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

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!

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.

A T1D Mom's Miscommunication

With school back in session for around three weeks, teachers are busy with assessing placement.

My own two have been taking tests to see where they rank and also, to provide a guide to their future years' learning.

Mostly, I sit back and wait to see what happens.  Certain tests are more important than others, but at the end of the day, it is always about 'doing your best'.  That's all anyone can ask for.

Today, as I was wrapping up part of my at-home desk work, my personal cell phone beeped with a text update.  Glancing at the clock and realizing it was not an expected lunch time, I was instantly on high alert for whatever it was about to tell me.


Youngest Daughter:  Mom, I have to tell you that I did really well on my SRI (standardized reading assessment) and I am 238.


Insert a panicked look on my face.  A 238 SRI score isn't even near a 6th grade reading level.  She had to be having a HIGH blood sugar.  Or worse.  Or did she just blow it off?  How on earth do I respond to her text?

Silence.  

More silence.

Finally....




Me:  Okay.  Well you did your best and I am always proud of you.

Youngest Daughter:  Thank you!  I am proud too.


Huh?  Her comment makes no sense to me but I figure that a text while she is at school is not the time to deal with it.



Later that day........




Not too much longer and I am anxiously awaiting her arrival.  After the bus drops her off, I casually broach the subject.



Me:  Soooo.  You sent me your SRI score today.

Youngest daughter:  Yes, wasn't it great?

Me:  A 238?

Youngest daughter:  What?

Me:  Did you get a 238?

Youngest daughter:  What in the world?  No, I got a 1028.  Where did you get a 238?

Me:  From your text message.  Wait, you got a 1028?  That's awesome!

Youngest daughter:  Oh geez mom.  That was a 238 mg/dl!  Seriously?  You seriously thought that I scored a 238??


Yes, this is a very true story.  

Establishing a Diabetes School Team

My philosophy with school and T1d is that the best outcomes happen when you take the time to establish a diabetes team.

In middle school, besides the Naturally Sweet dad and I, our diabetes school team consists of our medical doctors, my children - yes, they are key players on our team, a 504 coordinator (our assistant principals), the teachers, the lunch staff, the bus garage coordinator and our bus drivers.  Each person is instrumental in ensuring that our children get an equal and fair shot at academic success.

And if you haven't done this, don't fret.  There is still plenty of time to open the communication lines and start. 

To help start the conversation, each year I create/revise a 504 document that outlines the accommodations that my children will need to be successful at school.  Since I know that our team is fully of busy professionals, I also create a simple stop-light chart of diabetes symptoms and blood sugar ranges that can be used at a glance.  After updating the documents with current school pictures and symptom changes, I email both documents to our school 504 coordinator and request a meeting to review and acquire proper signatures from each team member.

During the meeting, our diabetes school team reviews not only the 504 document but also a health care plan, acknowledging with signatures, that our hospital creates that outlines the seriousness of T1d.  The health care plan helps to legitimize the need for medical care and to also, connect our school to the endocrinologist - whom is the ultimate resource should anything happen to our children and I am unavailable.

In the early elementary school years, I met with each teacher directly at this meeting.  My children were both so young that I was fearful of their ability to even communicate in general, let alone speak up about highs and lows.

I would (and still do) bring expired Glucagon to allow the team to try out an injection in a calm environment.  The team loved having a chance to see the Glucagon and to know how it works BEFORE having to use it.

Because of my children's young ages (3 through 10 years old), the early elementary school diabetes team also included a floating Parapro that was assigned to assist with checking of blood sugars and counting carbs.

Our schools, like many around the US, did (and still do not) have assigned school nurses.  Having a floating Parapro was a wonderful help to our team.  Teachers need to be able to teach and secretaries (and let's be honest!) need to run the school.

Many people have recently asked me how we went about in securing a Parapro and my answer is simple:  Establish a team and meet.  Coming together with your team will help identify the need to have this invaluable assistance.  In our case, the 504 coordinator listened to the concerns that our teachers had about being able to teach AND watch for sudden blood sugar spikes and drops.  The secretaries mentioned concerns about the office chaos and being unable to immediately assist a child in dire need.  Not to mention that the office is also the adjacent home to the sick room, which ultimately could make a child with T1d much sicker than they started upon entering.

When all of this was brought to the attention of the 504 coordinator, she was able to brainstorm for ideas.  It was then discovered that an aide assigned to another student had room in her schedule to also be assigned to my children.  In sharing services, we were able to accomplish what we needed to effectively keep my children safe.

At the end of the elementary school days, we also spoke to the new middle school coordinator and decided that our children would make the transition without an aide.  This allowed us to start building in a bit more independence with our soon to be 5th grader and to also, teach the 5th grade teachers a bit more as they would become the main contact for care (not the Parapro).

The diabetes team would not be effective without communication.  At the beginning of every year, I still make sure we exchange phone numbers, emails and even set up loose blood sugar testing schedules.  Having us all on one page is what has helped to keep us successful.

I also want to share that there may be times where communication breaks down.  If at any point that happens (and sometimes it does), don't struggle with individual team members.  My best advice is to call a review meeting and go over what is working and what needs improvement.  In the beginning, we had a lot of 'lessons learned' about lunch time, recess and PE, especially in first grade - our first full time/full week of school.  That year, we chose to have three big team meetings.  One in September, one in January and one right before school ended.  As we were the only family in the building with T1d, this was a big eye-opener with setting up a plan for all future students.  We wanted to get it right and make sure it worked.  As it turned out, not much later and our oldest daughter was also diagnosed.  I am still thankful that she was able to transition into a very smooth system.  While it wasn't perfect, it was so much than before we started.

Yes, it is a lot of work and yes, I am exhausted each year.  But it gets easier as the girls become older and especially as they have started to co-captain with me.

Not to mention that our schools now 'know' our family and through learning about successful T1d management have helped us transition to upper grades.  Even though oldest daughter is only in 8th grade, her 504 coordinator has already started laying the tracks for a successful high school transition next year.

We couldn't do that without having our team.

On and Off Middle School Perspectives

School has officially been *on* for a week.  In that way, it is much like an imaginary switch that one of the kids flipped.  Off for summer and then, suddenly on for fall.  

How on earth does that happen so quickly???

The first week happened with much success and only a few minor mishaps.  Day one and everyone was 'on'.  The typical back-to-school excitement meant excitedly packing ahead of time.  Not one bit of T1d preparation was overlooked by either daughter.  Emergency snack boxes filled, paperwork prepared and kids cleaned and polished; literally, as they had enough nail polish out to decorate all of the fingers and toes at their school.

Days two through four were a bit more 'off".  Youngest daughter forgot her test kit one day, her lunch another and her Dexcom on the last day.  Bravely holding back tears, she sent me text messages with each woe.  As this is kid number two in middle school, I had more 'fixes' in my mom bag of tricks and was able to problem solve easily.  We decided she would use the spare meter, buy a hot lunch and test her BG more often.  Problem(s) solved.

And a huge thank you to oldest daughter for being the first to help mom through these many situations because I am quite sure that when it happened the first time and it surely did, those mom solutions were not so calmly ready to go into action.  

Oldest daughter didn't escape entirely unscathed either.  Over the summer, her teen sleep pattern left her with staying up later than me and sleeping until 11:00 a.m. or when I shouted from the bottom of the stairs.  At her school, the start time requires her to be up at 6:00 a.m. and out the door before 7:00.  Even though the Naturally Sweet dad and I suggested numerous 'GO TO BED NOWisms', she stayed up later than she should have and felt exhausted by 3:00 p.m..  Her blood sugars reflected a bit of the exhaustion too and more than normal low blood sugar corrections to contend with.  As the week went on, sleep came more willingly and thankfully, blood sugars behaved too.

More than anything, several great accomplishments occurred.

First, my girls are now bus riders.  As it so happened, this is the first year that I felt comfortable enough to make the switch and it is also the year where my girls are on two different times/routes.  A week in and both have had great success and feel slightly empowered.  Probably strange to kids who have been riding the bus for years, but this is a taste of a bit more independence for all of us.  

Secondly, oldest daughter discovered that her schedule was NOT allowing for enough time to move between her fourth period, to the locker and back to the cafeteria AND testing her blood sugar soon enough to pre-bolus for lunch.  For the first time without mom's help, she decided to bravely speak up to her fourth hour teacher and suggest testing a bit sooner in class so that she had enough time to eat.  The teacher was more than happy to accommodate and also asked for any other suggestions that oldest daughter might have to help keep the hour running smoothly.  Between us parents, that's another hefty dose of independence for oldest daughter.  She is finding her voice and discovering that speaking up is worthwhile.  Little by little, this is how I know I will one day be able to send her off to the college of her dreams.

Finally, youngest daughter was moved into a new homeroom that allows her to utilize some of her awesome math skills.  I am beyond thrilled because this is a perfect fit for her.  She is also lucky enough to have a teacher that is the aunt of a student with t1d and knows the ins and outs of care.  It is great as I can see how relaxed this has made youngest daughter.  The significance of having someone that is fully trained was not lost on youngest daughter.  She has been beaming since stepping into the classroom.  For the first time in a long time, I listened to her on the diabetes baby monitor as she giggled in her sleep.  Pure joy.

Which leaves me with this; my heart is full because I know my girls are happy and my dear friends, this is the best kind of way to start a new middle school year.

Busy weeks to come and I apologize for not writing more often.  Trying to find my own balance now that school is in session.  It will come, just takes time and figuring out a new routine.