Friday, May 27, 2011

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 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 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 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" 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'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!

Sunday, May 15, 2011

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 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 blog post at a time :)

Saturday, May 14, 2011

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 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'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 ;)

Friday, May 13, 2011

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'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'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 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" 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???

Wednesday, May 11, 2011

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!

Tuesday, May 10, 2011

Diabetes Blog Week - Day 2; A letter to Charlotte

It's Day 2 of the 2nd Annual Diabetes Blog Week! And today is letter writing I've chosen to write a letter to my daughter, Charlotte, who was diagnosed with Type 1 diabetes 5-1/2 years ago at the age of 2.
(Warning: reading the contents of this letter may cause fluid leakage from the eyes)

My little ladybug - Charlotte
dx'd with Type 1 on 10/31/2005

Dear Charlotte,

There is just so much to say...yet I'm not really sure where to begin. We've been at this "D-thing" together now for just over 5-1/2 years. I'll never forget the day you were diagnosed...picking you up early from daycare and taking you to the pediatrician. "The thought" had crossed my mind, but I didn't think it could be true! You were so young and innocent...and I didn't want that to change. I didn't want D to force it's way into our home and take away your carefree childhood...but, as you know, D doesn't listen and entered our lives anyway.

You've been amazing about all of this from the very beginning....even though I know you would wish it all away in a second if you could! I know there were times when you fought and cried when it was time for your shots or site change....but I can't say I blame you, I'm sure, in your shoes, I would have done the same thing (or even worse...just ask Am-Maw)! I know that you've gotten braver over the years and you don't cry anymore...but I know it still hurts; I want you to know it's okay to say that...and even to cry sometimes if you want or need to!

You're dealing with some hard stuff, sweetie...much more than I ever had to at your age....and you're doing an incredible job!!! You've learned so much more than I could have imagined you would over these past few years. And you've grown and matured beyond your's bittersweet to me. You've learned how to make healthy food choices, count carbs, check your sugar, work your insulin pump, recognize when you feel low...the list goes on and on. Most kids your age don't even know what carbs are, let alone how to figure out how many they are eating or drinking! You've made me proud by learning to become (mostly) independent with your D-tasks...but at the same time it makes me sad that these are things that you've had to learn.

Although you haven't come right out and said it, I know you've been a bit burned-out lately dealing with D...I see that look in your eyes when you're interrupted from your fun to deal with D. I wish with every ounce of my being that I could just take it all on myself for you...even those nasty glucocoasters. But since I can't really do that, I'll do the next best thing. I promise to be the best mama pancreas I can be and to relieve you from your sugar checks, insulin bolusing, and "low" snack grabbing duties whenever you need a break from it all! I know it's not as good as a cure, but it's the best I can do for now....and we'll work together toward finding that elusive cure!

And speaking of the cure....I want you to know how incredibly proud I am that, even at 7 years old, you are learning to be proactive -- fundraising and advocating for better care and eventually a cure! You aren't just sitting around waiting for the cure to happen. You're doing great things and making a difference, not just for you but for everyone out there living with Type 1 diabetes...and those who haven't yet been diagnosed.

I'm not sure if I ever told you this before, but...ladybug, you are my hero! You've been faced with more in your 7-1/2 years of life than many people are faced with in a lifetime...yet you don't let it get the best of you or drag you down, instead you are taking the lemons you've been handed and making lemonade!

I love you my ladybug!


Monday, May 9, 2011

Admiring our Differences....Diabetes Blog Week 2011 - Day 1

Today kicks off the start of the 2nd Annual Diabetes Blog Week!

The topic for the day is: Admiring Our Differences; pick a type of blogger who is different from you and share how they inspire you and why you admire them!

I first found the DOC in 2006, about a year after Charlotte was diagnosed with T1. Not sure what I was trying to search for, but I somehow stumbled upon six until me ...and I was hooked. Until that time I didn't really know any adults living with Type 1...and I had no idea what sort of impact T1 might actually have Charlotte's future. Although, there were many people who were "happy" to tell me all about the grim future that was in store for her...there were several people who were happy to discuss with me how sad it was that my little girl (yes, she was only 2 at the time) would never be able to grow up and have her own, thanks! And I even had a "lovely" (eyes rolling to the back of my head) Case Manager from our insurance company tell me how Charlotte would ultimately end up losing her kidneys or legs before adulthood if I didn't get her blood sugar under control quickly (this was told to me within 2 months after her diagnosis during her "honeymoon" phase...I can only imagine what she'd have to say to me now with some of our glucocoastering we've been dealing with recently). So, clearly, finding Kerri's blog and reading through her posts was a welcome change from the doom and gloom that was being spouted off to me on a pretty routine basis.

More recently, I've also found a few other adult bloggers with T1... K2 at Diabetesaliciousness, Valerie at the dLife, and Kim at Texting My Pancreas. Each of these awesome ladies has something a little bit different to offer...yet each gives me hope that, despite the many challenges D will throw her way, my little girl will grow into a confident, healthy adult able to do whatever it is she so chooses.

As a D-mama, being able to read through the blogs of adults with T1 is invaluable. Charlotte is still young and might not be able (or willing) to express to me how D makes her feel, physically and emotionally. So being able to get even a glimpse into T1 from the person's (rather than parent) perspective has helped open my eyes to things that I may not have realized could be (or is) a concern of hers...and I imagine that this will be even more true as she gets older! These folks know D inside and out and to hear what they are thinking and feeling lets me know what my little girl might likely be thinking and feeling...and what might be in store for her down this long road ahead!

Sunday, May 8, 2011

Happy Mother's Day

Sending my love to all the Mommas out there this Mother's Day!

Being a mom is something I always knew I wanted to be. As a little girl, I dreamed of having a baby of my own to hold and love. Nearly eight years ago, I started my journey into motherhood. I knew it wouldn't be all sweet-smelling baby heads and chubby little baby feet. But what I didn't know then was that I would be chosen as a D-mama (and become part of this very special group of ladies)...which comes with some seemingly-impossible challenges, but also with the most amazing rewards!

Charlotte and Mommy - 2004
Tonite, while reading Hallie's blog post on The Princess and the Pump, I came across a link to her Mother's Day post from last year. It includes one of my favorites, Erma Bombeck's story "How God Selects the Mother of a Diabetic Child"....definitely worth a click over to read it if you haven't come across this before. Each time I read it, it makes me stop and realize that we were indeed chosen for this position as "D-mama" because we possess a special set of qualities that help make this life work us (although somedays it may not feel that way).

Happy Mother's Day to each and every one of you!

And a special guest post by Charlotte:

To all the mommys with kids like me!

Roses are red, violets are blue
Candy is sweet and so are you!

Thanks for taking such great care of me (and all the other kids with D).
We all appreciate you dudettes (hehehe)

You are the sun and you are fun!

Have a great Mother's Day!!!!!!!!!!!!!!!