About the Elbowbumpkid

Logan was diagnosed with Type 1 Diabetes when he was 17 months old. We have been fundraising and raising awareness for Type 1 diabetes for several years.

As part of Logan’s plan for his 10 year diaversary (7/11/18), he plans to run two races in 1/18 to raise money for both JDRF and the Friends for Life event. He also wants to fund raise to donate Jerry Bears to families that can’t afford them and send a child to diabetes ski camp. He has several events planned to meet his fundraising goals. For more information and to support his mission like/follow his FB page or this blog for regular updates. Facebook.com/elbowbumpkid

We will provide general updates, reviews of whatever Logan feels like reviewing, as well as updates on our life with Type 1!

origin of elbow bump: https://elbowbumpchallenge.wordpress.com/…/11/first-blog-p…/
Logan’s 10 year diaversary plan: https://elbowbumpkid.wordpress.com/2017/04/27/7112018/

Race donation links:
Logan 10K-https://www.classy.org/fundraiser/890033

Disney shirt fundraiser: https://elbowbumpkid.wordpress.com/…/disney-embroidered-sh…/

Goal met, thanks:

Mom 10K-https://www.classy.org/fundraiser/890013

Logan 5Khttp://www2.jdrf.org/goto/loganmerwin

Mom and Logan 5K for Beyond Type 1 (Jerry Bears & Pen pal program): https://donate.beyondtype1.org/ebkmomsteam

GOAL MET ROI send a kid to camp: www.classy.org/fundraiser/992898

Riding on Insulin ski camp fundraiser (second round):

https://give.classy.org/loganlikestoski

Goal met-Beyond Type 1 PowerUp for DKA Awareness-$250!

We will have many fundraising events through the year! Stay tuned!  Thanks!

 

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Product Review (not sponsored)

Product alert-

If you have insulin in your fridge, you need a Medangel in your life. It just saved EBK’s insulin supply by alerting us to an issue where the fridge needed to be restarted.

How it works-you buy it, load the app, put the sensor in your fridge. When you are near the sensor it updates the app. If anything occurred during the time you were away from the sensor it will give you an alert. Priceless.

Room for improvement-I’d like the app to alert when the sensor isn’t near my phone but that’s in the works. Also you need to replace the unit every year due to battery but you need to with the Tile and so many other items it’s not really an issue for me.

Seriously worth every penny, the cost is less than a vial of insulin!

https://us.medangel.co/

We had a great weekend, first a pod painting party on Friday, then EBK’s first time ever ice skating on Saturday.
 
Guess what? If you fall on your butt enough times, your insulin pump site will die. Pretty sure ice skating at Bryant Park with Sierra was worth the site change in the (somewhat gross) first aid room but his numbers spiked too high from the bad pump site and took a while to be back in range. Next time we will have his pump site on a different part of his body for sure!
 
Day 4 without the first trial pump and we are still missing the automatic suspension feature which helped him avoid some low blood sugars. He doesn’t always feel his lows in time, especially when he’s busy having fun with his friends. That’s when this was the most valuable to him. For me of course it was the night time, since I was back to being crabby yesterday from having to wake up on Saturday night (luckily not last night as I get even crabbier two days in a row!).
 
I am writing a letter to the FDA and Tandem to ask them if they can give it back to us when the trial is over. I could always make some noise but figured it never hurts to ask nicely first. #givemebackmypump

Goodbye PLGS

You know those days where you want to stay positive and motivated but you are focused on how tomorrow will be a challenge…that’s today for us. Tomorrow we give back the Tandem Predictive Low Glucose Suspend pump we have been using for the past few weeks for a clinical trial. Logan’s already in tears over it and I must say I am too. While it’s not perfect, it’s more perfect for us than anything else out there on the market and I find it incredibly sad that we can’t have access to it until more people go through the trial and it has FDA approval. It works, so slap a few warning stickers on it and let my kid have access to it now so he can feel safer at school.

But I did sign a piece of paper saying I’d return it and so did he, so we will. Next we will have 3 weeks on a normal Tslim pump, like ours, which we will return the day we start the holiday break. Not looking forward to going back to normal but we will use our new knowledge on where L dipped the most to adjust his basal rates during the school day and hopefully help him maintain his “ready to learn” mode.

We hope that this technology comes to market by next summer for all his swimming and activities, also for all of you that need to make a pump choice. While this technology was not perfect, it definitely reduced the number of low blood sugar episodes and kept him in a safe range at night, which was our priority. Now it will be back to me being his pancreas at night again, a job I treasure and dread simultaneously.

One thing we won’t miss is changing L’s sensor every week. It can be 9 years or 100 and he will love the data/alarms but doesn’t love the insertion. Typically we let it go 2 weeks and then change it but for the study we have to change it every 7 days like clockwork. Which of course ran out for us at an event Tuesday night so we did it as soon as we got home. His Dexcom continuous glucose monitor is only one tool in our arsenal but it’s the most important one to us!

Pump Trial Update

It feels like just yesterday that we picked up the Tslim with threshold suspend for L’s pump trial but we will be returning it on 12/1. I can’t begin to express how amazing this technology is. It’s not a cure and it’s not perfect but it’s definitely a game changer. Imagine not having to wake up at night for a low blood sugar alert? Imagine him watching a movie with friends and not having to interrupt for him to throw smarties in his mouth? This and more is achieved with this new (new to Tslim) technology! A great example of it in action is after pasta and milk sometimes he goes low, then spikes. We improved on our technique with sugar surfing recently but with almost no effort this pump maintained a flat line for us. Keep in mind we had to give him the right amount of insulin for this meal, which we did, but this pump avoids a lot of the fluctuations we usually see.

What needs improvement–it doesn’t always catch the drops fast enough when he’s on the move. This applies during gym or a period of high activity. When it doesn’t, he has to make the decision to treat, or wait and see if the pump will even him out enough. He’s 10 and can’t always make the right decisions when he’s low so we hope that the sensor will catch those faster in the next generation.

While we have to return the pump, what we don’t have to return is the meter they gave us with it, the Accu-chek guide. Hands down, this is the best meter we have used in years. We are switching to these strips with our next shipment and will pay out of pocket if our formulary doesn’t cover them next year. It’s simple to use, has a light by the strip area, the vial doesn’t let strips fall out and it’s super accurate. Logan loves it!

We will summarize our experience after the trial is over in January but Tslim users should get excited about this update that will hopefully be released in mid 2018!

Final Fundraising Totals for 2017!

Thanks to all who have contributed to our fundraisers, here are the long awaited totals! We love that our family was able to do this as a celebration of Logan’s 10 year diaversary in 2018! We will continue the celebration in 2018 with a big party when it gets warmer and other fun play events!

We are still going to be lightly fund-raising for JDRF to try to meet Logan‘s $5000 goal to beat the adults. If we don’t make it (he’s about $700 short) we are going to apply the $1500 check to Doug’s Jdrf ride next year. Win-win either way. So if you want to hire Logan for Black Friday shopping, have your snow shoveled, lawn mowed, or any other small errands he is your guy!

 

Honor Roll!

As we inch closer to World Diabetes Awareness Day on November 14th, we want to take a moment to thank each and every one of you that contributed, sometimes multiple times, to our fundraisers for Logan’s 10th diaversary plan. Whether we know you from work, the type 1 world or real life, we appreciate every dollar and kind note you have contributed. You are ALL our tribe!
 
Still have room for more names (and yes the honor roll will be used for a project next year) so please donate this weekend if you are able and you haven’t yet!
 
Want to see Doug in spandex shorts ride 25 miles on a bike next year? If Logan has $5K in donations it will happen! Then donate to JDRF here: http://www2.jdrf.org/goto/loganmerwin
 
Want to help Logan meet his online CWD goal for the special kids event? Then donate to CWD here:

Yale day!

One aspect of our lives that is frequently discounted related to Type 1 is time. Not just lost sleep time, but lost time changing sites, sensors, treating lows, treating highs….and at doctors offices. But some of it is by choice!

Yesterday while many kids were out having fun on their day off, Logan spent over 8 hours at Yale. Why? He was scheduled for his usual endo appointment and some diagnostic bloodwork (which we ran out of time for and have to go back) but the main focus was ending a clinical trial and starting another. The trial we ended was a 4 year study where he had to go through intelligence testing and an MRI every year, as well as have his sensor data collected at certain intervals. The positive side is through the trial we were alerted to potential additional issues with Logan and received a lot of focused attention when we needed it. While we won’t miss that trial, the new one is awesome!

Logan has been selected to try out a new insulin pump feature that will automatically suspend his insulin delivery if it “thinks” his blood sugar will be below 80 within a set period of time. This is not an artificial pancreas but merely an additional layer of protection for my active kid. He was randomized to have the insulin suspend feature for the first 3 weeks, then the second 3 weeks he will be on a normal pump without that feature.

For every trial that they ask us about, I have them explain it to Logan in plain english and ask him if he wants to do it. He has said no several times so we know he only participates in the ones that interest him. He’s really excited about this one except for the fact that he has to give it back in 3.5 weeks—since we are through the first 24 hours and I haven’t heard a low beep once.

The doctor that was with him for most of the day told us he was an absolute delight to be around and besides fidgeting constantly (um wouldn’t you if you were stuck in a room for 8 hours) we should be very proud of his commitment to helping others. And we are!

Speaking of helping others, less than a week left to donate to Logan’s two fundraisers, one for CWD and one for JDRF. Not much left to go towards his goal on both so get your free tax deduction and contribute today if you are able!

http://www2.jdrf.org/goto/loganmerwin

https://www.classy.org/fundraiser/890033

Diabetes Awareness Month

We promise not to be too overbearing this month but this is a great opportunity to educate and raise awareness.  While I had a post on my personal Facebook earlier today noting how much we value our very visible Type 1 tribe, I also want to talk about the invisible aspects of Type 1.

Like the mini fridge that’s in my office with Logan’s insulin and a temperature monitor to alert me if it goes out of range. Logan can’t live without insulin and it’s important to us to protect it from temperature fluctuations.

Like the mountains of supplies we have to obtain from varying suppliers monthly/quarterly and track shipments, incorrect billing, negotiate authorizations and ensure the correct supplies are sent. It’s honestly more work than I ever let on or tell Logan. I want to protect him from that for as long as possible.

Like his medical expenses–instead of a college fund, we are focusing on saving money for medical supplies when he grows up to protect him for insurance/job changes in his younger years. Our medical expenses average $7K-$10K a year so thinking about how much it will be 10 years from now is scary.  We are hopeful the advocacy groups will make progress on insulin and supply pricing but for now we can’t count on that and his medical supplies have to be top priority.

Finally (for now), his pain. Sometimes it just hurts. A new sensor can go in badly. He needs an injection due to a bad site. He falls and rams his pump cannula in too hard. This child is active and moves around constantly with “things” attached to him and thrives despite his disease. The picture here is recent. We had a bad bottle of insulin and needed to give him a shot from a good one to avoid DKA. It was very traumatic as he was super high and emotional, and it had to be in his belly which we usually avoid. We always have on our brave faces but sometimes it just hurts.

Thankfully most of the time it doesn’t as it’s just a normal part of our day to day lives. Most of the time he lives his entire life as any other child, he just needs to do a few extra steps to keep himself safe.

Finally, I know some of you have asked for an almost final Fundraising update for our 10 year diaversary goals so here it is–

So far we have raised $1488.00 for Beyond Type 1 (above goal), sent a kid and Logan to Riding on Insulin ski camp (met goal),  $2610 for JDRF and $5119 (online classy) for CWD–getting there. We are still fundraising to meet Logan’s goals for JDRF and CWD until November 14th so get in your year end tax deductions and donate today if you are able!

JDRF: http://www2.jdrf.org/goto/loganmerwin

CWD: https://www.classy.org/fundraiser/890033

Hat Day!

Hi all! Logan is organizing a hat day at his school to benefit JDRF on World Diabetes Day which is November 14th. He arranged it himself and the school is super excited to support. Maybe you can do the same at your school? I realize walk season is over but advocacy never ends or perhaps you didn’t have time to do a walk team this year. You can donate the proceeds directly to JDRF or help Logan meet his JDRF goal for the 5K he’s running in January! Anyone who arranges a hat day and donates the $ to his JDRF link directly is eligible for prizes!! http://www2.jdrf.org/goto/loganmerwin

A pic of our flyer we are using is below. You can use the same or modify but I recommend simplicity. We are happy to help you coordinate, feel free to message me!