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 :/

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