Sunday, February 20, 2011

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 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 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!


  1. Love the song! That's the perfect attitude - just get back up and keeping going! I am sure you are doing a wonderful job - regardless of what the number said. But I know it stings when it's not what you had hoped for! Here's to better numbers and a Dex trial!

  2. Hoping that the phone call that interrupted our morning chat means a Dexcom is in Charlotte's immediate future :-)

    And hoping this comment actually posts ;-)

  3. That picture cracks me up! Sorry the # wasn't the one you wanted, but I'm sure you're doing a wonderful job, and if the endo isn't too worried, then I would guess you're doing a much better job than you're giving yourself credit for! That said, I totally understand. My a1c has been creeping up over the last year and I have been really disappointed in myself with the last 2 #s I've gotten. I guess it's all about how you react to it though, and it sounds like you're reacting in the right way--ready to take charge and kick butt. :) Hopefully you'll get your Dex asap!!

  4. I do love that pic Valerie!

    It is such a let down when the number isn't quite what you are hoping for...even a tenth off and I admit that I feel a bit deflated and frustrated with "D".

    Chin up! You guys can do this. (((HUGS)))

  5. I understand the disappointment in not getting the number that you wanted...but I respect your "moving forward" attitude!

  6. I hate to share this for maybe a tidbit of fear of judgement for my husband or his mom...but when he was in his teens they had trouble keeping his A1C under 10, yeah that's right under with the growth hormones and other fluctuations not occurring regularly he has no trouble maintaining a much lower a1C, but back then that was it. And he still has all his fingers, toes, kidney function, eyesight...he has it all...I am not in any way trying to make light of your frustration, but thought just maybe knowing that an adult made it through all those crazy hormonal high A1C years without causing damage than you just might see a light gleaming at the end of the tunnel. And bravo to you for talking to positively to your daughter about it and to her endo for being positive, too. I think you've got a great team :)

  7. No judgement here Sarah :)
    Our endo pointed out exactly what you just mentioned. Still the disappointment was there for me initially...and maybe not totally because of the #, but more that is was an increase from her previous #.
    It is comforting to hear about adults that were diagnosed as young kids and cared for without the technology we have now and are living healthy lives despite it all! I truly do appreciate the comment! It does help put things into perspective and keep me positive...and gives me examples to share with my sweetie too!