Twins Always Take Care of Each Other!

Wednesday, July 31, 2013

A New Chapter - Omnipod!

We have been using an insulin pump for our daughter for almost 4 years now and have loved every minute of it. The lifestyle the pump affords, in our opinion, (coupled with our Dexcom continuous blood glucose monitoring system) has afforded us the closest to "normal" possible since diagnosis.

That being said, we chose for our first pump the Animas Ping. This was a WONDERFUL first pump and she LOVED it. In fact, now that she is now longer using it, we have to get a display case for it to put in her room! LOL! The ping is small (I have always compared it to carrying a pager) and it comes in different colors so convincing her initially to how cool it was really wasn't too hard because it was PINK! The customer service at Animas was also fantastic! 

But as we were nearing the end of our 4-year-warranty on that pump we began to dream about the other pump options out there. We recently attended the Children With Diabetes Friends For Life Conference where they had an Exhibit Hall and all of the medical device companies were in attendance showing off their stuff! It was awesome. We got to hold and play with the stuff and ask questions of the reps all in one place!

And I kept finding my way back to the Omnipod stand. See, when we were initially going on the pump years ago, this was my first choice. But it was a bigger pod back then - seemed pretty big for her little body - and the doctor's office that we currently went to (Read "Finding the Right Doctor") really discouraged that particular pump for several reasons citing the primary reason is that the basal doses did not come small enough. In any event, they convinced me to look elsewhere. After talking with some friends and doing some research, I settled on the Ping (and changed endo offices!) and we were off to the races!

But here we are faced with this new decision. We have seen one pump but time to stick with it and move on. We really loved the Ping and it is a GREAT pump. No problems with it but WOW, the thought of my little girl not being tethered to a pager-sized device 24-7 was really appealing. Now especially since Omnipod finally came out with their new pods and they are, in fact, smaller and lighter! In the face of all of the other great technology out there, going tubeless really had an alluring draw!

My daughter was TOTALLY in love with the idea. The reps at the conference gave us a test pod to try and she wanted to put it on that day and she wore it for a full 3 days and was upset when it fell off. She loved it! I loved it! It was time to make a change! 

And Omnipod's company (Insulet) makes it tremendously easy to switch. So, WE SWITCHED! It took a couple of weeks to get the insurance information worked out and everything lined up but...
Check it out! It is like Christmas in July! I don't think we have ever been so excited for a package to arrive! We watched that tracking number for 2 days straight!

There are a lot of things that we love about the Omnipod and I will blog about those another day, in the interest of not making this the longest blog ever written. But just know that we are STILL loving the Omnipod - LOVE, LOVE, LOVE! My D-girl is no longer wearing special clothing to hold her pump around her waist. She looks and feels COMFORTABLE! She is HAPPY! And as a mom, that makes me happy :-)

Thanks for reading!

Sunday, July 21, 2013

The Soda That Should Have Been

So, a few weeks ago we are out to dinner with family at a local chain restaurant. Good food but notorious for the sloooow service. Slow... but usually not "bad." But that night was the exception.

When living with type 1 diabetes (or having a T1D child) you quickly become acclimated with the pitfalls of dining out. First of all, most restaurants can't tell you the nutritional value of the food you are consuming (yikes, I know, right?!) requiring type 1 diabetes to GUESS the carbs in their food (easy? you think? not so much!) But you would think that a simple request could be followed. Now, I realize that the waitress could have been having a bad day and I fully recognize that people make mistakes. But when in the food service industry, mistakes can cause very severe health repercussions so mistakes are no so simple.

So, when I order a diet soda for my diabetic daughter and have found that I have to make it my regular routine to double check to make sure the person serving the food 1. remembered or 2. simply didn't screw up. I was most disappointed to find that this time.... (insert drum roll)
Yep, you guessed it! 

A REGULAR cola (GASP!!!), when we ordered a DIET!
UGH. So, if I had been too busy to taste test this soda (which would have been easy considering we had a grand total of 5 kids at our table all talking at the same time!) We would have been fighting highs blood sugar levels that would make me want to fall off of my chair! AND, the best part was when we told the waitress about the mistake, we didn't even get an apology (clearly she didn't realize the magnitude of her mistake!)

I was busy patting myself of the back and giving myself the "mommy of the year" award for deftly catching the rogue soda before it hit my D-girl's lips. But I celebrate my own victory because sometimes it is hard to be the mom of a T1D because THOSE victories are AWESOME victories but no one but other T1Ds or T1D parents seem to understand or fully appreciate the real victory in these situations. As a T1D parent, we have victories and days that, well, aren't the greatest, but at the end of the day we know we have accomplished amazing things for our kids. 

Thanks for reading! 

Tuesday, July 16, 2013

First Time at CWD FFL

Our experience at the Children With Diabetes Friends For Life Conference leaves me short on words. I have friends that attended the conference in the past and suggested we give the conference a try and first let me say, you can't go wrong with any conference held at Walt Disney World in Florida! But add in over 3000 people that live and understand the type 1 diabetes lifestyle, you can't go wrong with the description I heard flying around down there - it was like "coming home."

We were immediately greeted with Disney hospitality which is always something our family can get used to in a hurry! We walk into the registration area and found poster board after poster board of this huge, awesome collage that a volunteer had put together of the type 1s that attend. We had no trouble at all finding the picture we had submitted of the twins (although only one of the girls is type 1, we didn't want our "type awesome" to feel left out).

Upon registering, everyone receives conference bracelets. Green for the type 1s and orange for the type awesomes. This is a way for the conference staff to identify the diabetics on-site if there were an urgent medical emergency, but talk about the sense of belonging it creates for those diabetics to come to a conference to see all of those green bracelets. When they attend school, they may be the only type 1 diabetic. Or perhaps there are one or two more in their school. But at CWD FFL, they are surrounded by type 1s and there is an instant friendship. They can see and feel that they are not alone. And the T1D siblings also received some "sibling" time and our type awesome enjoyed that time the most!




We were able to meet up with some friends we have talked with online but had never met and also those that we had met maybe only once or twice before. We also spent time with friends from home that were also in attendance. 


We also had the opportunity to meet some 
exciting new friends
And, of course, there was Coco the monkey! 
Disney's new character with type 1 diabetes!

There was an amazing exhibit hall on-site where vendors set up and made themselves available to discuss their products. Many non-profits and medical organizations were also present and made for a very exciting blend of vendors to visit. They all had exciting stuff to entertain the kids which was fantastic because it allowed us parents the chance to speak with the vendors!

The most exciting part for us would be that we were due for choosing a new pump come next March. So, this was the perfect time for us to be scoping out all of the latest and greatest technology. We visited each of the companies and fell head over heels in love with going tubeless on the Omnipod. We are jumping the gun on our new pump purchase and going ahead with the Omnipod now. We are waiting for insurance company approval now! So, keep your fingers crossed for us!



Our D-girl is most excited at the thought of "decorating" her pods. She is rather artistic after all. Here is a picture of her "demo pod." They gave us one to try out while we were there. It was not filled with insulin. We just slapped it on and she wore it around and tried out the feel of it. She really enjoyed not being tethered to a pump device by a tube. Not carrying something around all of the time. This we would just attach and forget about it. NICE! We talked to several parents at the conference who made the switch and loved it.

You can see how the pod lends itself for decorating. She is already making plans for how she will decorate each pod with colorful colors and jewels!

I know, I know... the stuff we get excited about, right?! Well, it is quite exciting for us J
Thanks for listening!

And here is a little picture to let you know what we did with our spare time in Disney! Having fun, of course!



Friday, July 5, 2013

POOL VICTORY!

WE DID IT! WE DID IT!

Last year we declared defeat and we actually took off the CGM (continuous blood glucose monitor for the summer) as we were having such a difficult time keeping the sensor in place on the skin and it was not worth stressing over losing the transmitter and the constant battle of trying to keep the tape on our D-girl's skin. 

This year we faced the CGM sensor with renewed determination. If you are a loyal reader of my blog, you know that we 100% believe in the effectiveness of this technology to help better manage type 1 diabetes. I should say that it has helped us a great deal anyway. And with the new Dexcom G4 Platinum  release this year and the fantastic new features (like increased accuracy and range on the receiver so that I can actually sleep with the receive on MY nightstand) I simply was unwilling to give up the CGM for the summer. 

A few days ago I wrote about our first experience with the pool. FAILURE. Take a read if you haven't already. Water is our Friend? But anyone that knows me know I am a pretty determined person. There HAS to be a way to keep this sensor on in the water (for extended periods of time). Note: we do not have issues keeping it on for daily showering, etc. But summer fun has always proven to be a problem. The POOL is a must for any kid in the summer and how on EARTH could we keep this thing on?? Everything we have tried resulted in failure - or at least not the greatest results. 

BUT - we have found the answer!!! And I will let the pictures tell our story!
First let me say that after my last blog about our pool failure, we had a lot of great suggestions about tapes and adhesives. And we first started out with a combination of these under what I am about to show you. 

Here is my disclaimer: I am not a doctor and I am not a rep for Dexcom. This is simply what we found to work and for the FIRST TIME EVER - not only did we have a marginal victory - we scored a HOME RUN!!!

Step 1. When applying the CGM sensor to the skin for the first time. Peel back the manufacturer's tape and apply some Mastisol with a Q-Tip (be sure to avoid the spot where the actual probe goes under the skin). Then apply sensor as you regularly would any other time. 

Step 2. We then took another Q-Tip and applied Mastisol directly to the skin around the sensor. Meaning over top of the sensor sticker we just applied. Then we applied a layer of Opsite Flexifix. NOW, that Opsite Flexifix should not be going anywhere (hopefully, right?!)

Then we got to thinking after seeing something in a junk-store on the boardwalk that jogged a memory about when you go to give blood or get blood taken and the nurses place that stuff around your arm. You know, that stretchy stuff that sticks to itself. Hmmmm - now THERE'S and idea! So, my parents were like, you know you can buy that stuff at the local drug stores, right? And so that was our next stop and indeed we found what we were looking for! See below! They sell all different sizes but we opted for the larger roll so that we could cover the entire CGM site without having to wrap it several times around the arm. 

THEN, just to be on the safe side! We applied this pump band that we had purchased from pumpwear.com. We had to special order the size because her arm is so small but they were fantastic about getting the right measurements and making it happen for us!

And with ALL OF THIS, we were ready to hit the pool! CRAZY I know but if you knew 1. how much she gets upset when we have to replace the sensor, 2. how much these things cost (thank heavens for insurance!) and 3. how valuable the information is so we just are unwilling to go without anymore - you would understand the extraordinary measures. It is worth it. 

And did it pay off?



WOULD YOU LOOK AT THAT! For the first time ever, we were able to swim for HOURS and not worry about the sensor tape falling off. It didn't even BUDGE! You gotta know I was doing a happy dance when we pulled all of the stuff away and this is what I found! 

SO, please take from this what you will and I hope it helps someone else! Because of all of the money I have spent trying to find the perfect solution to the sensor dilemma in the summer months, I believe we have found OUR answer! 

GOOD LUCK AND HAPPY SWIMMING!