Summer pump break

After several pod failures, dislocated cannulas and pods fall off at school, at the pool and during the night at sleep overs, my daughter decided it was time to take a pump break... (Well, pump break was my interpretation, she actually said she was totally done with pumps and wanted to go back to shots). I didn't realize how thorough she had thought it through and tried to remind her how much she hated the shots and that she'll have to take one shot a day for her basal insulin and on top of that a fast acting insulin shot every time she eats carbs (which means a minimum of 4 shots a day if she lived on a tight schedule of only 3 meals a day...). Why are you trying to convince me not to do it?!" She was totally on to me. "Being on a pump is no picnic either" she reminded me and of course she was right... I had a vague memory of piles of needles, insulin pens, calculating insulin doses, battles around every single injection and then eating around those injections to avoid more. She was only five years old back then and relied completely on us. The pump gave her independence and freedom (well relatively at least) and completely took away the shot struggle that accompanied each and every meal. She could now eat whenever she wanted without having to take an injection, sleep in on the weekends without having to wake up for her basal insulin shot and most importantly do everything by herself. This last part was important for her as much as it was for us. Those 4 (and on most days 6 or 8) injections per day were replaced with one site change (cannula insertion for the pump) once in 3 days (well, in an ideal situation were the adhesive that holds the cannula in place wouldn't come off. The tedious calculations of insulin doses were done by the pump instead of my already exploding brain (once you successfully define and program all the carb ratios, insulin sensitivity factors and basals into the pump). Life have seemingly become so much more manageable and normal. But my daughter, is almost 12 now, and after living with type 1 diabetes for seven whole years, she desperately needed a change. Even if the solution is not superior to what was already in place. I asked her to give me a couple of weeks to catch up on technology, thinking the Novolog Jr. insulin pen and needles we had stored in our medicine cabinet 7 years ago were obsolete and that Lantus insulin is old news. I also explained that I would need to speak with our Endo to get prescription for pen cartridges, for long acting insulin, only to find out that Lantus is not old news and that there is a newer model to our insulin pen that has a digital dial and some memory, but that's about it. No major miracles or magic have taken place flash forward 7 years. Then I was just stalling, waiting for the right moment to make that move, to transition back to shots again, to having needles and alcohol wipes all around the house and calculating doses again. I was dreading that change, especially because it brought back the memories of my tiny 5 year old that had to deal with such a big disease. But then one day, without any warning, the pump just stopped working. My daughter called from school, I was at work, calming her down, promising we'll both be home in an hour, thinking I could fix it (like every single pump failure before). Usually a battery change or a quick reset would do the trick. But not this time, seems like everything was moving to the direction she originally wanted to go. Gradually starting to let go, I talked myself into 'we could try shots again for a while' but still called the Omnipod support line. Some resetting manipulation and error troubleshooting, nothing seemed to get the pump to work again. To their defense I have to say that the replacement pump was waiting on our door step early next morning, but at that point we were already in full swing. 12 hours are too long for someone with type 1 diabetes to go without insulin. Which meant a trip to CVS (thank god they are open 24/7) to get all the supply list we were preparing for the 'summer pump break'. So the change happened faster than planned to my daughter's satisfaction. We also found an app PredictBGL that would calculate insulin doses, insulin on board, make recommendations and even remind you to take your Lantus in time. It's actually way more sophisticated than the pump calculator and  also has a cool feature that shows your predicted blood sugar (based on all the factors that you log into it, and based on the ideal situation that your doses and ratios are perfectly set). It is not accurate of course but gives you the ball park of what you should expect and how far from it your actual blood sugar reading really is - and then based on that would raise possible scenarios and recommend what changes you could make to your ratios and/or basal insulin. It synchronizes and works on multiple devices so I can see her logs from my cell phone as well and make sure things are working and fix it or f not. I am sure there are other amazing apps out  there but this is the first one we tried and loved it. My daughter learned how to use it within seconds and within less than a day took control over the whole thing, injections, logs, doses, everything. And most importantly she's happy with the change, with not having to walk around with a pod or hooked to a pump, especially on these hot summer days. Wearing shorts, going to the pool, not having to worry about pump failures, site changes. This is a different kind of freedom. 

 

Tour de Cure recap: Go team La Prima!

After the bike ride

The big day was finally here. The American Diabetes Association's NOVA Tour de Cure for diabetes in Reston, Virginia. The bike ride event and happening were amazing. With lots of riders and supporters, live music, great food and even a kids' fun tent with tattoos and balloon artist. Red riders (riding with diabetes) received special 'Red rider' jerseys decorated proudly with the words "I ride with diabetes" which attracted lots of warm and welcoming cheering from the crowd when spotted during the race and especially at the finish line. With 'go red rider' and 'you are why we ride' words from the crowd, our daughter felt comfortable enough to wear her 'red rider' jersey, a present from Bob Sierralta from the American Diabetes Association, with pride.

This tour consisted of 89 teams and 878 riders in total who have raised over $400K!

As I mentioned in my previous post Tour de Cure, my better half and his colleagues from work decided to join the efforts by riding with the La Prima team, formed and captained by Mr. Dave Evans, owner and president of La Prima Food group and Catering by Seasons, who was also one of the event's sponsors. Their team included 19 riders who have so far raised close to $8,000! And the numbers are still increasing! And has my hubby said to our daughter in the videos taken during his ride:"Lia, this is all for you!"

To all of you, who organized, donated, rode bikes, volunteered, cheered and supported, thank you from the bottom of our hearts! Together we will make it possible. Together we will stop diabetes.

With Mr. Dave Evans (right) 

Tour de Cure

He does it for her

So the American Diabetes Association's  Tour de Cure is coming up and my better half is preparing for his bike ride. His rider profile on the Tour de Cure website has attracted many supporters, including family and friends. Their generous donations go a long way and with their amazing support we have by far exceeded our fundraising goal. There are no words to express our deepest appreciation to all of you who have donated, supported and liked. We are lucky to have such good friends and family!

Some info: The Tour de Cure is a series of fundraising cycling events held in 44 states nationwide to benefit the American Diabetes Association. In 2013, more than 65,000 cyclists in 89 events raised more than $26 million to support the mission of the American Diabetes Association: "To prevent and cure diabetes and to improve the lives of all people affected by diabetes".

Hubby's work, La Prima Food Group Inc. has been a proud supporter and sponsor in the past couple of years and this year again will provide the food on the day of the event. The owner and president, Dave Evans, which is also on the list of donators, will also be riding. He has formed a bikers team and invited his employees to join. The medal he has received last year from this wonderful partnership with the American Diabetes Associaion is proudly decorating our daughter's room.

For us it is not just a bike ride. It is not just about those 29 million people affected by diabetes, it is about our own private diabetes story, it is about our daughter. Since our daughter was diagnosed with type 1 diabetes at 5 years old, we have been determined to not let diabetes STOP her from doing the things she loves and hope that together, one day in the near future, we'll be able to STOP diabetes.

Career day or what it's like to be a scientist Part I

After learning that kids nowadays mainly dream about becoming dancers, singers or chefs (well, TV shows are all about that now) and less and less about any of the S.T.E.M (Science, Technology, Engineering and Math) related professions I decided to volunteer as a speaker on career day at my children's school. To tell the kids a little about what it's like to be a scientist and give the list of professions a bit of a balanced look, at least for one school. Although a TV series about scientists would be nice...

I decided to make a Powerpoint presentation. After over 14 years as a scientist, hundreds of lab meetings and formal and informal presentations, this has become the way I feel most comfortable presenting and also make sure I stay on track and within time limits. But this presentation was different, it was meant for the toughest audience of all - kids. 

I wanted it to be educational but more importantly fun and interesting while not exceeding 20 minutes so I can leave about 10-15 minutes for questions. And to include visuals. Since most of the material I work with is considered hazardous I had to stick with photos. So I took pictures of my lab space, my bench, my desk, the tubes and pipettes. And brought my oldest daughter (a.k.a child #1) to model the safety gear  - the lab coat, goggles, gloves and general lab safety procedures. I also included photos of myself with colleagues and mentors at the lab from college to graduate school and today and some information about why I chose  this career path, which skills helped me along the way and what are the pros and cons of this profession as I see them. I tested the presentation on my own kids and after some modifications per their suggestions and quite a lot of giggles, I felt it was ready to be launched.

For career day I came with my usual sport-casual attire that I wear to work and a lab coat. The counselor was very specific and introduced me to the kids as a molecular biologist rather than just a scientist.  The kids, I must say, found that extra piece of information very exciting. They were fascinated by even the smallest piece of information and liked my cartoon-like illustrations that were featured on my presentation. I was glad I had left ample time for questions because boy they had so many interesting questions that I just wanted to hear and answer them all (well, at least the ones that I had answers too, these kids are smart!). They wanted to know about school, if I was a good student and if I liked math... I kept my answers politically correct but was honest. I told them that as a child I didn't really liked math and didn't really like to study much either (except a handful of subjects, biology was one) but I also said that I now regret not putting more efforts into math because I now see how all of these things that I thought were just boring become handy, and I meant it... They also wanted to know if I have already found a cure for a disease. I had to tell them that these things take a lot of time and persistence and they consist of small discoveries that build up, and that I feel proud and lucky to be able to take part in making these discoveries that pave the way and facilitate the bigger ground-breaking discoveries, even if I won't be the one to get the credit eventually.

They also wanted to know if I get to make a lot of money or be famous... Well, that brought us back to discuss different important scientific discoveries and sparked a discussion about what success means to each one of us. I'll discuss more info from my presentation on Career day - Part  II.

I felt good about being able to contribute a little to these kids' future career choices and make sure they know that science is an option. I was also happy to see how it made my own kids proud. And also to read the thank you letters they brought home from their friends on the next day. I received great feedback, so many good comments and was surprised by the number of kids stated that my talk inspired them to consider science (they actually specifically said 'molecular biology') as a career.