Raising Money while Lowering Blood Sugar

Our local chapter of JDRF held its' charity gala this past weekend. While this was their 10th annual Imagine Gala, this was our first time attending. We were blessed to be invited to a corporate sponsor table (Charles Schwab for the win!). I was thrilled to be attending, and my husband and I got all dolled up to attend a special "grown-ups" night. I had a new dress, did my hair and makeup, my husband Youtube'd how to tie a tie properly. We drove the 45 minutes to the venue, the lovely Loews Portofino Bay. Let me tell you, what a nice event. Silk aerialists, live band, Dr. Nicole Johnson, a fast-paced live auction.

What I wasn't expecting in all this glitz and glamour was that my daughter would have some kind of excitement, adrenaline, or otherwise freak occurrence with her blood sugars while we were gone. While eating the first course, I get a text from my mother (our babysitter for the night), saying that M's BG was 440. Crud, what did she have for dinner (PB&J). Did she get the proper dose via the pump? Did we give her a proper pre-bolus time for white bread? We hadn't checked the Nightscout yet to realize that her blood sugars were going off the charts (parent fail). My husband walks my mother through giving insulin on the new pump and we finish our course. 20 minutes later my mother is calling me to tell me that her blood sugar is now 561! That is literally the highest reading she's ever had, diagnosis included. My husband is ready to ditch the gala and go home, but I know that it's a long drive home and immediate action is needed. So I step out of the room, leaving my sea bass dinner behind, and walk her through the steps to give a manual injection, something we haven't had to do in over 3 years. My poor mother had to deal with a crying M, who doesn't remember the MDI days and only knows it's a "shot". Then she has to check blood ketones, which apparently throws her threw a loop because she doesn't realize there are separate meters for ketones vs. our normal BG checks. After figuring out why the "meter" isn't accepting the strip, we get it sorted out and luckily there are no ketones yet. My sea bass is gone from the table,  I owe my daughter a new toy, but at least we have the insulin on board. Crisis averted?

Fast-forward to one hour later. A blip in time, and my mom texts to tell us that my daughter's BG is 158 already, with over 2 units of insulin on board still. Nightscout is down for some reason, so we can't see the trend ourselves. So now it's the scramble to give her a meals worth of carbs to make sure she doesn't crash into a low. $650,000 later, the gala is ending and we head home to relieve my mom. A report of a 68 means even more juice. We get home and end up giving her even more carbs to get her through the night.

It's nights like these, while literally trying to raise money for this disease, that remind us WHY it is so important to forge on towards a cure. 

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 :/

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. 

The Worst Kind of Post



This past weekend was a major blow to the Type 1 Diabetes Community. We lost two little kids to complications from undiagnosed type 1 diabetes. One was Kycie Terry, 5, who suffered a traumatic brain injury due to brain swelling from DKA (Diabetic Ketoacidosis) in January 2015 and succumbed to complications on July 11, 2015. A day later, we learned of David Brown, 4, whose DKA case was too advanced and he succumbed within days of initial diagnosis.

 

Unfortunately, these two cases are just the latest in a long line of undiagnosed children becoming casualties due to a lack of awareness of Type 1 Diabetes symptoms, and a tendency for doctors to avoid looking for the "zebra" amongst the horses (flu, bladder infection, viral infections, stomach viruses, asthma, sinus infections, UTI's, dehydration, anxiety). Here is a video from the parents of Rocco Kuehl, a Florida boy who had just celebrated his 1st birthday. His parents have set up a charity Drive for Diabetes Awareness in his honor to raise awareness of type 1 diabetes. It is heartbreaking to hear these preventable stories.

 

 

 

 



Something has to give. Over 1.25 million Americans live with Type 1 diabetes, and the rates are growing at a staggering percentage. There is no known cause or cure. Type 1 diabetes is too often a "silent killer" of not only youths, but also adults. This is not type 2 diabetes, and this is not something to laugh about.

 

How is it possible that so many people are still dying in a first-world country from a condition that can be diagnosed for pennies??  Doctors will swab for sore throats, urine is collected for UTI's, ears are checked for possible ear infections. Why are we not checking glucose with a single drop of blood or a urine dipstick for kids who present with these symptoms? Flu-like symptoms in diabetics means they are already progressing into a dangerous complication, known as Diabetic Ketoacidosis (DKA). DKA has symptoms such as breathing issues, fruity smell to their breath, vomiting, stomach pains, dry mouth, in addition to the classic diabetes symptoms of excessive urination (frequently shows as bed wetting in younger children), extreme thirst, sudden weight loss, extreme tiredness/lethargy, increased appetite (although can also present as decreased appetite).  Don't guess, CHECK!!


This is an Infographic that can be saved as an image, printed and distributed to your
local pediatrician's office(s), clinics, waiting rooms, etc. Spread awareness and save lives!



This is an Infographic that can be saved as an image, printed and distributed to your
local pediatrician's office(s), clinics, waiting rooms, etc. Spread awareness and save lives!

For more information on DKA prevention and more posters available for download, visit www.testonedrop.org

Walk to Cure Diabetes

 

It's time to pump up the excitement for the 2014 Walk to Cure Diabetes! JDRF holds walks all over the country to benefit the research to not only improve, but CURE type 1 diabetes. This is our first year doing the walk. Our Orlando team is named Benjamins for Miki's Mouseketeers, in homage to my daughter M and my cousin Ben, who passed away at age 17 from T1D complications. I made up the above picture to kick-start my fundraising campaign. This photo, taken less than 2 weeks after her diagnosis, really shows exactly why I am so invested in this. She is pure joy. If you would like to donate, please click on the above link to be directed to our page. Donations are due before June 30, 2014.

 

 

UPDATE: We started out with a goal of $1,000. We ended up with $3,075 as of the walk date. We had a few business associates donate, as well as our wonderful friends and family. Women I went to high school with (and haven't seen in over a decade), as well as my MIL's gardening internet club members all donated. I am overwhelmed by the generosity of the emotional and financial support we received for this year's walk.