Tuesday, September 30, 2014

2015 JDRF and Children's Congress - Apply NOW

One day in 1999, long before our youngest was diagnosed, a little 9-year old boy named Tommy and several JDRF families gathered together to discuss the need to get the faces of T1d in front of research funding decision-makers.  Those sweet faces included not only Tommy but 150 kids ages 4 to 17 and those research funding decision-makers included each state elected official in Congress.  The impact was enormous as it was hard to deny the need for a cure after hearing each child's story.

Since that first meeting on Capital Hill, JDRF has been sending a fresh group of 150 children each and every single year as representatives living with type 1 diabetes from each of the 50 states, including the District of Columbia.

My youngest applicant hopeful for Michigan JDRF Children's Congress

Those children meet to share their personal diagnosis story, interact with lawmakers and commit to continuing on with advocacy efforts after the JDRF Children's Congress is over.  The impact is long-last not only for the child living with type 1 diabetes, but for everyone who hears their story.

My oldest applicant hopeful for Michigan JDRF Children's Congress

Personally, after my own two children applied, I found hearing their words on the application essay to be so powerful that I was moved to tears and had to leave the room.  And this is ME, the mom who has been with them from day one and feels slightly numb to most re-telling of the stories.  It's THAT powerful when it comes from the voice of a child.

Past JDRF Children's Congress Delegates from around the United States
July 13- 15, 2015 marks the next JDRF Children's Congress and applications have already started filing in from hopeful children and families that would love to attend.  What is important about taking the time to complete an application is that even if a child and family is not chosen, then the information within the application, including pictures and heart-felt letters, can still be shown to lawmakers to emphasize the need for a cure.

To complete an application for JDRF Children's Congress, please click this link.

This type of grassroots advocacy is important as much of the necessary funding to keep projects moving forward (artificial pancreas, smart insulin, encapsulation) is happening due to demonstrating the need.

To sign up to become an Advocate for JDRF, please click this link and follow the instructions on the home-page.

Even if you do not want to complete the JDRF Children's Congress application or sign up for JDRF Advocacy, you can still make a difference.  Send your local JDRF chapter a quick email that says 'thank-you' for all of the hard work that they are doing.  I did that today and made sure to say tell them how much I appreciate their efforts.  It has been eight years in this journey and our healing threads are interwoven with every person that we have met with a T1D connection - the greatest being our friends at JDRF SE Michigan, West Michigan Chapters and Midwest Region, and our Mott Children's Hospital.  Their kindness has shaped my children's belief system and we have undying HOPE for a cure.

Like Nick Jonas sang at JDRF Children's Congress one year.... a little bit longer and I'll be fine.

On behalf of all of the children, teens and adults living with type 1 diabetes, you CAN make a difference just by sharing your story.

Individually, we are small, but together we are millions of people feeling the effects of living with type 1 diabetes.  It is time to get that CURE!!!

#curet1d #jdrfchildrenscongress #michigancongress #jdrfadvocacy #naturallysweetsisters

Friday, September 26, 2014

T1D Perks

Thank you to Mott's Childrens Hospital and Dreams and Wings!
In living with type 1 diabetes for such a long time, the girls have discovered that sometimes, there are certain fun things that come along with having an autoimmune disease.

We call those fun moments 'T1d perks'.

That ability to understand that having T1d perks is also a wonderful coping mechanism helps to stop the burn-out from answering those 800 daily questions that living in the T1d world demands.  

A couple of weeks ago, we visited our local airport, courtesy of Dreams and Wings through U of M Mott's Childrens Hospital to tour their helicopters and take a flight over the town in a little four-seater airplane.  Since the event was through the hospital, children from all over attended.  Some were diagnosed with T1d and some were diagnosed with other ailments.  All were excited to be there.

That T1d perk not only brought smiles to everyone that attended, but also lifted up my girls and gave them another view of how many different diseases and struggles that many children (and adults) face.  
This is not to say that it diminshes what they go through while living with T1d, but it reinforces empathy and compassion for others.  Everyone has something....

By the days end, both of my girls left convinced that they are sure of their future calling and surprisingly with as much fun as they had, it wasn't becoming a pilot. 

Both daughters explained that they decided to pursue a position within the medical field.  My oldest daughter spoke quietly about becoming a doctor and the youngest said that she wanted to "Do something with research.  There has to be an answer to 'why', mama."

It's too early to tell for sure, but my hope is that they do continue to follow the road that leads to happiness.  That would be the best T1d perk!

Tuesday, September 23, 2014

Taking MySentry For A Test Drive

I am surely behind on discussing this.  Like all of the cool kids, most of you have already used or at the least heard about Medtronic's MySentry.

We are borrowing one for a short time to see how it works for our family, most especially, our teenager that loves to stay up and sleep in until noon on the weekends.

Not having used it for very long, I am not overly qualified to give raw data regarding accuracy or technicalities.  I can only speak about lifestyle and really, just our lifestyle of living with two girls that also live with t1d.  

First thing we noticed is that this baby is easy!  The set-up? Open box, plug, sync and play.  

Literally, two minutes after walking into our front door, oldest daughter spied the box and immediately had it up and running.  I know she is technology maven, but it was so simple, I am certain anyone could do this.  Any by anyone, I mean me.

After marveling at her bg number - because this was a real school day number - totally amazing!, we found ourselves noticing some of the other cool features.  The length of time on her Enlite sensor, the amount of insulin in her pump and the life of her battery.  Super fun to see.

As a parent, it was also great to once again watch the blood sugar without pestering my oldest daughter.  Her younger sister is wearing the Dexcom and I often hold the receiver while she plays.  With the Medtronic 530g, much of the daily data is in my oldest daughter's hands and I am unable to see what is happening unless I sneak a peek.  This solves that issue.  In fact, we set the My Sentry next to the t.v. and had fun viewing her trends as we watched a movie.  The little sister Dexcom was placed alongside, so 'Dexie' didn't feel left out.  Yes, we are weird family.

The alarm is also loud.  Like L-O-U-D!  When signal was lost, the MySentry let us know immediately.  Even our cat stopped and took notice.  Having that feature in the middle of the night would be comforting.  As this is about the size of an iPad, taking it along to a sleepover would be no big deal.  

Would I purchase one? It is so early in our learning, that I honestly could not say.  Insurance coverage has been approved in some cases.  That would be a factor in our decision, especially with two children that require twice the amount of medical supplies.  

My advice is to give it a try and see if it works for your lifestyle.  If you do or have tried My Sentry already, drop a comment and let me know your thoughts.  I would love to hear your feedback.