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.

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.

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!



 

Diabetes Camp - A 7 Year Review

One of our first and continues to be one of our very favorite med-staff at check-in. 

Our youngest daughter was diagnosed in 2006 at age 3.  Just two years later at age 5, with an already strong commitment to leading the best possible life despite T1d, I bravely packed her up for a day camp experience.  She was so tiny that while it seemed impossible to actually leave her on the campgrounds, her wide smile proved that we were doing EXACTLY what needed to happen.  Our youngest daughter felt no fear, worry or concern about having her very first camp adventure.  Even more importantly, she wasn't even thinking about type 1 diabetes, she was only focused on being a kid.

At that same moment, I was also dropping off our oldest daughter, who was seven at the time, to the same camp.  In a different section of the camp, day campers were allowed to attend without a T1d diagnosis during the same week.  It was wonderful for a different reason; both daughters were sharing the same experience, at the same time, without an emphasis on missing out because of NOT having T1d.  It was equally as critical to provide our oldest daughter with the feeling that she could also focus on just being a kid and not taking a non- T1d sibling backseat either.

Two awesome counselors at daycamp, year two.

The first week wasn't perfect,  I struggled with letting go and found myself parked too long after dropping off and arriving too early at pick-up at the end of the day.  It wasn't for a lack of trust with the fantastic camp counselors or the med staff, but a reflection of my struggles to let others care for the girls.  It had been 'us' for so long, with little outside help, that I found it hard to suddenly turn my caregiver side off for a week.  Just as I started to let go and feel the benefits of relaxing my grip, the week ended.  However, having that first year under my belt, certified my commitment and desire to try it again the next year.  As hard as it was for me as a mom, the girls thrived and created new friendships that have continued through their childhood.  The biggest take-a-way was the realization that others were sharing our journey and we didn't need to go at it alone.

Oldest daughter's first year at overnight camp.

The following year, a second diagnosis invaded our family.  In the odd way things happen, when camp time rolled back around, there was no discussion of IF our girls would go, but WHEN they would attend.  Our oldest daughter was old enough to make the choice of staying in day camp or head to overnight.  Without hesitation, she asked to stay overnight.  With only a few months of an official diagnosis of T1d, our oldest bravely ventured away from the comfort of sleeping in her own bed, for a week of sleepovers with her many new friends.  That left me with the task of continuing to drive back and forth for our youngest daughter at day camp.  Part of me felt relief with the thought that if oldest daughter needed my assistance, I would be able to help - at least at the start of every morning and every evening.  The other part of me felt an underlying unease at the thought that I might overshadow her first real camp experience.

Swimming in the big lake.

Having that uneasy premonition should have been a forewarning that it wasn't smart to interfere with the camp experience, but I promptly disregarded those ill feelings.  On the second night, I convinced myself that I had to use the bathroom located in the center of the camp.  I slowly walked through the grounds, made my way into the bathroom and again, walked slowly back to the car.  The road winded through the camp and near the infirmary.  At the exact moment that I walked by the medical building, the door swung open and a cheerful, bandaged little girl popped out saying, "Hi, Mom! Don't worry, I am alright now!".  My horrified expression gave way to a few tears and later a few laughs when the story was explained of a simple camp scrape.  That moment taught me that I was better off in many ways to live by the adage, 'What Happens At Camp, Stays At Camp!'

Sisterly camp love.

The next year was one again of a day camp experience for youngest and for oldest, another overnight. Things proceeded more peacefully as there was no way that I wanted to inadvertently step into an emotional beehive due to spying!

Camp Midicha group pic of 8 and 9 year-olds in 2011.

By year four, our two girls prepared for a joint overnight experience.  While they are two years apart, the reality was that age group of cabins would never allow them to bunk together.  They are truly best friends and both struggled with the idea that could spend a week together but also apart.  We explained that they would see each other frequently at the cafeteria, the lake and even the big bonfire at the end of the day.  At the end of the week for pick-up, their med staff volunteer rushed up to me with a big hug and said she was delighted to have the girls at camp.  She explained that they were so kind to each other that when one needed an infusion site and felt scared, she immediately asked for her sibling.  The sibling arrived, held her sister's hand and comforted her extensively.  At that moment, it occurred to me that it was the first time the girls had experienced total independence without mom.  I knew that I could start to let go even a bit more.  The girls had each other.

She has always been a top-bunk kind of girl.

Looking back at that story now, I am not even sure which daughter needed the comforting.  When I asked the girls, they both pointed at each other and swear that they were the ones who did the comforting.  That's the result of the independence that we have going into year seven.  Both feel empowered by their T1d.

Even though she was little, youngest daughter flourished at her first few camp experiences. 

Camp has become an extension of our family.  Without even noticing the subtle joyful effects of the friendships made by the many organizers, med staff, counselors, counselors-in-training (CITs), and fellow campers, there has been an undeniable footprint of independence, love and compassion on all of us. It has fostered long-term goals as both of my girls strive to become CITs and eventually, counselors when they graduate high school.  The reason?  They both explained that they want to show the little kids the same kindness that they were extended.

Oldest daughter with her most cool shades!

As my youngest daughter said, "The first day you dropped me off at camp was so scary.  Then, I remember seeing a kid with a pump that was black but looked like mine.  I knew I was in the right place.  Then, the counselor came over and let me wear her hat.  She was so nice and helped me not to be scared.  I really liked her and she had diabetes too.  It was like all of us just belonged together.  I liked that feeling."

Camp:  The Magic Medicine!

Thank you to ADA Camp Midicha for seven wonderful years.  Together, we are raising some wonderful kids that just happen to have T1d.  Thanks for being part of our family.

Diabetes Camp - Making Your Camper a Care Package

School is finished for the year.  

And let me just say that we barely made it across the finish line.  Year-end is tough with state testing, finals and projects.  With my newly minted 7th and 9th grader, I am already hearing guffaws from the many parents that walked ahead of me.  "You think that year was hard?  Wait until high school!"  My hats off to teachers around the world.  You are amazing.  Especially because you are willing to come back and do this year after year!!!!!

With one week in between school end and diabetes camp, I am now scrambling to put together two campers packing list.  Part of which includes the annual care package.

You may remember my post from two years ago HERE.  I thought I would update it with a bit more of a 'Teen' look.

First, start with a basic box.  You can use shoe boxes or recycle old UPS boxes.  I purchased two simple photo boxes from Michael's craft store.  Each cost just $3.99.  During a sale, the boxes are often as inexpensive as three for $5.00.  You can also find coupons for regularly priced items which discount around 40% off online.  

I try to choose colors that are more neutral now.  While my girls love pink, they both have recently changed out the look and feel of their bedrooms.  When camp is over, the boxes will stay in their rooms and be used to hold school papers, keepsakes and more.  Having a nice neutral color is a great way to blend decor.




At the same time that I purchased the boxes, I also picked up a few inexpensive packs of stickers to decorate each box with.  One rule of thumb for all items that go to camp is to make sure their is a label with the campers name.  Letter stickers work nicely for this.

As I mentioned above, the boxes will stay in their room.  For this reason, I purposely am not going to decorate the label area.  When they come home, the girls will make labels to identify the contents.  Most likely, the boxes will hold other items after that.




Next, the fun part...  gather up your goodies. This year, I chose items that appeal to older girls ages 10-15.  You can easily adapt this to suit your child (boys too!) with whatever items they find to be fun.

Some ideas include:

• Outdoor toys like balls, Frisbees, discs.
• Travel games, journals and comic books.
• Sunblock, lip balm and hats.
• Beach towels, string backpacks.
• Tattoos, fingernail stickers, stuffed animals.
• Or anything else that you choose!

Our camp does prohibit all food items - including gum, anything that looks like or is a weapon, nothing needing the use of matches, and no electronic devices.  This is not the time to give your child a cell phone to call home.  One of the best "perks" of camp is that your child is able to unplug and enjoy friendships in the wild outdoors.  Nothing is better than that.

While this is fine to send, I generally avoid items that contain scent that may attract mosquitoes.  Therefore, no perfume, body spray or lotions. Deodorant and soap for the shower is a MUST!  The rest of the cabin will thank you!!!

I try to select a few group oriented activities.  Should my child have a quiet moment back in the cabin, often, having a small toy to play with a buddy is a great way to ward off home-sickness.  The Cahootie catcher is a perfect example.  You can also send scrap paper and instructions with how to make these as a group activity too.  Directions are on Pinterest.

Window markers are also fun and easy to clean up when the week is over.  Everyone in the cabin can take turns personalizing their cabin space.  This is stain-free fun too.  No damage to the cabin or the kids.




Useful items work well too.  My youngest had her eyes on the beautiful rhinestone goggles for weeks.  Without her knowing, I was able to pick up a pair for herself and for her sister's surprise box.  I know this will get used well beyond camp time and while it was a bit of splurge, it is also going to be well loved.




Other silly and fun items for the group to enjoy include things like glow bracelets, glow necklaces, flower leis, bandannas, face paint or something like this hot pink temporary hair spray.  This can be used by all of the girls and will wash out in the lake at swimming time or in the showers before bed.  More fun for all.

I also include postcards which are pre-addressed and stamped for mailing to home.  To make it even more fun, I added a silly crayola pen.  In the picture below that, we had some leftover party favors that included mini note-pads, perfect for playing tic-tac-toe or writing notes between bunk beds and also, two more pens to share with cabin mates.







Nothing fancy here, but a deck of cards is the ultimate camp toy.  The kids will play all sorts of games such as go fish, spoons, war, etc..  Everyone can join in on the fun too.







At night, it is also nice to have a quiet toy.  This works for my youngest daughter especially.  She will smoosh and toss this little guy in her bed until she is ready for sleep.  It also works to have something to hold onto for site changes on her insulin pump.  Although at camp, she tends to be more brave and confident in her care.  It is camp magic!




I do also tuck in a love note from home and a few other goodies like nail polish and magazines.  A good book is also a favorite.

Here is the completed box.  Next, I will wrap this up in plain brown paper and address to my daughter's name and cabin.  A special tip is that if you are going to the camp, you can drop this off at the office and avoid any postal fees.  Just be sure to add the day that you want it delivered.  I tend to ask for Tuesday as it seems like a great time in the middle of the camp experience (Sunday is drop off day for us) and I want the girls to be able to have time to use the items that I packed.




Here is the finished product.  Just six more days until camp.  Now, to get busy on packing!




Happy diabetes camp week!