Because Growing up is Hard Enough

This year, our second daughter decided to move into an apartment in her college town and take some summer courses.  In the short 2 months she has been away, she has definitely applied the life skill of problem solving.  The last few times she has called me, she is the epitome of Murphy's Law.  I have renamed it Taya's Law in my mind.  She learned how to change a light bulb of  light on a 10 foot ceiling without a ladder.  (Let's hope she doesn't do that again!)  She learned how to find financial aid when FAFSA fails and that you have to work hard and long to make money.  She learned how and where to get her oil changed so they don't try to convince her that her car will fall apart tomorrow if she doesn't fix this or that.   She learned that fun stuff costs money and so does locking yourself out of your apartment.  She learned you can't win a wrestling match with road dividers and she is on a first name basis with her building manager after discovering a wasp's nest in one of the bedrooms. (Very gross!)  One recent text simply stated, "I hate doing adult things."

All of the above incidents could have happened to anyone, well, maybe not anyone in 8 short weeks

Taking a break from anatomy
to do blood sugar check/
insulin bolus

but these incidents aren't exclusive to Type 1 Diabetes.  To top all of this off, she is learning to manage her own healthcare.  She has started seeing an endocrinologist, a new dietician and a new diabetes educator.  She is learning to navigate these relationships so that she can find balance between the life she wants to live as a normal college student and the life she needs to live as a young person with a chronic illness.  I am so proud of how she is learning to advocate for herself to find that balance.  To that end, she made the decision to take a vacation from her insulin pump. This, I am told, is a pretty typical occurrence.  She is just sick of being "plugged in" and wants to try something different.  Tylie made the same choice at age 18.  The difference was, Tylie was at home working with our own familiar pharmacy and healthcare providers.  Taya's first frustration came when her endocrinologist's PA, a young person herself,  was very supportive and encouraging.  The diabetes educator, an older woman, was not.  Taya stuck to her guns and chose to stick to the plan she worked out with her PA, which includes a shot of an ultra long acting insulin daily as well as 3-7 shots of short acting insulin as needed to cover food or treat highs.  Let that sink in...up to possibly 10 shots in a day not including finger sticks!  On the pump, she would still do finger sticks but only change her set (the part that delivers the insulin to her body) every 3 days.  Essentially she is exchanging roughly 2-3 "shots" a week for potentially 70 or more!

Next up, finding a pharmacy.  Since she was unfamiliar with Grand Forks pharmacies, her physician sent the scripts to a well known chain.  I gave her the information she would need for insurance and all should have gone just fine.  At 6 pm, the phone rings, followed by the question, "How come everytime I try to do adult things something goes wrong?"  They would not fill her prescriptions because they said her insurance was denying it.  After a frantic call to me, who called our insurance company, it seems the pharmacy was not entering her information correctly.  After another couple hours of run around- I sent out an SOS to people living in Grand Forks who finally hooked us up with a pharmacy near her that worked with her on a much more personal level.  At 19, picking up cold medication used to stress me out.  I can't imagine how frustrated she was waiting to get the medicine that is required to save her life while all her friends were off having a relaxing summer afternoon!

Blood sugar check before the Bison game. 

Tylie, too has had numerous challenges in her quest to fit diabetes things in with 21 year old things. Her path to diabetes independence was a bit less bumpy as she had the luxury of a more gradual transition.  An unexpected blessing for the girls is that for the first time since Taya was diagnosed, they do not have medical personnel comparing them to each other as they now see different teams.  But, we can't forget TJ as he transitions to middle school and hormones and balancing friends, sports, and his desire for independence.    In a world that is fast moving and ever changing, there is one certainty for these kids of mine--diabetes isn't something they can grow out of, ignore, or pop a pill to cure.  They need insulin and sometimes juice boxes for life support.

My desk at work showing a week
of blood sugar chaos for the middle
school boy.  

I encourage you to help us keep advocating for a cure by reaching out to your government officials and ask them to sign a letter of support for the Special Diabetes Program.  This program provides $150 million annually for the National Institute of Health to continue vital research on Type 1 Diabetes.  Finally, if you feel so moved, help us reach our family goal for the JDRF One Walk next weekend and donate to our team- T1-cubed and of course, we'd love for you to walk with us.

Changes

Four years ago today, Troy and I were driving to Minneapolis for a weekend getaway to take in some Twins baseball.  On this particular drive, somewhere between Fergus Falls and Alexandria, I got a text from a friend I had lost touch with in recent years.  Her words instantly took my breath away and brought tears to my eyes.  "Addison was just dx'd with diabetes."  You see, we had become rather insulated in our little world.  We managed day to day.  We felt we were living successfully with diabetes.  We had ups and downs both in blood sugars and emotions but we were surviving.  We had become complacent and overly accepting of this disease in our lives.  Her text made me realize we shouldn't have to settle for this and no one else should have to live with it.

Now, four years later, we are in a different place.  We have become more active as a family in seeking a cure and promoting awareness.  I am no longer complacent or willing to accept that they will live with this disease their entire lives.  However, this has been a tough summer for me.  There are a lot of changes going on in our family.  First of all, two girls will be going off to college in two different places.  Taya will be venturing off to Duluth to tackle a biology major and Tylie is moving to Fargo to study History and English.  Just reading that you can see the differences in their personalities, yet it is hard for me to imagine one without the other. Tylie may be the oldest chronologically, but Taya has always been the one pushing her out of her comfort zone.   If Taya hadn't decided learning to ride a bike was a good thing, I am fairly certain Tylie would still be using training wheels.  Taya does things by the rules with order and logic and Tylie likes to dream and discover mysteries as they come along in her own time. They give each other balance.  What I have been learning in recent weeks is that they also give me balance.

Sending kids off to college is, in itself, an emotional event.  Now imagine those kids having diabetes. In addition to making sure they have bed sheets and coffee pots, my list includes finding a pharmacy and making sure glucagon is up to date.  In truth, I am terrified.  I have always been their back-up pancreas.  Even as they have learned to take care of themselves and I am more hands off, I fill the prescriptions, I follow their care, I see them daily.  I am up in the middle of the night when I hear the fridge open.  I am there when they are throwing up or have screaming headaches due to blood sugars that won't settle where they belong.  As they begin to make the natural separation from us and learn to live independently, I find myself anxious and unsure of what my new role is in both their real life and their diabetes life.  Endless questions run through my head and when I say them aloud, I can see their annoyance.  Does your roommate know what you are like when your blood sugar is off?  Does she know what to do if you can't do it yourself?  What if you get low in the middle of night?  What if you get sick?  Will you remember to check for keytones even if you don't think you have them?  I have managed to keep some thoughts in my head.  Instead of asking if there is a plan for where to keep pump supplies or syringes, I say out loud, "Do you need a microwave?" while quietly stashing AAA batteries and fruit snacks into the Target cart.  Much like four years ago, when I got that text from my friend, I realize yet again, we have become insulated.  I forgot to consider that there will be a time that they need to care for this disease more on their own, without me as immediate back-up.   They have to learn to manage it and own it in a way that works for them. I know we have raised them well.  I know they are independent and strong and resourceful and I am so proud of the women they have become. Frankly, I'm even a bit jealous of this new adventure they are about to undertake.  But, I know that diabetes does not play fair and that...well, that makes me angry.

Four years from now, we will again be in a different place.  The girls will either be finished up with college or working toward post graduate degrees.  TJ will be starting high school.  I want things to be different then.  I want them to move into homes without considering where to put all the medical supplies.  I want them to have families without fear of their health.  I want Addison and TJ to go college without being encumbered by a machine that doses medicine so food nutrients can actually fuel them.  Of course, above all, I want them to be happy.  Imagine how that would look in a world without Type 1 diabetes.

If you feel inclined to help make this a reality, please visit this link.  It will allow you to donate or join our One Walk team.  We are stronger together!  http://www2.jdrf.org/goto/T1cubed

Time to Kill the Beast

Last week, I was privileged to participate in JDRF Government Day.  This is an event sponsored by JDRF in which advocates from across the country meet in Washington D.C. Over the course of four days we learned about research progress, networked with other T1 D advocates, and met with our respective state's elected officials.

On the first night, we stood and introduced ourselves and spoke of our connection to T1D.  I fought back tears more than once as roughly 200 people told their stories.  We heard of success stories and we heard of losses.  Despite the resilience shown by all present, the message is clear, this story of T1D needs a happy ending and the sooner, the better.

We heard that The Special Diabetes Program (SDP) is making progress.  So much so that Dr. Aaron Kowalski- JDRF's Chief Mission Officer and VP of Research stated, "We have this disease on the run."  As a person living with diabetes himself, he has a reason to give chase.  Since the inception of the SDP in 1997, we have seen the improved technology including better CGM's and the Artificial Pancreas.   However, what about the person who doesn't want to be attached to a device 24/7?  To that end, we saw an Encapsulation device as small as a band-aid that could potentially be implanted under the skin and allow a person to live insulin free for up to two years.  We heard of research projects such as The Environmental Determinants of Diabetes in the Young (TEDDY) that has made incredible strides in determining the causes and progression of T1.  SDP researchers have identified over 40 genes associated with T1D bringing the total to 50 known gene regions- up from only 3 just a few years ago.

While Type 1 and Type 2 are two different animals, SDP research has benefited both in terms of preventing complications.  Continuous Glucose Monitors (CGM) and the artificial pancreas systems can improve glucose control in both populations, thus lowering long term complications such as eye and kidney disease.  SDP is accelerating a treatment which can reverse vision loss in patients with diabetic macular edema.

The SDP not only benefits people with T1D but also those with other autoimmune diseases Collectively, autoimmune diseases affect approximately 5-8% of the population.  Some of the genes associated with T1 are also associated with other autoimmune diseases.  Research and therapies effective for T1 could have a positive effect on other autoimmune diseases.  This little bit of information about autoimmune diseases is particularly personal to me as my immediate family seems to collect them like other people collect stamps!

We spoke with our members of the House and the Senate to bring our stories home, to demonstrate the progress and the need for SDP to continue and to ask them to please vote to extend the SDP, which is set to expire in September 2015.  It is currently attached to the "doc fix" and will potentially be renewed for 2 years.  Our voices were heard as the House overwhelming voted in favor of HR 2. The Senate will continue to discuss their corresponding bill after the Easter break and hopefully bring the bipartisan bill to a quick Yay vote.

While all of this progress is hopeful, the ending to this story cannot come quickly enough.   Yesterday, my husband sent me a text telling me that his blood sugar was 395!  I responded with an inappropriate statement,  thinking to myself he was one day early for an April Fool's joke and a terrible one at that! But, no-- it was no joke.  Troy had a kidney transplant nearly 10 years ago as the result of a different autoimmune disorder (IgA Nephropathy).  Things have been going great-- until this complication.  We had been told that prolonged use of Prednisone and Prograf could lead to diabetes.  For the last few weeks he has been really tired, had blurred vision, and just generally not feeling well.  His regular blood work came back with good news for the kidney but bad news for the pancreas.  After seeing his elevated fasting blood sugar, an A1c was ordered.  The result was a whopping 10.2-- officially the highest in the house- and not the news we wanted to hear!  However, knowing what we know about hypoglycemia, we should have seen this coming.  Today he became the 4th insulin user in our house and our diabetes arsenal has taken over another shelf.   Text messages about missing socks have become text messages about blood sugars and sliding scales.  After day one we both,  especially Troy,  have a renewed respect for what our kids have been handling for years.   If all goes well, his diabetes adventure will be short lived; for our kids, it's a ferris wheel ride they may never get off.

Despite the progress being made and the hope on the horizon, regardless of its type, diabetes is an ugly disease.  It's mean, it's painful, it's aggressive, it's unpredictable, it's deadly and it's time to kill the beast.

 Follow the link to learn more about the SDP and what you can do to help http://advocacy.jdrf.org/our-work/special-diabetes-program/   JDRF is currently sponsoring more than $568 million in scientific research in 17 countries including 50 clinical trials.  This link will tell you other ways you can be involved http://jdrf.org/get-involved/.  For my running friends, JDRF is a charity for this year's Fargo Marathon.  If you plan to run in any of the races, consider joining their team.

Look at the Ducks!

I follow a page on Facebook called "Type 1 (Juvenile) Diabetes Facts and Information".  She posts really good information as well as some really funny stuff.  She told me she finds the pictures searching on Pinterest when I asked about using this one here.  The image of this made me chuckle out loud.  Just this morning while walking to my car, I counted 4 test strips in the driveway.  Seriously, the driveway!  How does this happen?  They were not there yesterday!  They are so commonly seen laying about that even my husband notices them.  He came home from the baseball field on Saturday and stated he had encountered a first.  There was a used test strip at the baseball diamond and it wasn't ours!  At least we are not alone in struggling to get these little suckers to the garbage can!

But, funny image aside, I found the ducks symbolic in another way.  Way back in 2000, when I first heard the news of Tylie's diagnosis, my mind had immediately gone to the "horrible change" that had just happened to our lives.  It was like those ducks in the picture were dive bombing me with "what if's" and "OMG's" and none of them were good revelations.  I am going to spare you and myself the details of all those imagines because I don't like to visit that place in my mind.  Suffice it to say, those images are also why  I won't watch the movie Steel Magnolia's.  Instead, I want to look at the ducks a different way. 

When putting together our scrapbook for JDRF CC13 this summer, there was a lot of opportunity for reflection.  On Tylie's page, she wrote that she "tries to be a good example for her younger siblings."  And, she is in so many ways.  She recently participated in a competition for DECA (a business, marketing club) and qualified for Nationals for the second time.  Just this week, she won an event in a state journalism competition.  She student manages for hockey, babysits for other families, works polls in elections, and plays soccer.  She will go to college next fall and dreams of studying abroad.   Diabetes does not slow her down and she never fails to find the humor in it.  I can't help but to think all of these experiences will make her an amazing advocate in July.  Taya on the other hand, HATES diabetes.  There is rarely a day that goes by that she does not curse it.  For her, finding the positive is a battle she fights everyday.  At the same time, it doesn't stop her from living her life.  She plays hockey and will be inducted into the National Honor Society this week.  She studies hard in her effort to become a pediatrician.   She recently got a job in a nursing home as a step toward her career in health care.  While her approach to advocacy may not be as vocal as her sister's,  I have no doubt she will have an impact on people's lives.  TJ is an example of  a kid that that truly "lives out loud."  He never stops moving (or talking).  He plays hockey, baseball, football and soccer.  This weekend he was on his bike or jumping on the trampoline every chance he could.  His dream is to play hockey in the NHL.     (Ironically, the Ducks are one of his favorite teams.)  He does all this, pump attached, without skipping a beat.  His older siblings have taught him well and he is not afraid to tell others about what that thing is attached to his hip or why he has to poke himself before he eats.  His confidence makes everyone around him confident.  That was evident when I dropped him off at a birthday party this weekend and in the middle of me giving the parents my standard speech, the little birthday girl says, "It's okay, I know all about his blood sugar.  I'll watch him."   

One of my favorite quotes by an unknown author states, When the world says, "Give up," Hope whispers, "Try it one more time."  I choose to look at those ducks- that endless trail of test strips- as hope.  In our house we use an average of a little over 100 test strips in a week.  That is over 100 finger pokes and each one of them to me symbolizes hope and promise.  Hope that someday finger pokes will not be necessary and promise that until that day comes, we have options and opportunities.  I will do my best to be sure my children see their life for the gift that it is.  As a family, we will go to Washington and speak out about Diabetes.  We will be there physically, but we will bringing in our hearts all of their "brothers and sisters" who have fought this fight before them and who are fighting it today and for those yet to know the challenge.  Let's face it, some days are just hard and the easy thing to do would be to give up.  But, something within these resilient kids makes them get up and keep trying.  For them, I will gladly pick up a million test strips- bring on the ducks!

Excerpt from scrapbook for JDRF CC 

Really Aware

November is Diabetes Awareness Month.  I started out the month with the best of intentions.  I wanted to use Facebook as a way to educate people about what it was like to live with Type 1 Diabetes everyday.  That there is no vacation, that it's hard work, that it's exhausting, that it's frustrating, lonely, sad, painful...  But, somewhere in the month, I got too busy with "living" I didn't get time for the posts.  When I stop to think about it,  I still think it is important for people to realize the day to day challenge of living with such an disease.  However, in living our lives, I became more aware of not just the hardships of this crazy disease but the unexpected and random blessings.

We have met some amazing people that we never would have had the chance to know if it weren't for diabetes.  Last night, I got a call from a mom whose 9 year old daughter was diagnosed with T1 and Celiac this summer.  I have never met her before and, in fact, this was the first time we had talked. Within minutes we were laughing like old friends.  Why? We have something in common that no one can really understand unless you live with it too.  Who else would get the humor in your kid yelling, "Hey mom!  I'm high!" and having the strangers around you look at you like they are considering calling social services?  And then we sighed in understanding when we discussed the expense of gluten free bread and the challenges of trying to make it yourself.   Then there is the group of families that I have met a few times at various events for diabetes but have not ever connected with on a regular basis.  I might never actually meet some of them in person but when I read a post and hear about their challenges and their joys I feel like I am right there with them crying or celebrating.  I know that if I need something- help with a kid, a partner in misery, a voice of reason- they would be there.    That gift of connections goes for my children, too.  Through Camp Sioux they have made lifelong friends, built their self-confidence and know that they don't struggle alone. Their health care providers never fail to hug and encourage them.  The nurse at school is simply the best.  Even the managers of restaurants who care enough to come out and meet the kid they are making the special meal for and to make sure his food gets to his table safely.  We have also re-established connections.  It makes me sad to think that I might have lost touch with a good friend forever if it hadn't been for her daughter's T1 diagnosis.  While I would never wish T1 on anyone, I am thankful to have her back in our lives.

Two nights ago, in the middle of a set change, I caught the whiff of the insulin as it dripped from the plunger.  My first thought was, "I hate that smell."  My second thought was, "What if this wasn't an option?" So, yes, I hate the set changes, the pharmacy visits, the constant doctor appointments, phone calls, pump uploads, blood draws and all the rest that comes with the medication but I certainly can't hate the thing that gives my kids the options that they have!  This clear little liquid gives them a chance to play hockey and baseball, run, dance, be active in school, participate in DECA,  have a social life and just "be".  That little box they wear is not a beeper or a cell phone but is much more valuable- it's their pancreas.  As TJ pointed out once, "Diabetes isn't great, but I do get to wear this awesome machine!"   These two things put together are not their cure- oh, how I wish they were- but they give them the choice that not everyone has and for that I am thankful.

Over a year ago, the mom of a player Troy had coached called me out of the blue. (Again with the past connections.) Her 3 year old granddaughter had been diagnosed with T1 and she wanted to be actively able to help when she went out to California to visit.   She came over and met the girls and TJ and they talked to her about how they live with diabetes.  They were honest with her about it being hard and that sometimes they hated it.  But, when she asked if it limited what they did and their choices, their answer was, "mostly no."  The girls gave her some of their children's books about diabetes,(TJ didn't want them- they had girl main characters,eww!) a little stuffed bear, and a backpack they had gotten from Camp Sioux that was pink for her to take to California and share with her granddaughter.  She called me a few more times with questions throughout the year.  This spring her granddaughter was also diagnosed with Celiac so we talked about that and how we meal plan and the difference in carb counting and gluten free food that is kid friendly.  I have never felt that I went out of my way or that she inconvenienced me by asking for help.   So, I was quite surprised a few weeks ago when she showed up at my house with a story.  She said she felt grateful that she and her husband are able to help her son pay for their granddaughter's medical care.  She told me about how when she was young she was very poor and it always had an impact on her and that she felt now that when she could give back it was important to do that.  She thanked me and we chatted a bit longer.  As she left, she handed me an envelope.  I assumed it was a gift card to Starbucks,  imagine my surprise when I opened it and found cash!  And, not just a few bucks!  I was shocked!  Nothing I had done warranted that kind of reward.  I felt that I should give it back but when I told Troy the story he felt that she would be insulted, she wanted to give the gift.  The incredible thing was the timing.  That very week we had had to make some unexpected repairs to a car we had not planned for in our budget.  Her gift got us by in a tight time and hopefully taught my kids a lesson in giving back.

As Diabetes Awareness Month comes to an end and the holiday season rolls on, I am going to make a more conscious effort to be more aware of the positive things.  I would like to ask the kids more questions about their day that doesn't involve diabetes management.  I am going to try to not just focus on those missed finger pokes or boluses but instead cheer on the two extra she managed the previous day.  I am not going to focus on the sleepless nights or the roller coaster blood sugar readings but be happy that today no sites fell out at inopportune times.   I will smile and nod at the annoying parent at hockey practice who can't quit talking about how busy she is while in my head silently praying a low blood sugar doesn't ruin my kid's time on the ice.  Sadly, Diabetes isn't going to go away tomorrow.  I will continue to do what I can to try and give people a realistic picture of a family living with chronic illness.  We laugh, we cry, we yell, we scream- and that was just today! It's easy to be aware of the hard stuff- it's always there, right in front of us or in the kids' case, attached at the hip, literally.  But, along this unpredictable road, our lives have been touched by some amazing people who remind me to also tune in and be thankful for the hidden blessings.

Why TI Diabetes Day?

This past weekend TJ, Tylie and I had the opportunity to attend a workshop for families and children with diabetes.  Taya and Troy were unable to attend due to a volleyball tournament.  Tylie had been asked to paint faces of the littler children there and to help with the children's part of the workshop.  At the end, she and I were part of a panel of families talking about about the insulin pump. 

Prior to this portion of the program, a local doctor presented on the current research in diabetes with the emphasis on T1.  Before I share what I learned, I need to journey back to when Tylie was diagnosed so you can get the full significance of how far research has come and how important these projects continue to get funding.  It will be 12 years in January that we first heard the words "Your daughter's pancreas no longer produces insulin.  She has Juvenile Diabetes."  We are thinking with a key word like "juvenile" she will outgrow this ridiculous condition.  And, naive as we were, we asked when this would happen.  We were told this condition was also called "Type 1 Diabetes" which means that her pancreas will never again produce insulin.  Something- probably a virus- mistakenly attacked the cells in her pancreas where insulin is produced and destroyed them.  This is different than "Type 2 Diabetes" which means your body doesn't produce enough insulin.  This type of diabetes does not always require insulin and is largely treatable and preventable with diet and exercise.  In order for her to get the energy she needed from the food she ate, we would need to give her insulin injections- everyday, more than once. We would have to check her blood sugar, everyday sometimes more than 8 times.  That's a lot of poking! And, that doesn't even include the blood draws needed every 2-3 months.

Now, 12 years later,  I can clearly remember sitting in her hospital room learning about the peaks and valleys of the two types of insulin she would need.  In the morning, we would need to make a "cocktail" (not the happy kind) of NPH (cloudy) and Humolog (clear).  She started out on the tinest dosage- under 2 units total.  I kept thinking this microscopic dot of stuff sure caused a lot of trouble!  She would take a shot in the morning and a shot of Humolog at supper and NPH at bedtime to carry her through the night.  Then, we had to feed her based on those peeks and valleys- "feeding the insulin" we often referred to it.  While giving us our lesson, our doctor told us- "There is so much research going on that in ten years you will be shocked by how far you have come."  Holding my baby girl that day and a year and a half later her little sister, I desperately hoped this was true!

We continued with mixing shots for a couple of years and then a "miracle" insulin became available to us called Lantus.  Lantus lasted 24 hours without peaks and could serve as a "background" insulin.  The goal was to get rid of the dramatic highs and lows and then be able to give faster acting insulin at meal time to cover the food.  We no longer had to be quite so tied to the clock and when these insulins became available in pen format our lives became that much easier.  However, shots were still required and in Taya's case, sometimes up to 8 times a day.  And, they were not fun.  We kept hearing about this thing called the insulin pump.  This miraculous machine that could hold insulin, calculate your dosage, and only need to be changed every three days.  (Okay, I am simplifying here, but you get the picture.)  However, there was also this thing called insurance that liked to put up road blocks.  But, many letters and pages of documentation later- the girls got their own insulin pumps!  They were started on Taya's 10th birthday- 8 years after Tylie was first diagnosed.  What a blessing these little contraptions are for these kids!  Our Diabetes Educator still remembers how excited Taya was when we came back for our first set change.  She told her, "That was 17 shots I didn't have to take!"    However, it was not a cure and 10 years later we heard the dreaded diagnosis a third time.  He is now also on an insulin pump.

So- yes, things have definitely changed!  And for the better- but it isn't perfect.  It isn't a cure and it isn't a pancreas and it didn't stop it from happening to our baby boy.    There are lots of bumps along the way and lots of room for human error.  The pump is a great tool for the potential to successfully control diabetes but it isn't the answer.  My kids are still responsible for counting every carbohydrate they eat, checking their blood sugar and putting all those numbers into this little machine that does the math for them and so that it can secrete the right amount of the magic insulin.  But it doesn't account for extra activity, crazy teenage hormones, a set that doesn't work correctly or falls out at an inopportune time, or a sick day.  All things that the body of a person without T1 does without an ounce of thought. 

And, now, back to where I began.  Research!  Europe is so far ahead of the US in this area.  The first closed looped artificial pancreas was started just this last week.  Two places making great strides on this continent are Sanford Health and the University of Minnesota.  (Those that know me may be shocked I would promote U of M, but remember it's only their hockey team I have a problem with!) Many studies have been successfully able to produce the cells necessary in animals but they can't get them to stop producing. (They become cancerous.) The one I found most interesting was the use of endometrial cells to create islet cells.  This would eliminate the need for anti-rejection medication because a woman could use her own tissue.  They have found that BCG- a tuberculosis vaccine- can be an effective vaccine if you are found to have the antibodies that predispose you to developing T1.  The list is endless.  JDRF- the Juvenile Diabetes Research Foundation- funds nearly 60% of the current studies going on in the US.  86% of all funds donated to JDRF go directly to research for Type 1 Diabetes.  This is only possible due to the tremendous amount of volunteers and ongoing fundraising efforts.  These studies also pave the way for insight into other autoimmune disorders.  Links below are provided for some more reading on these studies and JDRF in general.  These studies currently provide hope and I pray for the day the provide a cure!

http://www.mmf.umn.edu/diabetes/stories/index.cfm

http://www.jdf.org/

http://www.jdrf.org/index.cfm?page_id=116413

http://www.sanfordresearch.org/ResearchCenters/SanfordProject/

http://www.sanfordproject.com/Newsroom/JDRFPartnership/

Back to School

School starts next week.  I seem to have blocked this from my mind and all of a sudden here it is!  So, today I have been making lists.  School supplies, D supplies for school, Gluten free snacks for TJ, touch base with school nurse, forms to dietitian, update health plan...you get the picture. 

We have been pretty lucky, I think, with our school experiences.  Thinking back to Tylie, her daycare provider  and preschool teachers were right at the hospital with us learning to count carbs and treat highs and lows.  When she started kindergarten, there was no school nurse, but we met with school staff and created a health plan that worked.  At that time we were still mixing "cloudy" and "clear" and she did not get a shot at lunch time.  Wow- we have come a long way!  We did have some struggles with Taya.  She told me- way after the fact- that the teachers at the daycare she went to before kindergarten would make her eat all by herself.  They said she ate too slow and they couldn't keep track of it in the big group.  She hated going to this center.  But, we always thought it was because she went there alone, without any of her siblings.  It wasn't until recently that she even told me about this memory!  If I had known I would have pulled her out of there so fast.  I still drive by there and want to march in and ask what they were thinking!  She told me of teachers that made her walk up and down the hall in an effort to lower her blood sugar.  She has always been so secretive about having diabetes and these two stories showed me why.  She is slowly working her way through this and having an insulin pump has really helped her to be more compliant.  This is not to say she doesn't struggle but we see progress.  While Taya likes to pretend she doesn't have diabetes, Tylie has been known to use it to her advantage.  Her 5th grade teacher told me once that Tylie was always low at music time.  Well, after some investigation it seems she didn't really like music.  But she really liked spending time in the classroom with her teacher!  But, overall, their experience was good, particularly in elementary school.  The teachers were open and willing to meet.  I came into the classrooms and talked with the kids.  It still breaks my heart when I hear the bad experiences that others have had. 

When TJ was diagnosed he was still at the daycare the girls had attended and T was more than willing to learn how to give shots and get a refresher on fingerpokes.  He also attended a preschool.  There they had not previously had any children with diabetes but the director had gestational diabetes with her last pregnancy and agreed to give him his shot at lunch time.  For kindergarten he attended the same school the girls had but now there was a nurse!  Wow- is she amazing!  She is as irritatingly organized as I am so she double checks everything.  I love it!  When he was also diagnosed with Celiac she contacted the school district dietitian and helped us create a plan so he could eat lunch at school most days of the week.  This year she is as excited as I am about no shots but I have no doubt she will monitor him with his pump just as stringently. 

They have all had their back to school appointments so basals and bolus' have been tweaked.  Now I will work on updating health plans and packing tubs of snacks to take to the class open houses next week. I still will worry if their blood sugar got checked before lunch or if they remembered to bolus or if the teacher remembered to grab TJ's juice boxes for the field trip.  But, I am thankful for the support we have and the plans in place.   The big girls are lucky enough to have their parents teach in the buildings they go to school in so we will go shopping for a stash of snacks for there as well.  Actually, I kind of enjoy the times they have to come to my room because their blood sugar is low.  They usually bring a friend and you can learn a lot about them they don't normally share! 

My goal for this school year are for the big girls to consistently remember to check at lunch time and in the busy mornings.  It is difficult with teenagers because if I remind them, they are annoyed that I am treating them like babies. However, if I don't they "forget."  I don't think that battle will really end, but my hope is that they get to a point where they don't need me to remind them.  Taya actually has a pretty cool plan.  She has a spare meter she put at the end of her bed with a note to herself saying, "Check!" with an arrow pointing down.  It will be the first thing she sees when she wakes up and the last thing she sees when she goes to bed.  Tylie also makes lists.  They have both made huge gains in this area so I am really hoping for the best A1c's ever at their next appointment.  As for TJ, my biggest worry is actually school parties and snacks and more related to gluten than to insulin.  And I will write more about that later!