Changing Pumps

T1D parents know heartbreak, it's practically a certificate that is handed to you the day your child is diagnosed. There are additional little heartaches throughout the years....those times that your child is too high and can't have a particular treat, the times that a pump site fails early and you unexpectedly have to change a site on a crying child, the nights you have to wake your sleeping child to ingest sugars so that they can survive the night.

But we recently encountered one that made my heart shear a bit more. Our first case of bullying.

In this case, it was due to her pump. My daughter is 5 and is currently in Kindergarten. Although her class is very supportive (the teacher's own kid has T1D), unfortunately she is exposed to other, older children who have not been taught about T1D. So at P.E., she told us that she was being called names by 2nd graders. The standout of those names was "octo-tube". (I can't go harass all the kids at the school for hurting my daughter's feelings y'all. Well, I could, but I choose not to because I want to be able to step foot on the school campus.) She was on the Animas Ping, which to that point 3+ years in, had been a great pump to us. We had originally looked at the tubeless Omnipod, but at 24 months old, her basal rates were not high enough for their minimum basal rates. The Ping was fantastic with its' remote so we didn't have to hold down a child to give insulin doses. It was waterproof, it was able to give those microdoses, it was pink. But what it wasn't was as invisible as my daughter wished it to be. Her little fanny pack holding the pump was ever present, and her tube was often found circling her waist. I wouldn't change our decision to go with it because it was what we needed at the time. But M is now old enough to understand more about the disease, more about social interactions, more about shame and humiliation. She expressed that she liked the Omnipod that she was seeing other girls in a local diabetes group have. She liked that there was no tube and that she could hide it under clothes if she wanted to.

I can't change diabetes, but this was something I COULD change.

So I did. I "cut the cord". I cancelled the pending order for Animas supplies. I called her insurance company to check for any limitations in coverage for Omnipod. I called Omnipod and filled out the benefits check. Within a week, I had the Omnipod sitting in my hands, and a week after that, we had pump class with the endo's office and were active on it. The cost? $199.99 with Omnipod's special program for people like us wanting to switch to tubeless while they have an active warranty for a tubed pump. We have 8 months left on our warranty with Animas (and had just recently been issued a replacement due to some screen issues), so now we have a warrantied pump through Omnipod for 2 years, which will bring us into the end of 2018. I am hoping that (real) Artificial Pancreas's will be FDA approved for her age by then and we can use our insurance to purchase one. (No Medtronic, your 670g is NOT a "real" AP).

 Of course I had to immediately paint the pods. Because I have a nail polish addiction (thanks Julep!), I had a ton of colors. Add in some stickers, and I had a somewhat cute collection to get her started. I was able to surprise her after school, and she got in on helping to paint a few as well. I also discovered I am not as good of an artist as I thought :/

No Vacation from Diabetes

A year and a half ago, we booked a bucket-list trip to Alaska. Being from Florida, we hadn't traveled so far for a vacation or been somewhere quite as cold. We got lucky and were able to travel with my mother, as well as my best friend and her family. In fact, we were able to get aft balcony cabins side by side right on the back of the boat. A charmed life it seems, until you factor in the unwanted tag-along guest, diabetes. Airport security is a nightmare as I receive pat down after pat down and scolds for bringing liquids. I am within our rights to bring shelf-stable milk to get my daughter through a 6 hour flight, but apparently this is inconvenient for TSA to check and I should have brought open containers instead. (Yes, let me then have to bring ice packs, a cooler, additional bottles, etc just so you can save yourself the hassle of processing a swab sample). Thankfully the flight is fairly uneventful and we land on time. (A whole other story about the trip home with lightning delays).

Once in Seattle, we hop on the Link, go check into our hotel, and head out to explore. We end up in the Pike Place market, and sit down to eat. I see M acting tired and decide to refrain from pre-bolusing her meal. Score 1 for mom intuition! She crashes while we are waiting for our food. As in, could pick her head up off the table and it would fall down kind-of crash. She ends up having to be carried throughout the marketplace and sleeps for over an hour. All I could think about was thank goodness we didn't bolus her for all those carbs, because she was out-out.

Our first port stop is in Juneau, AK, where I've booked a canoe trip on Lake Medenhall, where we will paddle up to Medenhall Glacier and get an up-close view, as well as Nugget Falls. Of course being a 5 year old diabetic, M ends up having to go to the bathroom at our Nugget Falls pit stop, so we teach her the intricacies of pottying over the side of a rock.

Nugget Falls

During our paddling session, my husband realizes that her Contigo water bottle has worked its way out of his pocket and dropped off the side of the canoe....somewhere.in.the.lake. M starts to freak out about how she won't have her water bottle to lower her blood sugars. I mean, why is this fair in life that those are the worries for my 5 year old? Even after assuring her that we will get a new one ASAP, she continues to scold her father about losing it. I let the guide know to keep an eye out for it on the off-chance we come across it somehow on our way back, but considering the size of the lake, know it's a lost cause. Close to shore, we see an otter, which is extremely rare because the silt from the glacier makes this an inhospitable environment for life, so nothing grows. If nothing grows, there is no food, and no food chain. But once in awhile a salmon makes it from an adjoining river, and the otter follows, and we get a sighting like we did. We land on shore, take off our gear, and start to walk back to the bus when the guide runs up to us to let us know that our water bottle has magically appeared on the shoreline. My 5 year old is now convinced that the otter brought it back to her. (More likely a kayaker, but whatever).

Lake Medenhall

While on the cruise, we decide to take M to the kid's club. They give phones to parents of D kids, so that they can tell us to come back if needed. So of course, this happens nearly every time we drop her off. We have to pull her out, give her a snack, let her go back in.

Staving off a possible low

On our trip into Ketchikan to ship home some fish, we have a low.

On our car trip into the Yukon, we have a million potty breaks, some of which are without real bathrooms again. My mom gets to introduce her to camping mode.

British Columbia/Yukon Territory

This was our first real vacation with M since her diagnosis almost 4 years ago. I felt so intimidated by traveling with D on board, and couldn't justify the cost of a trip when I wasn't sure if we would be able to enjoy ourselves. But this trip changed our minds. Although we didn't get a vacation from diabetes, we got away from the day to day stressors of every other part of life, to make this the trip of a lifetime. It was cold, but we didn't have any insulin issues. TSA stinks, but we made our flights. We needed lots of insulin, but my daughter ate everything she wanted on the ship, and ran those servers with her demands of yogurt and ice cream. She loved the kids club, and I was even able to sneak away for a few hours to go read in the library. Sure, we had an entire bag just dedicated to our D supplies, but what's an extra bag when you can have a view like this?

Johns Hopkins Glacier, Glacier Bay

Appeals Help is Gaining Steam

Things are rapidly picking up on the diabetes insurance denial advocacy front. I've recently had a few opportunities to contribute my knowledge about insurance denials and appeals. 

The first thing is to thank d-mom Faye Kolly for bringing awareness to the plight of denied T1D medical equipment and how this is an outrage to our T1D kids. While I was packing for L.A. to go to the Dexcom commercial shoot, I was alerted by my "network" that Faye's 2 year old daughter Esme had been denied a CGM AND a pump. I was able to complete an appeal letter while Faye simultaneously rallied the diabetes community into action. She was helped along in part by Beyondtype1.org's co-founder Sarah Lucas, who helped spread the word to Beyond's followers that they should contact Humana to report this injustice. Read more about Esme's fight HERE.  Long story short, Esme was approved for both items upon external appeal. Soon after, Beyond Type 1 contacted me regarding gaining info on fighting denials, and now has their first insurance help guide: Navigating Denials. 

Being a part of their story led me to Scott Benner over at Arden's Day. Scott's podcast, the Juicebox, tackles the pertinent issues surrounding T1 diabetes and has thousands of listeners per month. He was generous enough to invite me on as his guest for episode #61 and write a guest blog post: 10 Steps to Take After Your Insurance Company Denies an Insulin Pump or CGM, which spins off of the podcast info. 




There may or may not be commentary on the United Healthcare (UHC) and Medtronic insulin pump deal within the podcast episode. Oops. Did I mention earlier that the diabetes community tends to band together to fight injustices??

Hollywood Starlets!

I have repeatedly said it, but guess what?! I LOVE Dexcom! Recently we (my daughter M and I) were given the opportunity to apply to be on their new commercial, to air in June 2016. Phase after phase we passed, until we got the final notification that we were selected to appear in the commercial! 

Within a week, we flew from our home in Florida to Los Angeles, a tidy little 5 hour non-stop flight with a 4 year old. Yippee!! We were shuttled to our hotel, the W in Hollywood, which was so.very.nice, so it was a treat to stay there. 

The W in Hollywood

That night, I met the rest of the patients who would be appearing in the commercial, other testimonials, some of the production team, and a few Dexcom employees. One of these employees was Mike Bloom, VP of Global Marketing. It was meeting him that truly helped my love for Dexcom grow. He spoke of patients being on a CGM system, regardless of whether it is Dexcom or not. I questioned him, thinking it seemed counter-intuitive for someone in charge of marketing a specific CGM to be advocating for the use of ANY CGM. But that is the kind of people at Dexcom, ones who care more about what is best for the patient than the bottom line. Sure, it's great if the patient chooses Dexcom, but he emphasized that any CGM is better than none. And that right there folks is a class-act. 

Then he said music to my ears - "I'd love to put you in touch with the Dexcom insurance team to talk about how to improve appeals." This would be a collaboration where we might learn from each other in order to help a larger amount of people gain approval for this life-changing device, so of course I jumped all over the opportunity. From my earlier posts, you know that I am a heavy advocate for insurance appeal help. In the week surrounding the trip I completed 8 insurance appeals for others, in addition to several more guidance sessions where I was able to point the patient towards getting coverage without needing an appeal. In just one week, with just one single volunteer. Imagine all the others who don't go online, who don't ask for help, who don't happen to get referred to me, who don't know that appealing can work! This is literally the tip of the iceberg for those needing help, so the opportunity to talk to Dexcom on a peer-to-peer basis about improving coverage for others is something I desperately wished for but didn't think would/could happen. 

The following day was the commercial shoot, whereas M was attacked by a horde of ants in her pants. This girl was so amped up that she literally would not stay still! So if you see a little girl in the Dexcom commercial that won't stop wiggling, just know that she was only 4 and was more interested in the ball off-camera than standing next to her boring mother! She was also enamored of fellow Dexcom Warrior Katelyn Prominski, who is a professional dancer with T1D.....and who was dancing in the shoot... and therefore M decided she'd also like to dance around during the shoot - haha!

While in studio, Kris Freeman, Olympic cross-country skier arrived to film, so of course I had to get a photo op with this T1D star! M was over it by that point, so grabbed her for a quick photo before running to catch our ride back to the hotel.

Kris Freeman, Olympian

After we were done with the shoot, we were able to spend the rest of the time in L.A. having fun. For a parent alone with a 4 year old over 2,500 miles away from home, this was basically spent riding the Metro, walking the Hollywood Walk of Fame, going to Trader Joe's & Starbucks way too many times, and being pulled into any store that happened to have a Disney character in the window. Of course there was a Dexcom and a pump site change while there, so I had to get a bit creative with the cold packs. Mini-fridge was stocked, so grabbed a cold bottle of Moet & Chandon and voila! success! 

All in all, this experience was amazing. The Dexcom and Hawthorne Direct (production company) treated M like a little star, which for a 4 year old was beyond thrilling. It was nice to have the focus of her having Type 1 diabetes be a positive experience for once. A special thank you to Dexcom for giving real users of their product a chance to show our love and appreciation for this life-changing device!


Updated: The commercial is out!! Direct link on the Dexcom website

Or view it here:

For more information on Dexcom, visit www.dexcom.com.