The Night Before Christmas - Diabetes Style

Friday, December 25, 2015

Merry Christmas!

I hope you have all had a wonderful holiday!  We have a had a lovely day and Christmas Eve!

Diabetes, however, was not quite so lovely!  I was up until about 4 am waiting on low blood sugars to rise.  Ugh!  However, I used my time to write my own version of "The Night Before Christmas"!  I hope you enjoy it! 

And from our family to yours, Merry Christmas!



The Night Before Christmas - Diabetes Style

'Twas the night before Christmas when all through the house, not a creature was stirring - not even a mouse.  The stocking were hung by the chimney with care in hopes that St. Nicholas soon would be there. 

The Hubs and I were nestled all snug in our bed while visions of good blood sugar danced in our heads.  I in my yoga pants and Dad - not wearing his cap - had just settled down for a rather short nap (3 am blood sugar check - you get it...)

When from our daughter's room there arose such a clatter, I sprang from my bed to see what was the matter.  Away to her room I flew in a flash, threw open her door, tripped on something she hadn't put away and made a loud crash!  Her Dexcom shone with a very bright glow - giving luster of midday to test strips lying below. 

When what to my wondering eyes should appear but a number so low it filled me with fear.  More rapid than eagles her supplies how they came.  I whistled and shouted and called them by name.  "Now meter, Now test strips, now lancet and wipes! On smarties, On juice boxes, On pudding and tabs of all types!"  To the front of her lips - not a bit we let fall!  Now eat away, drink away, eat away all!

Then back to the kitchen I hurriedly flew for more armfuls of juice boxes and glucose tabs, too!  And then I did hear as I rushed back to her room, four little beeps!  The under 55 beeps of doom!

I drew in my head and was turning around.  Her Dad, down the hallway, he came with a bound.  She was under the covers from bottom to top.  Her pillowcase was tarnished with random blood drops.  Her hands were well hidden behind her small back.  Testing blood sugar that way would require quite a knack.  Her eyes were still closed.  She looked sweet and merry.  Until with a sip of juice she muttered, "I like APPLE.  NOT CHERRY." 

She was still asleep but fussing.  A right grumpy little elf.  I laughed as I saw her in spite of myself. 

But a fluttering of eyes and a turn of her head soon gave me to know I had nothing to dread.  She spoke not a word but went straight to her work.  Drinking and chewing.  Then sitting up with a jerk.

Her fingers she held in front of my nose.  A quick test reveled that her bg had rose!

She pulled her covers back close now that she was out of danger.  Looking again like a sleeping little angel. 

But I heard her whisper as we walked out of her sight, "Thanks for taking care of me, Mom and Dad.  I love you.  Good Night!"




Laughing All The Way

Sunday, December 20, 2015

"If we couldn't laugh we would all go insane." - Jimmy Buffett

Isn't that the truth?  Sometimes it's happy and joyful laughter.  Sometimes it's more maniacal.  But at least we're laughing!

We've doing a lot of laughing since I posted last!  I'll let you decide what kind of laughter it's been!

It's hard to believe it's been so long but then the past four months have gone by in a bit of a blur... And there have been many times that I thought that if I wasn't already crazy, crazy was right around the corner.  Here's what we've been up to...



At the start of the school year, Avery got a new school nurse.  Surprisingly, I wasn't as uptight about this as I would have guessed.  Just her being older and more knowledgeable about her diabetes helped put me at ease.  A little.  But the unknown is always a little scary. 

Her wonderful angel of a school nurse for the past few years knew she was leaving and put together a big binder of how to's and even trained the incoming nurse at the end of last school year.  Then a few days before school started, that nurse quit.  So here we were about three days before school started with no nurse.  Cue freak out and maniacal laughter.

They hired a new nurse and I made an appointment to go in and talk to her the day before school started.  The three of us walk into the clinic with all of her supplies and orders and such... and who do we see?  Not just her NEW nurse but her OLD nurse!  Cue the tears!

Her wonderful, incredible nurse had come all the way back to spend the first few days at school making sure that "her girls" were taken care of and that things went smoothly. Avery said, "I think she knew I was going to be a little nervous without her so she came to make sure we were all ok!"  What a blessing she is! 

We have also been blessed with a wonderful new nurse!  She has a BIG job and she's handling it and learning about diabetes and doing a great job! 

One of the other things that has been keeping us busy is cheerleading!  I took on the role of the director of the basketball side of our peewee cheer program.  I'm also currently coaching Avery's basketball cheer squad.  That is keeping us quite busy!  In the fall, Avery started practice with her competition cheer squad.  She was thrilled to make the competition team after trying out in the spring.  

 

  
Competition cheer kind of took us by surprise and presented some new challenges.  I did not coach her squad.  So that meant that Avery was on her own at cheer practice.  Originally I thought I might have sit in the car during practice but honestly, neither Jason nor I wanted to sit in the car for two hours twice a week.  So... we let her have at it and try handling her care on her own!

It was definitely A LOT of trial and error.  We knew that traditionally cheer and especially tumbling made her blood sugar drop like a rock.  So we started out under blousing and doing minus basals.  Only have her end up... high.  What we didn't take into account was the nerves.  Avery is a good cheerleader.  She's used to being one of the girls who is able to do the routines well without much practice.  She's used to having some of the highest jumps and cleanest motions.  But on the competition squad... everyone else is good, too.  And some of these girls were able to do more tumbling than she could.  So... again, cue the tears!  It was a great learning experience for her.  And she totally stepped up to the challenge.  She shook off those nerves and got after it.  She practiced and practiced and practiced and now she's got an amazing toe touch and round off back handspring!  I'm so proud of her effort and perseverance!

 

She really handled the diabetes aspect well.  Her coaches were awesome and kept and eye on her.  But she handled things on her own.  She would text or call us if she was low or high or didn't feel right.  To our pleasant surprise, often she would text us what she THOUGHT she needed to do and she would be right on! 

The largest issue was AFTER practice.  She practiced for two hours twice a week.  As she got more confident in her tumbling, the more she did at practice.  So TWO hours of tumbling and dancing and you can just imagine what that did to her blood sugar.  Sometimes even into the next day.  It was not at all uncommon for her to run low for an entire day after practice. 

The kicker is... we never did figure out a fool proof method for handling it.  We would think we had an plan and we would try it and it would work.  And then the next time it wouldn't.  Cue more maniacal laughter.  Or bad words.  Or both.  It got to the point where J and I would be talking about what to do and we'd say, "Well, whatever we THINK we should do - let's just do the opposite." 

But what are you going to do?  She LOVES cheering.  We would never keep her from it even though it resulted in many sleepless nights and great frustration for US.  She just rolled with it.  Just like she always does.  The lows and highs never seemed to faze her much.  She pushed through the tiredness and the headaches and just kept doing her thing.  Did I mention that I was really proud of this girl??

We were a little worried about the competitions because she would be away from us and not really accessible for a period of time.  We had no idea what the nerves and excitement would do to her blood sugar or how to handle her care.  We did not want her to wear her Dexcom receiver while performing so what we did was have her wear through the warm ups and then give it to one of her coaches right before she was to perform.  If we noticed she needed to do something - we would text her.  It really worked quite well.  The nerves never affected her numbers on competition days and it all went really smoothly. 

Something else new for us this fall was getting RID of our Dexcom receiver when we upgraded to the G5 system.  We now just use our iphones!  Avery was thrilled to have one less thing to carry around with her during the day.  She wears her phone in the pouch around her waist just like she always has.  We love the share aspect because we can check in on her throughout the day and night.  Our phones also alarm and alert us when her blood sugar is too high or too low or dropping quickly. 
 
 This is what the app looks like on her phone. 
 
 And here is an example of the ugly blood sugars we saw just so you know I'm keepin' it real and not lying!
 
Y'all know my love for Dexcom and it just keeps growing!  I didn't think I could love it any more but I do!  We love just using the phones!  I wasn't sure how that would play out and if it would work ok at school but it's been great.  It works just like the receiver did.  And she also can text us with questions and we can text her should we need to.  It's been a nice help in transitioning her to caring for herself. 

All of the independence we have been able to give her this year at cheer practice and competitions and birthday parties and just in LIFE would not have been possible without our Dexcom keeping watch.  I trust that little thing more than I've ever trusted any piece of technology before.  I don't know if it would be so "easy" to let her try things on her own without knowing that Dex is keeping a watchful eye on my girl and we will be alerted if there is a problem. 

It's not just nice for US, either.  Her teachers and nurse love it, too!  They love knowing that it is keeping track of her.  AND that we are able to see and keep tabs as well!  My parents have also put the app on their phones so that they can have access to her numbers when she is with them.  They don't set the alerts - her phone alerting is enough for them.  But it gives them piece of mind!  AND - they check on her from time to time when she's not with them, too!  I'll get a text - "Is everything ok?"  "Her numbers have been low... cheer?"  It's nice to know that someone else is checking on our girl!  I've also had my best friend put the app on her phone!  She loves it, too!  She said she loves being able to just look at her phone to see what Avery's number is and not have to bother her by asking!  She likes to check it a lot when she's watching Avery - just to be sure she's ok!  I really appreciate that! 

My love for the G5 is really another post entirely!  But it's been a huge blessing and really helped us give her the independence that she is so craving!

JDRF has also been keeping us busy - as usual!  I don't think that I mentioned that I was honored as the Volunteer of the Year for our chapter at our Gala in May.  I was totally blown away and shocked to receive this honor!  We had a great time at the Gala and raised a lot of money for diabetes research! 

Gala selfie in the car!  A is too busy reading to smile!
 
We also put together our walk team, The brAVERY Bunch, to participate in our 7th walk!  We were thrilled to raise around $15,000 this year! 

In all honesty, this was a tough walk year.  After SEVEN years, people just aren't as willing or motivated to donate.  Now, I know you may be thinking that I'm insane because we raised so much money... but last year we raised over $22,000!  With all of our cheer responsibilities, I didn't have the time or energy to do as many fundraisers as I had in the past.  We didn't have anyone walk with us this year.  It was a cold, rainy day - and we just told the couple that were actually willing to come to stay home and keep dry!  I get it... Many of our friends have kids and responsibilities that keep them very busy!  It's not always possible to walk with us.  And it's not always possible to raise a ton of money.  But we just keep at it and we don't give up.  We know that every bit helps.  And we know this isn't a sprint - it's a marathon.  There will be bumps in the road.  We've just got to keep going.

School, as always, is keeping us busy and laughing!  At least for me, the laugh has a bit of crazy in it and makes my eyes twitch!  Avery is having a great year and has two incredible teachers who are teaching her so, so, so much and really bringing out her confidence and independence!  I am also having a good year - although a very challenging one!  I love, love, love my kiddos!  I have 24 kinders in my class this year.  When we have 26, we get an instructional assistant.  I've had an IA for the past five years.  Before that we shared other assistants.  This year I'm totally on my own.  In a way, I really like that!  But it's been challenging because I'm used to being able to do things a certain way or do more, bigger, grander things because I have help.  Sometimes I forget that and find myself swamped and overwhelmed! 

Our house has been another MAJOR cause of laughter - mostly the eye twitching, crazy kind!  We started a rather large renovation in September.  It will finally be totally finished TOMORROW!  It's involved packing up every room in our house into boxes.  And unpacking them all again. And sometimes repacking and re-unpacking again!  It's involved living mainly in our bedroom for a week. And being without an upstairs bath (shower) for a week.  It's involved so much dust I could build a snowman.  It's involved having a refrigerator in our living room.  And it's involved realizing that packing up our "necessities" involves a rather large box of diabetes supplies. 

We've been surprised at the change we've seen in Avery the past few months.  She's wanting more independence.  That's normal for any kid her age.  But throwing diabetes into the mix adds another layer of concern.  We've let her go unaccompanied to birthday parties and cheer parties and play dates.  I can't say she always has handled diabetes "perfectly" - but she's learning and she's doing quite well!  One day her nurse got on her at school for punching her carbs and insulin into her PDM and delivering so quickly that the nurse was not able to double check.  I understand her concern.  But we did have to realize that Avery made the correct decision.  And that sometimes at home she just lets us handle it... but that doesn't mean she isn't paying attention.  On her own and with other caregivers she knows her stuff.  That's a proud and bittersweet moment of realization. 

I miss blogging.  I miss all of you.  I love that I still get emails and talk to many of you on Facebook and Instagram!  I hope to find the time to write more in the new year... I need it.  It's good for my soul.  And I'm always honored and surprised when it helps someone else, too!

So...
It's been four months filled with many, many things - but we're still laughing all the way! 
And I consider THAT a successful few months! 

Keep Laughing, Friends!

We've Got It In The Bag! Diabetes Supply Bags and What We're Loving Now

Wednesday, August 12, 2015

You know what's a really hot topic for people with diabetes and/or their parents???

SUPPLY BAGS!

Everyone is always interested in what kind of bag you are using!  You may like what you have but you always wonder if there isn't something out there that's maybe just a little more... perfect. 

I love bags.  I have a blue million of them.  Just ask my husband!  And that's because I am always searching for that perfect supply bag!

Here's what I've been using...

This is probably my favorite.  We had another one that we used until it was just too disgusting to use it any longer. 



It is a cosmetic bag from Target.  I like that it's small enough for me to throw in my purse. But it's big enough to hold our essentials.

Here's the inside...




It's got two zippered pouches in the middle.  One is mesh and one isn't.  We keep low supplies in one and a meter and strips in the other. 

There is one zippered pouch on the back inside side.  That's where we keep the glucagon, lancets, etc.

The other inside side has places for make up brushes.  I took the thread out of one of those making it big enough to hold the Omnipod PDM.  I left the other ones smaller for the lancing device.  It would also work for insulin or an insulin pen. 



Another bag that we have used recently is a Timeless Beauty Bag from Thirty One. 









Avery liked this bag because we could put her name on it!  But we also liked it because it was a little flatter and could be smushed up to fit into her bookbag a little better.  My mom likes this one best because it has handles that she uses to carry it! 


It has lots of zippered pouches inside! It's nice that they are clear and you can see in them!  There are also elastic holders that you can for syringes, insulin, etc. 

There are some places that sell supply bags and they are super cute!  I just have never found one that works well for us.  I really love the cases from Sugar Medical.  My only issue with those is that there isn't room for the glucagon and that's a deal breaker for me.  I've got to have that gluc with us at all times. 

So, that's what we are using now!  If I find something else I love, I'll let you know!

What do YOU use!  What do YOU love?!?

Back to School With T1D

Sunday, August 9, 2015


Whether you are sending your child with diabetes to school for the first time or you have doing it for years, there are some things you might want to consider before the first day!  Keep in mind, the following is all based on our personal experience as a family and my experience as a teacher. What works for us and is important to us may not be the same for you.  Also, our experience is elementary based but can definitely be modified to meet the needs of your middle or high school student.  



Before the Year Begins…

As soon as you know who your child’s teacher is going to be, set up a meeting.  We feel it’s important to meet with the teacher before the year begins.  You might want to include the school nurse and the special area teachers in this meeting.  Keep in mind that it will most likely be very difficult to find a time when all these people can attend!  What works for us is to meet with the nurse and the teacher separately.  We do not feel we need to meet with the special area teachers.  



Create a diabetes fact sheet for the teacher and the special area teachers.  You can find samples of these under the “School and Caregiver Info” tab.  We include a picture of our daughter at the top.  We also make sure the teacher has an extra copy or two for his/her substitute folder or other needs.  We also create a more detailed information sheet for the teacher that explains type 1 diabetes in more detail.  During our meeting, we go over this sheet and explain how type 1 diabetes affects her at school

Tips for a Successful Meeting…


The most important thing is to approach the meeting with a positive attitude and in a spirit of teamwork.  Most teachers don’t know anything about type 1 diabetes.  However, this does not mean that they won’t be willing to learn.  In my experience as both a parent and a teacher, most teachers truly want what is best for your child.  That’s how I approach the meeting… with a “I know we both want what is best for my child and so let’s talk about how we can have a successful year together!”  


Things you will want to discuss with the teacher:

birthday party treats
food or candy given as rewards
academic concerns related to high/low blood sugar
classroom parties
your child’s unique high/low symptoms
procedures for safety drills
lunch
field trips
anything else you may be concerned or unsure about

There is no right or wrong way to handle these things.  It will vary and depend on the needs and personality of the child and teacher.  

I have offered to send in treats that were more “bg friendly” for our child for the teacher to use as rewards (including small, non food items).  I have also offered to volunteer and/or send in things for classroom parties (I’ve been known to volunteer for the drinks and buy small water or the low carb juice options!)  We would rather our daughter be included in all treats and special occasions than to sit out or have something different from the rest of the class.  We know that covering these treats may not be done perfectly or like we would do it but feel that it’s ok on occasion.  This is when we stress that she CAN eat anything and SHOULD be included in all activities.  We discuss our plan for this - when she is to go to the nurse to check her bg and get insulin, etc.  You might prefer to send in treats so that your child always has something with a known carb count or have your child bring rewards home.  This is entirely up to what works best for your child and your family! 

We have created a special bag for our daughter to take with her during emergency drills that she keeps in her classroom.  We also know and have had some issues with her not being able to perform/remember/etc when her blood sugar is low or dropping so this is when we talk about that and ask that she be reminded to look at her cgm and write that number on top of all tests.

Things you will want to discuss with the nurse:

orders from the doctor
supplies
procedure for checking blood sugar and giving insulin
the plan for the day (when your child will check bg, etc)
lunch
snacks
birthday and other classroom treats
training staff about type 1- including bus drivers!
procedure for substitute nurses
if your child is going to check in the classroom/handle some of his/her own care
how to treat lows/highs
safety drill procedures
playground procedures
anything else you may be concerned or unsure about

Again, there is no right or wrong way to handle these things!  It will vary and depend on the needs of your child and other factors like school/district procedures and policies.  Some nurses have previous experience dealing with T1 and some do not.  Something that I like to stress during this meeting is that every T1 is different so how it was handled with a previous or current student may not be the way it should be handled for my child.  For example, the amount of free carbs given to treat a low might vary considerably.  I also approach this meeting in a spirit of teamwork and collaboration.  I try to be as flexible as possible while making sure my child receives that care that she needs.

You will want to make sure you have extra supplies including meters, strips, juice boxes or other low treats, extra pump supplies, possibly extra insulin, alcohol wipes, ketone tester and strips, glucagon, numbing cream, teagadrem, lancets and lancing device, etc.  This can save you from running to school all the time if something happens!


I also give the nurse copies of our diabetes fact sheets, directions on how to use our insulin pump and cgm, and information sheets.  I give her copies of the fact sheet for the special area teachers and ask her to pass them out.  I come with copies in hand and do not ask her make copies on her own!  You can also make lanyard tags with diabetes information to give school staff (template under the school tab).

The 504 Plan

Creating a 504 plan is a personal decision for you and your child.  My feeling about a 504 plan is that it’s best to get one when everything is good and wonderful and you don’t need it instead of waiting until there is a problem.  I actually created one for my daughter when she was still in the same school building as me because I wanted her to have it in the future!  

Know your rights!  You are allowed to have a plan in place!  You can find information about 504 plans, IEP’s, and other diabetes management plans on the ADA’s Safe at School site (including state specific information).   http://www.diabetes.org/living-with-diabetes/parents-and-kids/diabetes-care-at-school/

You can find my sample 504 plan under the school tab and links to other plans for children of different ages using different insulin therapies.  



Accommodations you may want to include:

* assurance that there are staff members trained to recognize high and low blood sugar and respond in accordance with the plan and or doctor’s orders
* staff members including teachers, coaches, bus drivers, etc should be trained to recognize high and low blood sugar and know what to do in response
* allow the child to check his/her blood sugar and take necessary actions or make provisions for who will do this if the child is unable
* provisions for where blood sugar will be checked and where insulin will be given
* insuring full participation in all sports, extra curricular activities, field trips, etc with necessary assistance and/or supervision provided
* eating whenever and wherever necessary, including eating lunch at an appropriate time with enough time to finish
* permitting extra trips to the bathroom or drinking fountain
* permitting extra absences for medical appointments and sick days
* making academic adjustments for classroom time missed for medical appointments, checking blood sugar, or due to high/low blood sugar
* academic testing in a separate area with accommodations such as access to water, bathroom, and extra time
* allowed to carry glucagon
    ** taken from the ADA’s Safe at School site and my notes from the Safe at School session at FFL 2014


I suggest contacting your school nurse or principal about creating a plan.  Different school districts have different people who are responsible for creating these plans.  It could be the school counselor, psychologist, special services director, etc.  The nurse or principal can tell you who to contact.  You may be welcomed to create your own plan or the district may want to use a form of their own creation.

Again, I approach these meetings with a spirit of cooperation and collaboration.  Many of the people you are working with you to create these plans do not understand or have a lot of knowledge about type 1 diabetes, it’s effect on the body or academics or the needs of people with T1.  You will need to EDUCATE!  This is very important to creating an effective plan!  Most educators truly want what is in the best interests of your child and will want to do what is needed in order to make sure your child is successful.  They just might need some education!  It’s not uncommon for staff attending these meetings - especially if no one has had a plan in place before - to be worried about what is going to be required of them and that you are going to have unrealistic expectations.  This is why I try to approach all meetings in a very non threatening way and try to be as flexible as possible while making sure that my child’s needs are met and her safety is the top priority.  Your willingness to work WITH staff and not against them will go far.

Other Considerations:


Bus Drivers:  You may want to make an information sheet for your child’s bus driver and give it to him or her on the first day.  That day is going to be a little crazy so maybe do a very quick overview, hand off the information sheet and say that you’re very willing to talk about concerns later when there is more time.  If your child is young, you may want to request that he or she have a seat in the front.
See if the lunch menu is online.  Some have the carb counts listed online.  If not, you may be able to obtain that information from the food services office.

We always pack a lunch for our daughter and include a list of items and carb count for everything!
You might want to take your child with you to the meet the teacher and nurse.  Especially for young children, learning where there classroom is and where the clinic is and how to get from one to the other before the first day can alleviate lots of nerves.

If possible, ask if you can come in to talk to your child’s class about type 1 diabetes.  Disney has created some wonderful books that are great for explaining it to little ones and there are other wonderful books for older kids.  My daughter loves for me to come in and read a book to the class and answer any questions they may have.  It helps her feel more comfortable.  It’s not always possible for me to go in so this past year I just gave the teacher the book for her to read at her convenience.  Now that she’s older, my daughter was able to answer the questions on her own.  The nurse may also be a good person to include in this!  If your child is older, he or she may want to have a few minutes to talk to the class and explain what everything is.  This has helped relieve a lot of anxiety for us when she knows that her classmates know what her devices are, why she’s going to the nurse all the time, etc. 

Good Luck!  We wish you a successful and safe school year!

Her Story, Our Story, Your Story: It's Time to Change the Ending

Saturday, July 18, 2015

What is it about some people that just grab our hearts and don't let go?

There are just some people and some stories that have that way about them.  

For me, and for many others, Kycie's story is one of those.  

I'm not sure why exactly.  But I think it's because when I look at her, I see my own daughter.  The bright, blue eyes.  The infectious smile and giggle.  The curly blond hair.  The innocence.  

And because it's not just Kycie's story.  It's our story, too.  And probably yours.  

I think that's why I've put off writing this.  Because in order for me to write this, I have to go there.  I have to really go to that place where I know that our stories are really not so different.  And that but for a whisper, I could be the parent grieving the loss of my little girl to Type One Diabetes. 

            Kycie - Age 5                       Avery - Age 4                   

Kycie Terry passed away on Saturday, July 11, 2015.  Hers was a life that ended much too soon.  Taken from this world by complications brought on by undiagnosed T1D. 

You can read the first post I wrote about Kycie here.  And you can follow her story and see darling photos and video of this beautiful little girl here

We have been living with this disease for over six years.  In that time, we have gotten further and further from those panicked first few days and months.  The shock has worn off.  The fear has subsided.  Diabetes has slowly seeped into all aspects of our life and become just another part of what we do. 

Her diagnosis no longer feels like it was yesterday.  It feels like it was a lifetime ago.  The days before are foggy and faded.  I can no longer remember a life that didn't include counting carbs and changing sites and needles and blood and millions of test strips.

Until...

Until last Sunday when I read that sweet Kycie had passed away.

And my stomach dropped to my toes.  Tears filled my eyes.  And I was immediately transported back to that April day six years ago when our lives changed forever. 

I knew.  I knew what it was that morning when we walked to the pediatrician's office.  I didn't want to know - but I did. 

He thought it was flu.  After all, her symptoms could have easily been the flu.  And we had just been there weeks earlier for her three year old well check. 

If I hadn't said that I was worried it was diabetes....

We would have gone home.  And she would have gotten sicker. 

She was throwing up.  She was losing weight.  She was drinking and going to the bathroom a ton.  She was so lethargic that she could hardly walk or stay awake.  Her breathing was labored. 

She didn't have another week to wait and see.  She didn't have a couple of days. 

Had we gone home... 

You know what would have happened.

And so do I.

And although on most days it sits at the back of my memories, hidden behind the passing of time and pressing events of now, it's always there.  That knowledge that drops like a rock to the pit of my stomach.  That knowledge that we could have easily lost her that day.  That knowledge that we were so very close to a different outcome to our story and yet, at the time, we had no idea.

It's humbling.  It's sobering.  And it's infuriating.

How did I know?  How did I know to tell the pediatrician that I was afraid she had diabetes? 

I don't know.  I just did.  Somehow I knew the symptoms.  And it saved her life. 

Please understand, I'm not angry at her pediatrician.  He did nothing wrong.  In fact, he listened to me.  She presented like she had the flu.  But he listened to what I had to say.  He listened to my concerns.

And he tested her. 

He didn't say to wait and see.  He didn't say I was over reacting.  He listened. 

And it saved her life.

No, I'm not angry at him.

I'm angry that any child dies from undiagnosed type one diabetes. 

There is no reason for it.  There is no excuse for it. 

All it takes is one drop.  One drop.  To save a life. 

(Or really, a simple urine test would do the trick!  Had Avery had a urine test at her well visit, it would have showed elevated glucose levels 4-6 weeks before her diagnosis.  Before she was in DKA.  Before she was so very sick.)

Today was not the best diabetes day.  But as I was driving Avery and a friend to the pool, listening to their giggles and chatter about braces and water slides and who they had seen from their class over the summer, I felt so thankful. 

I don't know why Avery's diabetes was caught in time and Kycie's wasn't.  I don't know why we got her to the doctor in time.  Or why I knew the symptoms.  Or why I expressed it to the doctor who listened to me. 

All I know is that I am grateful.  The kind of grateful that makes you fall to your knees and sob. 

And the kind of grateful that says enough is enough. 

No more children should die from this disease.  No more. 

It's as easy as testing one single drop. 

I don't know why Avery survived and Kycie did not.  But I do know that I owe it to that sweet little girl and her incredible parents and family to take that gratitude and turn it into action. 

Let's share the symptoms.  Share our stories. 
Check out Test One Drop.  Read their mission and see how you can get involved.




Do it for my child.  Do it for yours.  Do it for Kycie.
But most importantly, do it for the names we don't know.  The kids who have yet to be diagnosed.  Let's change their stories before they even start. 

Traveling With Diabetes: Planes, Cars and Disney Monorails

Tuesday, July 7, 2015

Traveling with diabetes is never exactly easy!  I think diabetes should count as another person because of all the supplies that you obsessively over pack need for your trip!  

We are, by no means, travel experts.  We do, however, travel somewhat frequently.  So I thought I would share what we do and how we pack it all! 

Most of our travel is done by air.  We travel by car a couple times a year.  These trips are about 5 hours in length - so really not all that far considering.  We travel by air at least 3-4 times a year.  We've used smaller, more regional airports and we've used large airports like Reagan, Orlando, Atlanta, and Tampa. 

As always, this is what we do and what works for us.  I'm fond of the saying, "Whatever floats your boat".  But I heard a good one the other day - "Whatever makes your dress fly up!"  So, you know, if this works for you, too - cool.  If not... cool. 

Packing for the trip can be pretty stressful. 

We've got it down to a science now and we know exactly what we need.  But at first, when diabetes was still so new... it was scary.  I was so afraid that I would forget something vital at home. 

Here's the thing I've learned - we never travel to the back country of Africa or anything like that.  We are always close to a Walgreens or some other pharmacy.  We get our supplies (most of them) from Walgreens.  They are so awesome (They are so awesome!  They even sent us a Christmas card this year!  Which means between A's diabetes meds and J's heart meds and my allergy meds - we are there waaaayyy too often.  We don't even have to tell them our names.  In fact, last time she told us we needed our own bin for all our stuff.  Yikes.  But seriously - it's kind of comforting that they "know" us...).  I know they can order or call the doctor for anything we would need.  I also know I can call our endo clinic and they will hook us up.  And I know for things I can't get like that - there's the amazing DOC.  Put out a cry for help and someone will be able to hook you up.  That's pretty comforting, too!

Here are some pics of what we pack and how we pack it:



Our diabetes supply bag for traveling is the picnic thermal from Thirty One.  There are a couple of reasons why I love this bag for this purpose. 
1.  It's not too big and not too small.
2.  It has a nice strap that makes lugging it through the airport easier. 
3.  We can smush it into another carry on for the plane if needed.  Or leave it out. 
4.  It's a thermal bag.  So when we get where we are going, we can use it as a thermal if needed. 
5.  It's cute!

We are usually gone anywhere from 7-14 days and this bag fits aaaalllll of our stuff.  And I pack a ton.  I want to make sure I have enough!  So I always pack way more than I need. 


I pack boxes of strips (again - way more than I need), a back up meter and strips, and an extra lancing device.  I leave all the stuff she uses each day in her regular supply kit.  Sometimes I put it on top of this bag and sometimes I throw it in my purse.  Just depends. 


I pack Dexcom sensors - again, way more than I need.  I also pack the Opsite Flexifix we use to tape down Dex (that's the stuff in the baggie that almost looks like a roll of graph paper - LOVE it.), a tube of numbing cream (because we still use it - even though she doesn't NEED it, she likes to have it.  It's all mental.  But if it makes her feel better, I'm down with that.  That's not to say we leave it on the 30 minutes or whatever it says... Just having it on is all she needs.), and extra glucagon and a mini thermal pouch.  The mini thermal is also from Thirty One and that's where we put our insulin with a freezer pack. 


This is just a little wallet thing that I used to use.  It's the perfect size for the alcohol wipes and adhesive remover wipes. 


 This is another of my many bags.  This one is Vera Bradley.  I put the Teagaderm adhesive in there (we use the Tag to cover the numbing cream.)  Also in this pouch are extra batteries for the meters and for the Omnipod PDM, syringes - just in case, and extra low treats. 

Not pictured are the boxes of Omnipods.  I leave them in the box (I sometimes grab a whole box of Dex sensors, too - depending on the length of our trip.).  One nice thing about Omnipod is that it's all in one!  But if you're using different pump, then you need all tubing and reservoirs and stuff.  When we were using a tubed pump, I just grabbed another bag for that stuff. 

And then there is always this:



This sits out on the kitchen counter with the bag so we don't forget the insulin!!! 

So that's WHAT we pack and what we pack it all IN!

Here's some other things that I've learned or that we do when traveling...

* Juice Boxes - We used to add those to our supply bag when flying.  This caused the most problem out of ANYTHING.  Some places didn't care when we said it was part of her medical supplies.  Some places acted like it was poison and patted us down.  We finally decided it wasn't worth the hassle.  If she really needs juice we can get it once we get through security.  But honestly, she's fine with the other stuff for a flight. 

Speaking of air travel....

* We have a note from our endo saying that she needs all these supplies, yada, yada, yada.  We keep it in that exterior pocket.  We used to get one each time we went somewhere.  But not once in six and half years has anyone, in any sized airport, ever asked to see it.  We just carry around an old one in case. 

* We usually get all our stuff on the conveyor to go through x-ray and then say to one of the workers standing there - "This bag has medical supplies in it."  That's it.  They've never searched it.  Never even paused over it.  Unless there were juice boxes inside! 

* The picnic thermal and all those supplies I was talking about is a carry on bag.  We do not check ANY of our diabetes stuff.  As I mentioned, we can put that bag inside of a larger carry on if needed.  I know this may not be possible if you have more than one person with diabetes in your family.  My suggestion would be to pack as much as you can in a carry on bag and then maybe put your extras in a checked bag for "just in case".  

* We always go through the metal detector and not the full body scanner.  They just send us there - probably because A is a child.  And I always go right behind her.  Sometimes J has to go through the whole body thing and sometimes he doesn't. 

* I never mention that she is wearing an insulin pump.  Or a cgm.  It never beeps.  She just goes through and that's that.  Another awesome feature of the Omnipod!

* Back when she had a tubed pump we sometimes took it off and sometimes didn't.  Sometimes they would swab it or her hands or both.  Sometimes I had to get swabbed and patted down, too.  Which was ridiculous when she was only 3... but then people are ridiculous about doing horrible things and I'd rather the security take precautions.  I will say that everyone we ever encountered was super nice to A.  It would make her nervous and they would go out of their way to make it as easy as possible.  I know some people will ask to pass the tubed pump around the metal detector.  That's up to you...  It's been so long since we did that I'm out of practice there! 

* Sometimes she wears her Dex receiver through the metal detector and sometimes it's in my purse.  Again, we never mention it. 

* Confession - although you are probably technically supposed to turn Dex off during flight (and that probably goes for the Animas remote and the Omnipod PDM) - we do not.  We leave it on.  Same for the PDM. 

* I will often set a temp basal increase for travel.  Especially when traveling in the car - but we also find when flying, she needs some extra basal because in everyday life she does not ever sit still for two hours - let alone five. 

* Some folks have encountered post flight lows.  You can read more about that from my friend Melissa here.  She did some awesome research!  For us, this does not happen.  Maybe it's because she uses the Omnipod.... I don't know.  But I can tell you that for whatever reason, she's not low after a flight.  She's usually on the high side.  Could be her pump.  Could be excitement.  Could be the lack of movement for an extended period.  Could just be a weird thing that is just her.  But - you should read Melissa's blog just in case!

* We don't over share.  I've mentioned this before - and, of course, this is totally up to your comfort level.  But we don't tell the nice people at security and elsewhere that she has diabetes or is wearing devices and things like that.  I imagine it's easier for a child to pass through without a second glance.  But we used to tell them she had on a pump or cgm before she went through the metal detector or explain what was in the supply bag, etc.  And then we realized that they didn't care.  This has been pretty consistent whether in was a huge airport in Washington DC or a small, regional airport in Sarasota.  (Although, for the record, Sarasota has been the pickiest of all - especially with those darn juice boxes!)  Now we don't say it's diabetes supplies, we don't tell them who has diabetes and we don't point out any of the devices on her body.  Nothing beeps.  No one asks us.  And we're on our way.  

* In case you are interested - here are the names and prices of the Thirty One bags I use:
Mini Thermal Zipper Pouch - $15
Picnic Thermal - $35

* Random learning:  We recently went to Disney.  It was HOT.  98 degrees with 98% humidity.  The day we checked out we left our diabetes supply bag with the concierge while we went to the park.  We thought this was better than putting it in a hot car all day.  When we got our stuff, it had not been in the air conditioning as we had thought.  You could feel the heat radiating from the bags.  We were not headed home - just to the beach for another week.  I was worried about our supplies.  Especially the pods.  But everything was fine.  While I don't recommend doing this, the heat didn't seem to bother any of the supplies.  So if it happens, don't freak out!  It may not be a disaster!
*** If you want to know about how we handled Disney in the extreme heat, just leave me a comment and ask!***


* THIS IS WHAT WORKS FOR US!  THIS SHOULD IN NO WAY BE TAKEN AS MEDICAL ADVICE!!!  Sorry, didn't mean to shout.  I just want to make sure you get that just because we do it this way does NOT mean that you should do it this way.  You've got to go with your gut and use your head because no one knows your body or your child's body like you!  I simply wanted to share what we pack and what I've learned in case someone might be interested!  But you know... whatever butters your biscuit!

I used to get pretty uptight when we traveled wondering if diabetes was going to cause all kinds of issues with security and traveling.  But now, we honestly don't even think twice about it.  In our experience, it has always been pretty easy! 

Don't let diabetes hold you back from anything - especially traveling!! 
Go wherever you want to go - and just take diabetes along for the ride!

VitalPak - A Review and Give Away

Thursday, May 14, 2015

A few weeks ago, we were given the opportunity to try a new product designed for people with Type 1 diabetes and other medical needs called VitalPak. 

VitalPak was created by nine year old Kyle Houlihan after he was diagnosed with diabetes.  "VitalPak is a medical backpack with a removable snap-in Essentials Kit that allows Kyle and others living with diabetes to carry all their essential medical supplies and devices without drawing attention to their disease.  VitalPak is the brainchild of Kyle, with the help of his father, Tom Houlihan.  The father-son team created the backpack  after searching for a product that would not draw attention to Kyle disease while also giving Kyle the functionality, style and organization to keep all his supplies in one place.  VitalPak can always be customized to help those who suffer from other conditions, such as asthma or allergies, where minutes can make a difference in treatment.  It can even be configured as a portable first aid kit for active families and individuals."


To see Kyle talk about his creation, click here!

VitalPak features include:
  • Durable, water resistant, nylon body material

  • Shoulder straps with layers of foam for added support and comfort

  • Padded back panel with for extra mid and lower back support

  • Large main storage compartment

  • Large front mesh drop pocket

  • Small front panel stash pocket

  • Removable, Snap-in Essentials Kit 

VitalPak comes in black, red, orange, dark grey, light grey, and blue!

Of course, we love supporting people with T1 - especially kids with T1 - who are working hard to make living this disease more manageable and efficient.  Sweets is getting to the age where she is becoming more independent with her care.  She's also starting to want to make her supplies a little more inconspicuous.  This made VitalPak a great fit for us!

We really liked the idea of the removable essentials kit.  We thought that this could really come in handy when traveling when there are times you might need an entire backpack and other times when that wouldn't be necessary.  I can see us using this bag while traveling.  I think it might be the perfect bag for our upcoming trip to Disney.


We like the size and comfort of the bag as well.  It's not quite as bulky as a regular backpack and it's definitely more comfortable.

I must say, Sweets was not overly thrilled with this bag.  She is a nine year old girl and if it isn't purple, pink or covered in glitter or sequins... she's not into it.  It was too plain for her.  Which, ironically, is part of the whole idea of the supplies being kept more discreet.  But like I said - she's all about the glam. 

My husband was a big fan of this bag!  He is used to having to carry around all those glitzy, girly diabetes bags.  He is very tired of our Vera Bradley!  He really liked having a bag that was a little more masculine.  We can really see this bag appealing to men and boys! 

My husband and Sweets like to ride bikes together.  When they do this, someone has to carry the supplies.  And it's not her!  He liked having this bag to use for bike rides.  No more girly bags.  No more uncomfortable bags or trying to rig something to the bike.  This backpack was a good fit! 

I think this bag could really come in handy for those who are athletic and involved in different kinds of sports.  There's a place for your diabetes that is easy accessible and also a place for your sporting equipment, extra clothes, etc.

Want to try it out for yourself?!?

Enter Here!

a Rafflecopter giveaway
 
You can also get your own VitalPak right now by clicking HERE.  Until Monday, May 18th at 9 am the bags are 25% off!  

Good Luck! 

VitalPak provided a bag for this review.  All thoughts and opinions are my own. 


Happy Mother's Day: To All the T1 Moms

Sunday, May 10, 2015

Happy Mother's Day!

Being a mom is not an easy job.  It is filled with situations and experiences that you never dreamed you'd ever encounter.  You find yourself doing and saying things you'd never imagined.  You're more tired than you've ever been.  And you find yourself loving those little people who call you Mom more than humanly possible. 

It's not for the weak, that's for sure.

And when you add Type One diabetes into the mix...

Wow.

The job becomes infinitely harder.

As moms of kids with Type One Diabetes, we deal with all the stuff other moms deal with.  And then so much more.

We keep our kids alive on a daily basis while functioning as their pancreases (pancreai?  I don't know the plural for pancreas.).  We measure and weigh their food.  We count every carbohydrate that goes into their mouths.  We calculate insulin doses and have this constant running dialog of how much we should give based on factors like activity level, illness, hormones, and the phase of the moon.  We learn to give them injections and to insert different devices into their bodies.  We learn to live on little sleep.

We worry that making a mistake could kill our child.  Or affect their long term health.

We have found that diabetes has an uncanny way of making us feel like a failure as a parent.  Because very little of what we do works perfectly more than once.  Because we can't make this disease go away.  Because it shows us how little control we really have.  

If motherhood changes you as a person, being the mom of a T1 definitely changes you.  It makes it so much easier to lose yourself in all of the mothering and caregiving.  We find that one day we look in the mirror and don't recognize the person looking back.  We wonder where that girl we knew went.  If she's ever coming back.  And if anyone even realized that she left. 

Although we knew motherhood would bring it's share of difficult situations.... we didn't expect this.

But we've learned that we can do it.  We can be doctor, nurse, psychologist and mom.

We've learned that we can give our kids shots and do things that other people say, "I could NEVER do that!" - because we've learned that we don't have choice. 

We've learned that we are a lot stronger than we ever imagined.

And we've learned that this journey is so worth it.  Our kids are so worth it.  And everything we've gone through and will go through is making us into some pretty incredible and strong people.

On this Mother's Day,  I want you, fellow T1 Moms, to know that I see you. 

I see the you that drags into a darkened bedroom in the middle of the night to test a blood sugar.
I see the you that fights with the insurance company.
I see the you that gets up after only a couple hours of sleep and goes to work all day long.
I see the you still cries - no matter how long it's been.
I see the you whose heart breaks when your child isn't included in something because of T1.
I see the you with tears in your eyes when you have to hold your child down for a shot.
I see the you that is afraid of what might happen in the future.
I see the you that is full of nerves and apprehension - but still a smile - when your T1 is gaining independence.
I still the you that does everything possible to make sure your child is able to do what everyone else does.
I see the you that tirelessly advocates and fundraisers.
I see the you that hurts because of friendships you've lost with people who don't understand this life and it's demands.
I see the you that is letdown - again - when someone you thought would step up and be there for you... isn't.
I see the you that puts everyone else first.
I see the you that thinks that no one notices how hard this job is.  That no one asks how YOU are.  
I see the you that wonders if YOU even exist anymore.  

I see you. 

And I want you to know that you're doing a great job.

We don't hear it often enough.  So I want to tell you again...

You are an amazing mother.

You are doing a great job.

You can do this!  You ARE doing this!

So today and on those days to come when you begin to falter and question yourself know that I see you.  And I respect you more than words can say.  And I'm honored to be part of this "club" with you.

Happy Mother's Day - to some of the most amazing and incredible women I know!

A facebook friend posted these and I knew I just had to share them with you!  Enjoy!


















Signs of Spring: Green Grass, Blue Sky, Blooming Flowers... and 504 Plan Reviews!

Tuesday, April 28, 2015

Spring has sprung! 

The arrival of spring always brings with it the promises of things to come...

Flowers, blossoms, leaves, sunshine, blue skies, warmer temperatures....

and a 504 plan review!

In the spring, we always get together with A's school staff to review her 504 plan and make any needed changes for the coming year. 

504 plan reviews and the development of such plans can bring with a lot of anxiety and frustration. 

But it doesn't have to be that way!

I was totally honored to be asked by Disney's T1 Everyday Magic website to write an article for them about just that!  As a teacher and a parent of a child with T1D, I have a unique perspective on managing the school system.  The article is called "What Your Child's Teacher Doesn't Know About Type 1".  And you can read it by clicking HERE!

We are lucky to have no difficulty with A's 504 plan.  In all honesty, our meetings last about 10 minutes because we have not made any changes for the past few years.  A few years ago we added accommodations specific to standardized testing and since then it's been working perfectly. 

I am expecting to begin to need to tweak her plan a bit probably next year and she's gaining more and more independence in her diabetes management and we will want her plan to reflect that. 

But for now, it's good! 

I feel strongly about the need for a 504 plan.

And if anyone didn't need one - it was me!  We created a plan for A when she went to preschool.  At that time, she was in my school building where I teach.  I handled all her care.  And I trusted our staff completely.

So why would I want or need a plan?

I feel strongly that the time to create a plan is when everything is going well.  Don't wait for trouble.  You want the plan in place before trouble arrives.  That's what it's there for!  I view it as a safe guard. 

I knew that A would not always be in my school or in my district.  When she went to first grade, we moved her to the school district that is where we live.  And it was wonderful to be able to have her plan move with her to her new school and district. 

If you are new to all of this, take a look up at the right side of the blog where it says "School and Other Caregiver Information"  Or just click here.  You will find lots of different information that we use for school including teacher information sheets and a sample 504 plan.  (I don't think this is our current plan but you'll get the idea and what you want in your plan is entirely personal and up to you!)  There are also some links to other sites you might find useful!  You also might want to check out the ADA's Safe at School website for great information about the law and more! 

If you want my best advice for having a successful meeting your child's school... just read the article

Good Luck!


SIX

Monday, April 27, 2015

Six.

Six years ago today Sweets was diagnosed with Type One Diabetes.



Looking back... she was just a baby!  

It's hard to believe that it's been that long.  And yet it feels like it's been part of our lives forever. 

Year one... that was a big deal. 
Year two... we were inpatient after Sweets had a low induced seizure.  That sucked.
Year three... that one marked the point where she had lived longer with diabetes than without it. 
Year four... we celebrated by going to see Taylor Swift! 
Year five... that one was rough.  That one was really hard and emotional.  It was powerful for many reasons.  You can check that one out here

Year six. 

This one is different. 

Dare I say.... this one is just another day?

Not everyone celebrates a diaversary.  I get why you would want to forget that day.  There are parts I would love to forget. 

However, we choose to celebrate it.  We use it as a day to honor all that she goes through with diabetes.  We acknowledge all that goes into keeping her healthy.  And there is so much YUCK that goes with diabetes - if there's a way we can add a little fun into it - we are all for that! 

Because today was filled with school and work and JDRF meetings and dance class, we celebrated yesterday.  We went to dinner and got ice cream - which is what Sweets wanted to do! 


So today...

It was so different than the past diaversaries have been. 



In the past I've spent the day thinking of that day.  And what were doing.  And what it was like.  Reliving those emotions. 



But today... Today I barely remembered. 

Maybe it's because we've been so busy.  This past week has been filled with cheer clinics each night for a couple of hours.  Of course, before and after clinics involved practicing at home!  Saturday was try out day!  And then we waited all day for results.  This really kept our minds focused on one thing... cheerleading!  The good news is that Sweets made the competition cheer squad for fourth grade!  We are so proud of all her hard work!  Now we're already planning for the coming season - uniform fittings and coaching meetings (I'm coaching her basketball squad again). 

Maybe there just wasn't time to think about April 27. 


Or maybe...


Maybe we are entering a new phase of life with D.  A phase that I've felt might be on the horizon. 


Maybe after six years, diabetes is just so ingrained into the fabric of our family that her dx day is truly just another day. 


I'm sure there will still be days when it all overwhelms me.  I know there are still tears to be shed over this disease. 

But maybe it's truly become such a part of who we are as a family that we forget not everyone counts carbs and tests blood sugars and tweaks ratios and set countless overnight alarms. 


And maybe.  Hopefully.  There's a lot of hope in that. 

Because at first... I didn't know if we'd ever get to this place.   Those first days... year... was so overwhelming and scary and lonely.  All the what ifs.  All the fears.  All the unknowns.  All the firsts.  Wondering how we were going to have a normal family life.  How she was going to be able to be a normal kid. 

But we've done it.  SHE has done it.  We've come so far...


And so... I think that is definitely something worth celebrating!


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!

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