Robot Parts: Pumps, Pods, Dexcoms, Glasses, Braces and Understanding Forever

Tuesday, April 7, 2015

Type One diabetes brings with it many, many doctor visits. 

Sweets visits the endocrinologist every three months for a check up.  She gets yearly labs drawn.  If she's lucky.  She has been needing labs every six months to check her cholesterol level (that's a story for another time...).  She does all the normal stuff, too, like dentist and orthodontist visits and regular pediatrician visits.  And she visits the eye doctor once a year to check her eyes for signs of damage due to high blood sugar. 

Sweets, however,  has been seeing a eye specialist since she was six months old.  Jason has some pretty significant vision issues.  To make sure that Sweets did not, she visited his specialist when she was tiny.  Luckily, she was fine.



He told us that she would most likely need glasses at some point due to Jason's eyes and mine (I got glasses at five.).  However, she has always been able to see way better than either of us.  So we just kept an eye (hee hee) on her and those yearly eye exams began again at age three when she was diagnosed. 



A few weeks ago, we went for our yearly exams.  I was thrilled that my eyes actually improved!  And we were very happy to hear that Sweet's eyes looked good and healthy!



And then...
She hopped up into the chair and covered one eye and started to read the chart. 


And she got most of them wrong. 

Jason and I just looked at each other.  We knew what that meant.  And we knew it was coming... we just didn't expect it that night. 

"Well, Kiddo..." her doctor said.  "Welcome to the club!  You need glasses!"

"How is she going to handle this?" I wondered.  She always likes to try on the frames while we are there but playing and actually needing them are two different things.  How is she going to feel about wearing something else???

I didn't have to worry long.  Sweets was THRILLED! 

She immediately got to run out and try on frames while we waited for our eyes to dilate.  She picked out a very cute pair of Vera Bradley glasses that matched her bookbag.  Of course. 


She was super excited to show them off to her friends! 

But she had to wait...

Because the next morning she had an orthodontist appointment before she went to school. 

To get BRACES.

Back in August, she got a spacer.  It's done an incredible job.  In fact, it's worked perfectly and it's job is done.  All she has left is to wear braces on her top four permanent teeth for a few months. 

She was NOT as thrilled about this. 


The spacer was difficult and uncomfortable.  She refused to eat for about a week.  She was afraid the braces would be worse.  And she was worried she was going to look weird and that it would ruin her smile. 

Sigh.

Getting glasses isn't easy. 
Getting braces isn't easy.
Getting both in less than 24 hours is crazy.

And when you've already got an insulin pump and continuous glucose monitor that you wear 24 hours a day, every. single.  day... 

That's a lot. 

That's a lot for anyone.  But it's especially a lot for someone who just turned nine. 

As a mommy, I worry.  How is she going to handle all this?  Why does she have to deal with so much?  Why can't her eyes just be good and her teeth just be straight? Why does she need ONE MORE THING???

But you know what?

It was harder on me than her. 

She was a total rockstar. 



The braces ended up being easier and less painful than the spacer. 
And they - and the glasses - were a huge hit at school! 

She came home all happy because everyone wanted to sit by her at lunch and see all her new stuff. 

Go figure.

Honestly, I shouldn't be surprised by this.  If I've learned anything over the past few years it's that Sweets is one tough cookie.  If diabetes doesn't keep her down, why in the world would a pair of glasses and a few braces? 


She's a lot stronger than I realize. 

And more perceptive. 

Because just as I thought she was ok with all this, she asked...

"So only a few months and I get the braces off, right?" 
"Yes" I said.  "The doctor said only 5-6 months."
"Ok... Do I have to wear the glasses forever?"
"Yes... Well, sort of.  He said to wear them at school.  You don't have to wear them at home unless you want to. "
"But I'll need them forever?"
"Yes... I mean, one day you might decide to wear contacts like me.  But you will most likely always need them to help you see."
"Ok.  So that's like diabetes.  It's there forever."

Heart.  Crushed. 

She's just trying to figure it all out.  To make sense of it all. 
She wasn't upset about it.  It was all very matter of fact. 

But for me... Sometimes it's hard to watch her comes to terms with a chronic illness means as she's growing up and getting a better understanding of forever.  

She is still happy with her new glasses and happy that the braces are only there for a short time (while making her look very grown up and more like a teenager than a nine year old).

And I'm super proud of her. 

For not letting ONE MORE THING get her down. 
For taking it all in stride. 
For being much tougher than the teenage boy who was getting braces at the same time and spent quite a few minutes hanging over the sink because he thought he was going to get sick.
And for being her confident little self. 

I hope that diabetes has helped her see that who she is is not dependent on her physical appearance.  Just as a pump and cgm don't change her worth... neither does glasses and braces. 

That's a pretty deep lesson to learn.  But as I watch her navigate all these new robot parts, I think she's doing an incredible job.

While I'd never wish this disease on anyone, I'm very thankful that we have - at least for now - found a way to use it and it's lessons for good.  And that the person it is helping shape her into is one who filled with confidence and beauty  and strength. 

Cheer Banquet the night she got her braces! 

The Princess Meets The Queen

Monday, April 6, 2015

Like many of you, we first heard about Sierra Sandison, Miss Idaho, last summer.  I was immediately drawn to her story and platform. 

Raising any girl has it's challenges.  Raising a girl with Type One diabetes adds a whole new dimension.  It makes an already complicated situation even more so.  Little girls are looking for role models and learning about traditional standards of beauty (no matter how hard we may attempt to redefine this).  Any difference or deviation can be seen as a tragic flaw. 




An insulin pump and a continuous glucose monitor attached to your body at all times....
Fingers full of little holes from all the testing...
Having to pull out a kit and test your blood...




You can imagine that doesn't make adolescence any easier. 

So I was thrilled to hear about Sierra and her platform that what makes you unique is what makes you beautiful. 



But it's more than just words.  Sierra doesn't just talk the talk.  She walks the walk.  She wears her pump proudly and refuses to let it define her. 

Sweets and I had the honor of interviewing her over the summer.  You can read that here!

And we were thrilled to watch her strut her stuff on the Miss America stage - pump and all!  You can read about why we thought that was such a big deal here!




We had the honor of meeting Sierra back in November when she visited our JDRF chapter for a few events.  Sweets was so thrilled to actually meet her in person... and get to try on that crown!



When we found out that Sierra was coming back to participate in our Type One Nation Summit this Spring, Sweets was ecstatic!  She considers Sierra to be one of her good friends! 

One of the many things that Sierra does is visit schools and talk to students about diabetes and her platform.  As a teacher and a parent, I love this so much!  We immediately began working with Sierra to see if we could work out a visit Sweet's school. 

I thought this would be a great thing for her school!  Raising awareness and educating is always a good thing!  But I think it's important because it's not just Sweets that has T1D at her school and in her district.  This year she's one of three in her school.  A few years ago, she was one of eight.  There are around 30 students with T1D in her district.  That's an insanely large number.  (At least to me...!) 

Education.  Awareness.  Advocacy. 
Kids are being diagnosed like crazy. And listening to Sierra speak is a great way to bring this to light.  It's not just about the T1 kids... it's about all kids. 

So we got it worked out and Sweets was counting down the days!

She had her special outfit picked out and a present for Sierra ready to go...

And then....

Bomb threat. 

I kid you not. 

Not at Sweet's school but at the high school.  However, the way the campus is situated, you can't get to Sweet's school without going by the high school.  The high school kids were evacuated to some of the other schools close by.  Everything was locked down. 

And Sierra's assembly was cancelled. 

Luckily, she was still able to speak at one of the schools in our district where Misty's daughter, Ally, attends.  This is a great thing for the kids at that school who are all a little older than Sweets. 

However, Sweets was distraught.  There were many tears and "This is the worst day ever!" was said numerous times.  (She's a bit dramatic...)

I told Sweets that she would still get to see Sierra the next day at the Summit and that helped a little bit.  But not much.  She was so looking forward to sharing this with her classmates!

Being the incredible person that Sierra is, she felt badly about the situation and that Sweets was upset.  She didn't have time in her schedule to try it again the next week.  So she did the next best thing...

She invited Sweets to go see Cinderella with her after the Summit! 



Now THAT made it all better! What an incredibly sweet and kind thing to do!




We are so thankful that we've had the chance to meet Sierra in person.  She is everything that she seems to be.  She is sweet and kind.  She is smart and athletic.  She is a wonderful role model for all kids - but especially little girls with T1D! 


Thanks, Sierra!  Living life and growing up with diabetes along for the ride isn't easy.  But having incredible people like you to learn from and to inspire us makes it much easier!

The Summit: A JDRF MUST

Saturday, April 4, 2015

A few weeks ago, we had the privilege of attending a Type One Nation Summit that our local JDRF was hosting. 

If you have the opportunity to attend a function like this close to home, you should totally do it!  It was a great experience!

We have had a Type One Expo for years but thanks to a generous grant from Dexcom, this year's event was much larger in scale.  I was thrilled to see so many people attend this event!  And I was especially thrilled to see just as many adult type ones attending as there were families with kids!

We had the honor of listening to some wonderful speakers from all over the country!  We heard JDRF CEO Derek Rapp, Sean Busby, Miss Idaho - Sierra Sandison, Moria McCarthy Stanford, and some other wonderful folks speak about different areas on interest. 




Derek Rapp was the keynote speaker.  This was the first time I've had the opportunity to listen to him speak in person.  I really enjoyed it!  He answered questions from the audience and had a lot to say about new technologies and treatments.  This always gives me so much hope!





We also got to see our friend, Moria again!  We met Moira (in person) for the first time at JDRF's Children's Congress when Sweets was a delegate.  Jason and I both really enjoyed listening to Moira speak about life raising a child with T1D.  We can really relate to so much of what she says! And as Sweets is getting older, I find I'm more and more able to embrace her message of hope with open arms and less worries and fears!


The summit was the first time we have had the pleasure of hearing Sean Busby talk about his life with T1D.  His story fascinated me!  From his diagnosis story to his travels around the world, I was captivated!  And it really made me want to go see the penguins that he talked about!  Sweets would absolutely NOT get her picture taken with him!  I think it was the beard!  But she said that he came and talked to her class and she thought he was pretty cool, too!  I can't imagine doing the things he does without T1... doing it while managing diabetes is quite impressive.




Of course, we know this lovely lady!  Sweets was so excited to see Sierra again after interviewing her over the summer!  As parents, we love the message that she sends to the kids that what makes you unique is what makes you beautiful.  I love that Sweets has a lady like this - someone who is smart and athletic and isn't ashamed of her diabetes - to look up to! 

We also really enjoyed listening to Sierra speak.  She said something that really stuck with us...  She was talking about being emotional when she's low or high and how her family and friends will sometimes discount those emotions because they think they are just because of her blood sugar.  She was saying that doing that can upset her and hurt her feelings because although those emotions might be magnified because of blood sugar, they are still valid and true emotions.  I know that we are sometimes guilty of doing this with Sweets.  And it was great to hear her perspective because it will help understand and empathize more when Sweets has a similar experience.  

There was a great vendor fair where we got to visit with some of our favorite companies and organizations!  We enjoyed chatting with our friends from Dexcom - including the awesome guy who interviewed Sweets and I last summer!  Sweets loves the Lilly Diabetes booth and all the awesome books they have for kids!  She loves Coco the Monkey and the Disney Cookbook!  I also loved seeing all the opportunities to get involved - be it in local support groups or JDRF Advocacy (which is near and dear to our hearts!).  Sweets loves this - all the free stuff is right up her alley!  She came home with a bag full of goodies!

We were also really excited about the Kids Camp that Sweets was able to be a part of!  She was really looking forward to this and it did not disappoint!  She did things like yoga, arts and crafts, and some one on one time with some of celebrities!  Her favorite thing was the magician!  We have been treated to many a show since then! 

She loved the independence of the camp and getting to hang out with other kids with T1.  She got to spend time with some of her good buddies and also made some new friends! 





We were really reminded of our FFL experience at this event!  Except this event was FREE!  How awesome is that?!?  Although on a smaller scale, the summit was very much like FFL with great programming for both the kids and adults.  There were really options for everyone depending on your T1 connection and experiences!  It was hard to choose what we wanted to attend!

As a local JDRF SWO board member, I was so proud of the awesome event that our chapter presented!  Our chapter staff is incredible and we are so lucky to have them working so hard for us! 

 This is Sweets with one of her T1 besties (These two are double trouble - don't let those cute smiles fool you! One of the last times these two were together they ended up belly dancing on TV...) and one of our amazing JDRF staff members! 

I highly encourage you to attend an event like this if you can!  We are already looking forward to next year!

Flying Solo: Easing Into Independence

Wednesday, April 1, 2015

How is it already April? 

Somehow in the midst of cheer games and tournaments and conferences and a birthday and just LIFE... time has gotten away from me! 

We've had a lot going on lately.  There's been a lot of exciting, new things!  And there's been a lot of our normal status quo. 

After living with diabetes for so long, it has become part of our status quo.  It's just what we do.  And even planning for something that might require doing something different diabetes wise is just part of the routine. 

It's become so routine that I didn't even realize how big a deal one Saturday in March really was.  Until it was over. 

Sweets was invited to a birthday party for one of her good friends. 

We had a crazy day.  We had a baby shower in the morning, a birthday party in the afternoon and a  JDRF event that evening. 

I did not want to sit at a birthday party and handle diabetes for two hours.  Even though this girl's mom is a friend... I just wanted to be like every other mom and drop her off. 

And guess what?  I did. 

We've gotten to the point that Sweets is wanting more independence.  She goes back and forth - wanting independence and wanting us close.  That's just being nine, I guess.  But I want to make sure she gets the independence she craves - without letting diabetes play much of a consideration.  I want us to be able to let her do things without diabetes being part of the equation. 

There was a time that i never thought that would be possible.  I thought that diabetes would always the first thing I thought of on occasions like this.  I thought it would always make things more difficult.  I thought it would always be a pain in our rears. 

But guess what else?

It's really not. 

As diabetes has become just part of our lives, that's what it's become.  Just another part.  Not the most important part.  Sure - it's still a pain in the rear.  And yeah, it does make things more difficult.  But not like I thought it would.  We just do what we need to do and move on. 

So when we thought about this birthday party...
And how she wanted to go alone...
And how I wanted her to go alone...

We just did it. 

The birthday girl's mom has knows Sweets since before she was dx'd.  She doesn't exactly know what to do to care for her, but she is aware.  Sweets had her diabetes bag and her Dexcom (that at the time was hooked up to the Nightscout rig - since then we have switched to the Share.  More info to come on that...).  We told her to call us when she was ready to eat. And we left.

She called us and told us what she was eating.  We told her what to bolus.  She said they were having cupcakes later.  So I told her that when she was ready to eat a cupcake to bolus this much and just eat it. 

And she did.  

Well, sort of. 

She bolused for it just like she was supposed to.  But then she didn't like it. 
SO SHE ATE SOMETHING ELSE INSTEAD!

She didn't call.  She didn't ask.  She just did what she thought she needed to do. 

Was it perfect?  Was it what I would have done? 

No.  But that's ok.  She wasn't too far off on carbs.  And it was at the end of the party so we just had her eat something else when picked her up.  But she tried.  And we praised her and encouraged her and let it become a learning experience. 

Later that night, it hit me.  What we had done.  What she had done.  All on her own. 

It's something that so many people take for granted.  How easy it is to drop your kid off at a party.  And it's something that when they are first diagnosed and when they are so little you wonder if you will ever be able to manage. 

But we did!  I was pretty proud!  Of ALL of us! 

I used to wonder if we would ever be able to let her go... But now I know.  We can. 

It might not always be as easy as this was. 

But she's going to fly solo.  It's just who she is. 
And we will be right there to catch her in case she falls and cheer her own no matter what. 

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