Tuesday, June 30, 2015

2015 iCan Summit - Kids Advocating for Kids in Healthcare

Oldest daughter shortly before applying for iCan.  She will graduate in 2019 and hopes to become a medical doctor. 

If you read my last post, Diabuddies is still going strong.  We are now on day two and the prescription of respite seems to be working.  Sometimes in the midst of the maturity that both girls have, I forget that they are still young and that T1d is very much a full-time job.  As it stands right now (and at this exact typing moment), oldest daughter has even asked for a few minutes of Diabuddy support today.  Sad, but true.  I think BOTH girls needed a bit of a break.  #teent1d  #curet1d

Getting ready to tackle Capital Hill.

What I started to post before the Diabuddies moment was a look back at our week in Washington, D.C. and our oldest daughter's work with iCan.

If you are not familiar with iCan, it is a newly created global organization designed to help provide a voice BY kids FOR kids in health and medicine.  The reality is that so much of what happens with healthcare is done with very little (and mostly none at all) thought to what kids want, think or desire to help ease their visits.

From the iCan.org website:
iCAN is a worldwide consortium of children's advisory groups (e.g., KIDS Teams, Young Person's Advisory Groups, and similar organizations) working together to provide a voice for children and families in medicine, research, and innovation through through synergy, communication and collaboration.

Delivering her opening remarks to all of the attendees at iCan.

In a nutshell, iCan was put together by Dr. Charles Thompson.  Dr. Thompson had created a group called KIDS Connecticut around a year and half ago.

From the KIDS overview on the iCan.org website:
The Kids and Families Impacting Disease through Science, or KIDS initiative is an advisory group of children, adolescents and families focused on understanding, communicating and improving the process of medical innovation for children. KIDS is sponsored by the American Academy of Pediatrics (AAP) Section on Advances in Therapeutics and Technology (SATT) in collaboration with the CTAAP Chapter and children's hospitals.

As Dr. Thompson quickly discovered, there were smaller children and teen advisory groups sporadically around the world, doing similar things.  He reached out to a few of the groups and formed a small network.  In the winter of last year, he reached out to a few more and came up with the idea to hold the first ever #icansummit2015 in Washington, D.C..  In this way, all of the groups could meet, share best practices and take important learning home to continue advocating throughout the year.

Oldest daughter became involved with iCan through her own University of Michigan Mott Children's Hospital.  Last year she applied to join the Teen Advisory Committee (TAC) at Mott.  TAC was created a few years ago to help the hospital garner a voice from teens about what they liked during clinic or hospital stays.  The teens have worked on projects such as picking out new board games, creating a teen night and designing a website.  It is part social and part community service.  Overall, the teens have loved being involved.  

The opening remarks audience.

Oldest daughter fell in love with the concept of having a voice to help guide doctors and researchers to better care and jumped in with two feet.  Shortly after joining the local TAC, she was elected to the role of TAC co-Chair with her friend, Elizabeth and then, both were chosen to represent their teen group at iCan.

Along with a speech, the TAC delivered a 3-minute video.

I've spent quite a bit of time over the past two years actively advocating for patient/family-centered care, so it has been wonderful to see our oldest actively engaging in the same way.  One aspect that I love is that not only has she found a way to speak up (typically she is a rather quiet child), I also love that this has been filled with enrichment opportunities.  She can actually participate in what she has only read about in textbooks.  Talk about bringing history to life.

After the visit to Children's National Medical Center.

During this trip to Washington, D.C., oldest daughter was able to learn how a bill becomes a law (which made me want to sing an old 70's tune) and apply that process to the many, many hurdles that occur in pediatric medicine (like smaller population, less pharma incentives, less profits and the risk of harming children in the process).  She quietly voiced her frustrations and explained that she has watched her sister and herself see almost no change in the 9 years that Type 1 Diabetes has invaded our home.  She then said, "Insulin is not a cure.  This is just my life support.  I still want a cure."

Playing the FDA game - new medicines do not happen quickly or cheaply.  

Oldest daughter listed to issues presented by the American Academy of Pediatrics, Food and Drug Association and even the Canadian Health Care.  She also heard from Unicef and was able to provide feedback on a document to see if it was legible to teens, families, doctors and researchers.

Tasked with recording the outcomes and speaking out as to why it is important to have research.

On the last day, oldest daughter was asked to seek out elected government officials and explain why pediatric healthcare legislature was so critical.  Together with her friend, Elizabeth and several international attendees, they walked through the Hart Building to find our two Michigan Senators.  The first was Senator Gary Peters, whom graciously held an impromptu meeting in the lobby and patiently listened to both teens and their TAC leader as they explained the importance of funding pediatric research. Senator Peters acknowledged their plea and invited them back to his office to meet with an aide and to exchange contact information.  It was beyond exciting for the teens to see how they had a voice and could exchange information that might possibly lead to change.
Emotional moment on the realization that she has not seen a cure or enhanced drug during her lifetime for T1D.

That same process was repeated at Senator Debbie Stabenow's office and later, at the offices of Debbie Dingle and Mike Bishop, two state of Michigan Representatives.

Outside the Supreme Court, where less than 24 hours later, same sex marriage would be approved into law. 

For oldest daughter, this underscored the importance of voting, something that I have been personally teaching to both of my daughters since they were old enough to walk.  It also helped for her to see the importance of responsible medical care.  For years she has said that she wanted to be a doctor.  If you asked her at any point prior to iCan, she would add on "Endocrinologist".  After iCan, she tentatively explored the idea of becoming a medical researcher.

Senator Gary Peters listening to our iCan members explain the importance of his vote on pediatric medicine.

As we settled onto to our plane bound for home, oldest daughter, turned to me and said, "I can't believe that I didn't understand how slow the process is for creating medicine that can help kids.  I remember when I was little and thought a cure was something that we could just buy.  I wondered why we didn't do that.  This week I learned that I might need to do research to make it happen.  It's not happening fast enough, mom."

#goals

All I could do was agree.









Sunday, June 28, 2015

Diabuddies

We are coming off a crazy busy two weeks.

And my intent was to share more about the second of those weeks; the #iCansummit2015.

However, that can wait for another day.

Because sometimes in the world of T1D, things have to go in a different order than we had originally planned.

Tonight, after a second 'forgot to bolus' moment, our youngest daughter collapsed in a puddle of tears and told me that it was just too hard.  I tried to reach in for a hug, but it wasn't what she needed.  Rolling over on her side, she tearfully explained that she was tired of T1d and needed a break.  She had spent the last week at a day camp with no trained adults and had worked very hard to count carbs, dose her blood sugar and stay in range.  It had been a big step and while all of us felt like it was very successful, it had also been a bit stressful, especially for youngest daughter.  Patiently, I rubbed her back and waited for the tears to calm.  Then, I asked her what we should do.

"I don't know.  I don't want to be a baby.  I should be able to do this,"she explained.  "I just wish that I had help sometimes.  Like tonight, I just wanted to eat and then you guys were done and I thought I would just dose after.  After came and I totally forgot.  I am so dumb."  More crocodile tears rolled down her cheeks.  As a side note, nothing is harder to see than when your child has reached their limits with a chronic illness.  It is absolutely heart-breaking.

Shaking my head and trying to squeeze in a mommy-comfort hug, I answered, "I understand exactly what you are saying.  Everyone in the world gets tired of doing things that they do all of the time.  Have you ever heard of a relief pitcher?"

"What's that?"  She wiped away a few more tears.

Handing her a tissue, I continued on - even though I know very little about sports in general, I felt like I had caught her attention and didn't want to let go of the moment.

"Well, a relief pitcher is someone that the coach calls on when he sees his main pitcher looking kind of tired.  The relief pitcher's entire job is just to help out and give his team-mate a break," I explained with a little smile.  "I could be your relief pitcher."

Youngest daughter shook her head no and started to explain how that made her feel like she wasn't a big kid or that she wasn't able to do what she supposed to be able to do.  I pushed aside her worries and suggested that we try it out for an entire day.  After that, she could decide if she wanted to keep me in the game or bench me - her choice.

We made up the name 'Diabuddy' based on a term that she heard used at camp.  For the rest of the night and all day tomorrow, I promised to be her Diabuddy and to just handle all things T1D without asking.

So far, she seems a little excited.  A few hours after the above conversation, we headed out to our patio for a bonfire, music and marshmallows.  Before she could say anything, I casually picked up her Animas Ping meter/remote and checked her bg and bolused her for one S'more and an extra marshmallow - a standard amount at our house.

Her older sister helped too by saying she wished that she had a Diabuddy and by giggling at her dad's antics, where he played the part that he was a terrible Diabuddy.

Still, I know that despite the smiles, our youngest is feeling the heavy weight of burden that chronic care brings.  I know she needs respite from the care that it takes to stay healthy.  It makes my article on burden clearly come to life.  

I'll be there until she is ready to help step back in.


Friday, June 19, 2015

Preparing for a Non-Diabetes Camp

Our Naturally Sweet Sisters Day Camp Preparedness Bags


Not even a night back from ADA Camp Midicha and our girls have packed once more for a second set of summer adventures.   Our oldest daughter and I will be heading off to Washington, D.C. - more on that to come - and our youngest daughter is spending an exciting week at an engineering camp designed for middle school through high school aged kids.  It's a great way for her to sharpen some of her newly discovered STEM skills and also, a wonderful way to have an experience that is completely her own.

This camp also poses a few T1D challenges.  First, it is strictly a day camp which is run by a local community college - not a dedicated medical staff.  Secondly, it will be about 1.5 hours from the Naturally Sweet Dad while he is at work.  Third, for the third time in less than six months, I will be out of the state and unable to help with carpool arrangements, T1d needs and all other parenting tasks.

With so many issues stacked against us, it would seem prudent to throw in the towel before even considering registering.  However, that's not how we like to respond to T1d.  Engineering camp was important to our youngest daughter.  She was asked to attend with her like-interested girlfriend from school and viewed it as a highlight of summer.  Saying no due to a few T1d challenges would have set the stage for creating the mindset that T1d negatively trumps all good things.  As a family, we firmly believe in kids first, diabetes second.  To underscore that line of thinking, we determined that keeping youngest daughter on her path of engineering discovery far outweighed the issues.  We knew that we could work around our barriers.  

Here is our plan to succeed - and mind you, she hasn't gone.  I am writing this on the eve of leaving and wanted to make sure I put the thoughts down.  If it doesn't or if we have hiccups, I will calmly be referring to #3.

1.)  Establish a Team:  Our first goal was to determine how we would get our daughter to and from the camp each day.  We knew the other family and the Naturally Sweet Dad agreed to arrange a carpool schedule and trim a few of his hours on the job.  The other mom understood our one parent predicament and volunteered to help out as much as she could.  I also happen to have an aunt that lives nearby and she also volunteered to step in as an emergency contact should the need arise.

2.)  Make a Plan:  The next goal was to ensure that our youngest was ready to take on the responsibility of her own T1d care for the week.  During the school year, she did a fantastic job of managing her blood sugars.  I also knew that I could help prepare her by creating a series of daily snack/low blood sugar bags to bring along.

Prepare Snack/Low Bags for Day Camp by using gallon size storage bags - label with day of the week.

Assemble the items that your child needs.  We chose juice boxes, glucose tabs, fruit snacks and beef jerky.

For morning and afternoon snacks, our daughter requested these items.  
We also added Smarties to help in case of a low blood sugar.  After so many years, Smarties are just medicine to the girls. 


3.)  Be Flexible:  Knowing that there will undoubtedly be a few things that go awry along the way, I prepared youngest daughter with secondary plans.  She will bring extra money to purchase items from the vending machine if needed and will also have her own personal bag of snacks to enjoy in case the lunch menu changes.  She can text her dad, myself or even our aunt at anytime during the day.  Not for one second will she be alone - she has a team!

We requested a copy of the weekly menu and discovered it was provided daily by local restaurants.  To help our youngest, we added carb counts - AND reminded her that things might change at the last minute.  We also added a bit of extra money and a few more snacks for the days where she wasn't sure if she liked the item.

4.)  Have Fun!:  By preparing for T1d, we hopefully are eliminating the possible overshadowing of T1d.  Above all, this is a camp that our youngest daughter wanted to attend.  We want her to have the best possible outcome - which certainly is a desire to continue to love learning!