About the Elbowbumpkid-facebook.com/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 ran two races in 1/18 to raise money for both JDRF and the Friends for Life event. He also raised $ for Beyond Type 1 and Riding on Insulin for a total of over $25,000 between the 4 nonprofits!

For 2018, we are focusing on awareness and a $10,000 for 10 years fundraising goal! We also are forming a walk team for the first time in years, sign up on our Facebook page and join us in celebrating Logan’s 10 years living and thriving with Type 1 diabetes!

For more information and to support his mission like/follow his FB page  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…/

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

 

 

 

Advertisements

Diabetes Bling Video

Here’s direct access to EBK’s diaversary video about diabetes life in a minute! For those of you who saw this at Friends for Life, it’s a little different as we took the other kids out of the video. Enjoy!

 

Dexcom update

Many of you asked for graphs from me wearing the Dexcom in solidarity with Logan for his 10th diaversary. As I mentioned initially, this was to experience a snippet of his life and he’s been asking me to do this for years. The timing was appropriate since he just celebrated his 10 years with Type 1 on July 11. It’s been 3.5 weeks since L inserted the first sensor on me. It seemed odd this morning to not have it on after it fell off last night so I can definitely see how adults and kids with Type 1 just get used to it wearing it. The transmitter I was gifted has 3 more weeks left to it, I will continue until it dies. EBK absolutely loves me wearing it and educating about Type 1 when people ask what it is. 

.

My alerts were set at low 65 and high 150 or 180 depending on the day. I had two insertions in that time (3rd tonight) as both sensors lasted a while. The second hurt a little-EBK informed me that’s the breaks, sometimes it hurts and other times it doesn’t. Anxiously awaiting his G6 arrival so it never hurts for him again. 

.

I will keep posting along the way but I learned that I sometimes strive for too much perfection with EBK’s  numbers when a non type 1’s numbers aren’t always perfect. Several days had no alerts at all, expected with those parameters. That said, I was volunteering at an auction last week and there were a bunch of Type 1’s around me and we heard a high beep. It wasn’t them, it was me. No food, no heat to impact it, just a normal moment for me. I did have several high blood sugar moments which we were surprised about as I’ve typically experienced low blood sugar episodes randomly over the years. Some related to after meal, some not. Will continue to track this until the transmitter dies.

.

Feel free to ask questions after looking at the data! 

 

489B222F-42F0-4EB5-A6E4-13A54E6BCE44

What’s your diagnosis story?

As part of our reflection on L’s 10 years living with Type 1, we wrote a letter to the pediatrician who diagnosed him. Many of you know our diagnosis story, here’s an abbreviated version—

L was a baby and had been showing signs of being sick for weeks after a reaction he had after his 15 month visit. Signs we noted but didn’t take action—drinking more, not eating as much, being crabby—we wrote it off as a kid phase for a couple weeks. Then we were at a birthday party and he wouldn’t talk to any of the other kids, he just ate goldfish, drank water and wouldn’t leave our side. We went to a good burger place on our way back and tried to give him french fries but he wouldn’t eat it (I still can’t go back there). Over the next several days the symptoms continued but seem to get worse and we called the pediatrician when he had slept in an extra few hours a couple of days in a row. Our kid didn’t sleep as he always like to jump up and enjoy the day same as he does now at 11 years old.
.
they had no appointments available but scheduled one 3 days later. We went about our day and received a phone call telling us to bring him in. We were pleasantly surprised as someone must’ve canceled. Little did we know they would be waiting for us at the door,pretty much grab our child from our arms, gave him a blood sugar test and told us there was a room waiting for us at the Children’s Hospital and go there immediately. The doctors office had recognized the signs and symptoms that the receptionist wrote down for the nurse, brought it over to the doctor and he said bring them in now.
.
While we spent some time getting educated at the hospital, it was not nearly as traumatic as if we would’ve waited for the initial appointment. 3 days later=DKA (diabetic ketoacidosis). This is what we need across the country, for all doctors offices to be aware of the signs and symptoms of Type 1 diabetes. We wanted to take the time to formally thank them and let them know how important it is to constantly educate their staff and peers do every diagnosis story is like ours.
.
Please consider doing the same If your pediatrician or doctor diagnosed immediately. Until the DKA campaign is in every state, small reminders like this can help save another life!

Riding on Insulin

We would love to have summer fever here but still 22 days left until the end of the school year! Hard to even think about next winter but we are! In addition to Logan’s goal for JDRF this year he’s also fundraising for ski camp again with ROI next winter in Mass.

ROI is an amazing nonprofit that runs action sports camps for kids with Type 1. Logan learned to love both skiing and mountain biking because of them over the past couple of years. For those of you that have asked in the past how to contribute to impact Logan directly, this is the fundraiser to do that!

https://give.classy.org/loganskis

Hot Wheels Family Day

We had such an incredible weekend celebrating the 50th birthday of Hotwheels at Randys Wooster Street Pizza Shop in Manchester CT and raising awareness of Type 1 diabetes for JDRF Greater CT/Western MA. I have so much respect for Logans passion after being around the large group of true experts this weekend. Thanks to Randy’s team we were never at a loss for entertainment or food. There was an amazing life-size hot wheel Twin Mill, kids races that kept my son and his friend entertained for hours, a vending machine with Hot Wheels in it , Hot Wheels trivia contest and so much more.
.
There were so many “best parts” to our weekend. As most of you know Logan wants to be a Hot Wheels designer. Thanks to Larry and Randy he signed autographs for people just like a famous designer would. He was in heaven and felt so special, especially spending so much time with his mentor Larry. He loved trading hot wheels with everyone, I was truly touched by this entire group that had never met him before and welcomed him like he was one of their family.
.
The weekend ended with an exclusive ticketed dinner with Hot Wheels designer Larry Wood, with a silent auction to benefit Logan‘s fundraising for JDRF. I was extremely amazed and humbled by the generosity of the attendees that raised $3000 towards Type 1 research. Logan made an impromptu speech (YouTube link below) which really tugged at my heartstrings. While we may or may not see a cure in his lifetime, we are grateful for the advancements that keep him healthy and able to focus on life as a kid. I heard so many times this weekend “but he looks so healthy”. He has such a positive attitude and is an amazing diabetes advocate. I love how he embraces life and his condition. For as long as I’m breathing, I will work my hardest to continue to fundraise for the nonprofits he supports.

Check out his speech:

https://youtu.be/85pSl8FrelU

As a reminder, we have a walk team for the first time in years. Join our team and walk to celebrate Logans 10 years living and thriving with Type 1!

 

http://www2.jdrf.org/site/TR?fr_id=7438&pg=team&team_id=259245

Logan’s other mothers

Logan loves attending Friends for Life. This was the last year for the Anaheim location so we surprised him at Christmas with the trip which we took last week.
We then had an amazing three days with our FFL family. When I say family, it includes families we bonded with at previous FFL events, the volunteers we have grown to love and some folks I never met before but they are now family. I wish I could fully articulate what these events mean to us but it’s impossible.It’s a freedom that we don’t experience elsewhere. If I take a break, I never have to worry about Logan as he always knows his “other mothers” will be around if he needs anything. His favorite “Miss Laura” is always hovering somewhere, just waiting to give someone an answer. Joanne and Kristin will keep him in line if he tries to go double fisted with his fruit punch. He will always be safe—We were at the pool and I needed to run to bathroom, when I say run it was a 25 minute trek.He came back with his friend to test and was on lower side. He was going to make at the decision to go swim some more as he felt fine but his “other mothers” Leigh and Heather guided him to stay out of the pool and take a rest with a juice box. When I came back he was ready to swim like a fish again.

Every single day I interact with someone from my FFL family. Whether I’m working on auction items, school nurse woes or comparing notes on life-we are all always mentally counting the days until our kids can be around their other mothers again. Then when it’s over, we talk daily about whose bracelets are still on, when/where we will attend the following year, who can meet up during the year….in the meantime our kids text and FaceTime, always having that connection with someone they can identify with.

Thank you Jeff and Laura, for creating this special place for our kids to learn, bond and grow. Where parents can learn how to speak up for what our kids need (thank you DPAC), get front and center with the companies creating the latest technology that keep our kids safe but most of all knowing that we are never, ever alone.
Happy Mothers Day to all of Logan’s other mothers, both from FFL and beyond!

Customer Service

I spend countless hours of my time on the phone with medical supply companies and insurers. The other night I spent 42 minutes replacing an $80 item. A friend has spent two weeks getting approval to send back a supply shipment that she never asked for.
.
Therefore it was a pleasant surprise tonight when I spent less than 4 minutes on the phone with Tandem replacing the battery cover on EBK’s pump. We love the excellent customer service we have received since moving to their pump in 2016. During our recent trip we had the opportunity to visit Tandem Diabetes Care and take a quick tour of their new manufacturing facility. EBK loved seeing the details behind how his pump is made. We were impressed with their quality control and can’t believe how much work is involved in making one pump. He asked a lot of questions and everyone was super patient with answering them, which was especially awesome since we were late due to traffic. We loved our short time at Tandem and will visit again if we go back to CA! Note before I get a swarm of emails that we don’t have our PLGS pump back and have to patiently wait for the public release like everyone else. But that’s ok because we know it’s worth it!
#loveourpumpchoice #pumpthatsupdatednotoutdated#givemebackmypump

Hot Wheels Family Day

If you are local and love cars, you won’t want to miss Family day on Sunday May 20th, part of Hot Wheels 50th Anniversary weekend. This event will be in Manchester at Randy’s Wooster St. Pizza. A portion of the proceeds from the silent auction and blister pack photo session will be donated to JDRF!
Consider signing up for a pass for the weekend if you want to visit the paid events too, there are going to be some special guests, an autograph session and so much more!
Visit https://hotwheels50.com for more information on the event!
Unable to join us in May and want to help Jdrf? Join us in October on Logan‘s team!
http://www2.jdrf.org/site/TR?fr_id=7438&pg=team&team_id=259245

TSA Cares

I wanted to take a minute and give kudos to @tsa cares program at Bradley International Airport – BDL. Time and time again they succeed with getting their job done while being amazingly nice to my kid and friendly to all of us. All airports in the country should duplicate their training to eliminate traumatic experiences for people with insulin pumps and diabetes supplies. We took the time a couple of years ago to show them our supplies and it’s paid off considerably as they continue to pass the knowledge through their team.
.
If you aren’t familiar with the Tsa Cares program and you are traveling with your Type 1, call 2 weeks before you are flying to arrange for a Passenger Support Specialist to help you through the security line. Their number is 855-787-2227! I wish I could say the same about our return trip but we educated on the @dexcom which will hopefully help others after us in the future!

How much should it cost to keep a Type 1 alive?

We pick up our insulin at a retail pharmacy this year to avoid mail order issues that we have had in the past, plus it really doesn’t have much of a price difference. We are allowed 3 pickups of a 1 month supply before we have to switch to pick up a 3 month supply. This is the cost for a 1 month supply of insulin for Logan. When I pick up the 3 month supply in May it will be $881 out of pocket at the pharmacy.

This doesn’t include test strips, sensors, pump supplies, glucagon or any of the other ancillary items we need for his diabetes care. In the end, the insulin and a device that tells us his blood sugar are the bottom line care items we need each month to take care of one of his diseases.

The costs are skyrocketing. We used to get a 3 month supply of insulin for under $100 years ago. One year it was over $1200.  There needs to be regulations in place to control these price increases, especially for those who don’t have insurance. There are far too many stories lately of people rationing insulin because they don’t have access to it. Both major insulin makers have programs to help the underinsured but they are income regulated and you have to know they exist. Some will also tell you to go to Walmart and get old school insulin but that is NOT the answer. The answer is to have more affordability and access to care for Type 1’s, not just in the US but around the world.

If you ever have insulin that is within 3 months of expiration and you won’t use it, please donate it to Insulin for Life, find out more at http://ifl-usa.org.

Get involved-write to your senator/representative about insulin pricing. Advocate for an insulin transparency law in your state. Research to see if your state has legislation to allow emergency access to insulin and other life saving meds if the prescription has expired. If they don’t, advocate for it!

We are lucky to have access to insulin, regardless of the price we pay. That said, we know so much more should be done to allow all Type 1’s the same access at a reasonable cost.

#insulin4all