Friday, August 29, 2014

A Teen and Her 504

We completed our final back-to-school meeting at 8:00 a.m. today.

In planning the meeting, I thought a lot about where we are in our t1d journey.  Oldest daughter is heading into eighth grade and this will be her last middle school year.  While I do not expect her to hold all of the t1d reins, I do want to continue to empower her and gently lead her to the independence that college and living on her own will require.

Sigh.  Did I just say 'living on her own'?  That's some scary stuff for me, friends.  The reality is that I do know that it will happen one day.  I am also savvy enough to coax a gentle landing to independence than a fiery crash.

So after thinking about that (and the fact that I have five years left with her) I did a couple of things differently.

Instead of me working by myself to update her care plan, I asked oldest daughter to join me.  I told her that I wanted to hear her ideas and thoughts of how the previous year had gone.  What things would she keep, change or add?  Looking at me with wide eyes, she gladly and happily jumped right in.

Her idea was to start thinking back to September, 2013 and sorting through each class experience (she had about 10 different teacher experiences to remember).  After reviewing the year and taking notes, we then went through the 504, identifying any changes.  And she LOVED being a part of the process. And a I LOVED her helping.  Most especially, as we were able to remember some really great parts of her 7th grade year.

After our story telling/review session, we sent an email to her 504 coordinator and asked for a meeting.  We did this together, so that I could help model a way to ask for what she needed.  One day, she will need to set up doctor appointments or perhaps meet with college administration.  Some communications will require phone skills, but for this, an email was enough.  It was simple, with just a few back and forth messages to acquire a date and time.

Prior to the day of the meeting, we talked about who should do what.  She wanted to take a stab at reviewing the documents and I agreed to handle the glucagon injection training.  We also both felt that at any time one of us had something to add, we could speak up.  I also wanted to set that ground rule so that she didn't feel like mom was taking over or that she was messing something up.

Finally, this morning we headed to our meeting.  Nervous but excited, oldest daughter pulled out the 504 to begin the review.  She stumbled a bit but quickly gained momentum the more that she spoke.  By the end, she was relaxed (and probably relieved) and empowered.

She did it.

Yes, she did it.

Not just mom or dad or the 504 Coordinator.  Instead, our smart little teenager.

She wasn't ready last year or the years before.  Today she was.  And from now until college, we will have more of these moments.  Gently guided, carefully planned and probably a few surprises.  Through them all, she is going to find her way to independence.

This is how I know that it is ok to let go.

Wednesday, August 27, 2014

Back to School Pats On the Back

When they were both in elementary school... giggling at the apples for the teacher!

Like most families, we have been busy preparing for our daughters to start back to school.

I won't belabor the fact that this is one of the most time-consuming preparation endeavors we deal with all year (insert major sigh) because you already know that.

And quite possibly, the most stressful.

I suspect that you already know that too.

With opinions on how to do everything coming from social media, other families, doctors, teachers or even blogs like mine, it tends to make things even worse.  

True story - I even felt it last night while sifting through the various T1D groups that I belong too.  Almost every page on my Facebook was filled with a tearful horror story over a school nurse, a child's poorly accepted 504 or just posts from scared parents, unsure of how to send their child off.  It freaked me out so much that I actually emailed a friend this morning to be reminded of how to handle a bad situation.  Noting that we have NEVER EVEN HAD A BAD SITUATION IN EIGHT YEARS!

I get it.

At one time I was in the same position with a newly dx three year-old about to head to pre-school.

It.was.hard.  Like-wanting-to-run-away-and-skip-school-forever-HARD.

But we got through it.  Never once would I tell anyone that it was a perfect experience (and it wouldn't have been even without T1D), but I learned a ton.  The next year for Kindergarten was even better and a year after that, with TWO DAUGHTERS diagnosed, I was ready to start writing the blog, because life was that much better.

Over time, I have also learned not to compare the way that WE are doing it ('IT' being living with T1D) with the way OTHER PEOPLE are doing it.  The temptation is there to compare with T1D families, doctors, teachers or even bloggers over what needs to happen to be successful and that is just a bunch hooey.  Letting go of that will help free you of not only keeping up with the Jones, but also to realize that you are doing just fine.  And my friends in blog land, whether you feel it or not, you really are doing just fine.  (and after patting yourself on the back, feel free to ignore me :) )

The other big life lesson is that streamlining that to-do list and learning to say 'no' is also extremely helpful.  If this is your first year starting back to school after dx, you have full permission to say no to the PTO, the band parents, the bake-sale organizer or even the after-school play-date scheduler.  Take the time that you need to figure out how to incorporate life with T1D and success will easily follow.

I say this as a reminder to all of the T1D parents that are stressed or worried:  You will get through this.  Your child will learn, grow and meet lots of friends.  You may still worry and mistakes may still be made, but at the end of the year, you will look back on the experience with pride for your child, your school and most especially yourself.

You got this!

Tuesday, August 12, 2014

Calling All The Endos, Calling All The Endos...

On Friday, I placed a call to our CDE and asked for help regarding set-up.  After our initial experience with failing 2:00 a.m. sensor insertion, and then our follow-up with the sweet Medtronic reps, I felt it best to make sure our endo team had a good look at how I had set up our insulin pump.  

Not to mention that I felt pretty defeated by the entire new pump experience and wanted at least one pat on the back.    

Unfortunately, the call back did not happen.  Not on Friday.  Or Monday.  Or even today, Tuesday.  

As the week ticked on, so did our supply box of infusion sets.  While a box of ten infusion sets would normally be enough to last a month, our teen aged daughter also had an active week which included multiple sleepovers and tons of swimming pool time.  Her normally sticky sites proved not to be so sticky and before we both realized, our stock had dwindled down.  Suddenly, we were staring at the last infusion site in the box.  

I wanted to cry.  Feeling my stress, oldest daughter DID cry.  And for a second time in a row, I wanted to question my sanity as to why I thought switching insulin pump brands was a good idea.

With kindness from our t1d friends, a few offered us help with supplies to get by until our next shipment.  Thank goodness for the DOC because without them, we would surely flounder.  

However this isn't the way that I feel most comfortable.  I am the girl that loves nothing more than a plan and a routine.  The last few weeks have been more than rough on my needs.  Nothing like flying by the seat of your supply pants.

I even attempted an online order for a cartridge product that allows infusion sites from Animas to work with Medtronic in an effort to use what we already have.  My thought was that if our endo group was going to wait, maybe I could take care of the supply problem myself.  

Efforts were thwarted with that idea because on Monday, I received a call telling me that the online company needed a script in order to send them.  Sigh.  Nothing I could do on my own.

So, I reached out a second time on Tuesday and called our endo team back.  

As it turned out, our regular CDE happened to reside in a pocket of town that received a freak heavy rain storm, causing major housing flooding, making it difficult to leave or get to work.  After explaining this, our endo receptionist staff forwarded my request to another CDE and marked my call as 'priority' for a callback.

And this is the magical part of the story where sometimes fate intervenes in a big, positive way.  The CDE that returned my call was AMAZING!  She reached right through the phone to give me a big giant hug with her kindness and understanding.  She also offered both solid advice and more encouragement.  She happily took my new CareLink information and promised to review everything and call us back.  Then she straightened out the supply order, noticing that we should have received 15 infusion sites for the month and promising a quick delivery of five more.  

Not even ten minutes later, I received a second call back to let me know that she wanted to make sure she had the correct color of Mio's because "Kid's color choices are important".  

Amazing stuff.  

And maybe that is another reminder of why it is so important to have such a great team around us at all times.  

Thursday, August 7, 2014

Walking For A Cure

We recently completed our annual JDRF Walk To Cure Diabetes.

As is in most towns, our walk is being realigned with the JDRF vision of  'One Walk', which helps to explain the community involvement of not only persons living with type 1, but all of the family and friends that come out to support the vision of making type 1 into type none.

From the JDRF website:  Each year, JDRF One Walk™ (formerly JDRF Walk to Cure Diabetes) brings together more than 900,000 people to change the future of type 1 diabetes (T1D). Many of these people have T1D themselves, and many more are friends, family, or coworkers of someone challenged by this disease. But no matter what their connection is, they walk because they believe in a world where T1D no longer exists — a world where Type One has become Type None.

This year, instead of walking at regular location, we chose to head back to our beloved Alma Mater at Michigan State University.

You know that feeling you get when you go home?  Well, that was the feeling that we had upon arriving on campus.  My husband and I met, fell in love, graduated and even got married a year later at the campus chapel.

The girls have been to more MSU events than I can count as we have been sending them subliminal messages about the importance of choosing MSU for their own college education.  I kid, of course.

Well, sort of.  It would be super cool to relive our glory days.  I kid again.  Sort of.  ;)

No matter, by all regards, the walk did feel like homecoming, but even better, as we were surrounded by our t1d pals.

Which is important to remember.  We walk to support JDRF and ultimately, a cure for type 1 diabetes.  We also walk to show support for our daughters and for all of the friends that we have met along this journey.

Yes, I want a cure for my two, but I also really want a cure for our friends and most especially, the future generations that are yet to come.

It's time.

Let's turn type 1 into type none.

If you would like to join in a walk near your location, click HERE and simply scroll to the bottom of the page to enter your zip code to find a walk event close to your 'home'.  And as always, thank you for supporting a cure!

Wednesday, August 6, 2014

You've Come A Long Way Baby!

Change is good.


On the left, the one of the earliest Medtronic Insulin pumps, the Minimed 506.  On the right, the latest Medtronic Insulin pump, the 530g. 

Yes, change is good.

And now I can finally see that beeper resemblance circa 1992.

Tuesday, August 5, 2014

When You Fall Off A Horse, You Call A Friend

After my last post of the 2:00 a.m. debacle, a few things happened.

First, we had our walk to cure t1d.

Then, we had our hospital patient picnic.

And then, we had a friend that generously shared a visit with Medtronic.

All three of those events were highly helpful.  At the walk, I was able to talk to a Medtronic representative at his booth.  While he was trying to understand what was happening to our sensors, a friend from our local support group stopped by the same booth.  Overhearing our conversation, she offered the girls and I a chance to stop by her home for a planned visit from her rep at Medtronic.

Talk about stars aligning and being at the right place at the right time.  I jumped at the opportunity and made plans immediately.

The next day, during our picnic, I ran into a few different families that were also trying out the 530g and had similiar error issues with their child's sensors.  While this isn't exactly what you want to hear, it is also helpful in the sense that suddenly, you feel less alone.  These are common issues that most likely have resolutions.  The best thing is to focus on finding out what those resolutions are.

Two days later, I was able to go to the friend's house and meet her rep from Medtronic.  In the way that can only happen from a group of knowledgeable individuals, our information was shared and resolved.  After two hours, oldest daughter - listening in at the meeting so that she knew - and myself, felt 100% more comfortable than we did on the night before the big birthday.


My take away is that while I feel like I shouldn't bother our reps or our hospital staff, especially after 8 years, I still need to remember that we are learning on this journey.  Taking advantage of a professional's knowledge base is not only valuable but absolutely necessary.  And really, I need to do more of that.

One final moment that had me feeling a bit in awe was hearing my oldest say that she wanted to insert the CGM sensor while we were at our friend's house with the Medtronic rep.  With more bravery than I may ever have had in my life, she carefully cleaned off her belly, held up the sensor and gave it a click.  It was scary and terrifying for both of us but she was so determined to be the one to insert the sensor.


I think that was a critical moment in turning the negatives of the situation that we had been in, right back into a positive.  When the sensor calibrated and the blood sugars started to appear, it wasn't because of something that mom did.  It was by the strength and determination of oldest daughter's own mind.  She 'fixed' the sensor.  And now, she has the confidence to continue to be proactive in her diabetes care.

I wish we could bottle up these success moments.  I would make us swill them like a shot.  Especially for those 2:00 a.m. ugly moments that happen once in a while.  But we can't, so the next best thing is to write this down and try to remember that feeling.  I may even print this one off and tuck it away for her to read when the going gets tough.