for Charlotte to stay my "little girl" forever...I do have to admit that I am really enjoying these little changes as she's slowly (oh, please let this be a slow process) growing up and blossoming into a responsible, self-confident and independent young lady.

Disappointment and Determination

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

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

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


(This is what my reaction probably looked like)



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

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

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

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

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

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

Report Card time...and thoughts on Dex

Not sure where the last few months have gone, but I looked at my calendar last week and realized it was time again for Charlotte's endocrine follow-up...how in the world did it manage to sneak up on me like this???

For those of you that aren't familiar with this, Charlotte goes to her pediatric endocrinologist every 3-4 months for a "check-up" of sorts for her Type 1 diabetes. And at each of these check-ups they run a blood test called a hemoglobin A1c...basically, this test lets us know how her blood sugar has been on average over the past 3 months; the higher the number, the greater the risk of developing complications related to diabetes.

Now being the "perfect pancreas wanna-be" that I am, I immediately start pulling her downloaded pump/meter info and start analyzing (and over-analyzing) everything and trying to make a best guess at what her A1c will be at the visit. Looking at her average blood glucose over the past 90 days was not making me thrilled...especially since we had some lovely highs from the holidays and a run-in with the flu thrown into the mix, UGH!!! (fortunately the numbers over the past 30 days are more where I like them to be) But, naturally all of this got me riled up about how I hate that even with all the data we do have, we're still just looking at mere snapshots in time and not the whole picture. So of course, my not-so-secret desires for a Dexcom have resurfaced!

For non-D folks: Dexcom is a handy-dandy little tool (a continuous glucose monitor or CGM) that Charlotte would have attached to her and wear (much like her insulin pump) so that we could continuously monitor her blood glucose level. It would provide us with blood glucose data equivalent to 288 fingersticks/day and allow us to see if she's trending up or down and how quickly she's rising or falling. 

So all the thinking about things prompted me to make a phone call to our awesome endo today to see about setting up a Dexcom trial for Charlotte. When he called back we chatted a bit about the pros and cons of CGMs and he gave me the name and phone number of our local Dexcom rep for me to call and get the ball rolling for the trial....woohoo!

I'm hoping that we can start the trial soon and that I love the Dexcom as much as I imagine...and that Charlotte decides to love it too! In the meantime, I'll be agonizing over the "snapshot" numbers and hoping for good news our appointment on Thursday morning.

My Valentine...

At the risk of seeming sappy, I decided that I would write today's post as a tribute to "My Valentine". His strength, support, and love help to make each of my days better and brighter.

Sixteen years ago, just a few hours after being introduced to an incredibly attractive, funny, and friendly guy, I told my best friend at the time (who had introduced us) "that's the man I'm going to marry". Cliche I know, but there was just something about him. Sure I hardly knew him, but I knew that I wanted to know more. Over the next several weeks, I made excuses to spend time with him...needing class notes, studying together, etc. We got to be good friends and the time we spent together reinforced to me he was someone very special. A few months later we started dating...we spent our first 2 years of college together. And then over the next three years, we managed through a semi-long distance romance spending our weekends together while I was a just over an hour drive away finishing nursing school in another town.

In the summer of 1999 he proposed and, of course, I said yes..and in June 2000 we got married! I couldn't have imagined then what our life together would bring! We've been through a lot of ups and downs over the past 10 years. We've created two beautiful little girls, bought our first home, and made tons of wonderful memories together as a couple and a family! We've also, unfortunately, experienced Charlotte's diagnosis with D (and the challenges that came with it) and my diagnosis and treatment for thyroid cancer.

His love and commitment to me is evident. And while I'm certain he feels the same...I also want him to know how much he is appreciated! He's a wonderful husband and a devoted father... he's been there for everything. Through all the good and the bad, he's never missed a beat. And no matter what, he always knows exactly what to say to make me smile, laugh and feel loved! I couldn't ask for a better partner to share in this journey with me!

It's not always been easy for us, but his love and support for me (and our girls) has never waivered. Our challenges have brought us closer together and made us stronger. I am truly blessed to have such a wonderful husband.

We never know what tomorrow might bring, but I do know "it's always better when we're together"!

Happy Valentine's Day!

Sleepover

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

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

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

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

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

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

Dreaming...

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

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

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

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