The Princess and The Pump: A Type 1 Diabetes Blog

When Your Invisible Illness Isn't as Invisible As You'd Like

noreply@blogger.com (Hallie Addington) — Sat, 09 Jul 2016 17:48:00 +0000

It's hard to believe it's been six months since I last posted! Life seems to have this way of speeding up and before I know it, it's JULY! Wait... What?!?

We have been going along and doing our thing just like always. Diabetes is a part of our lives. But it's not the main part anymore. Instead of being in the front seat like it was when she was first diagnosed, it's now kind of pushed into the trunk.

Except when it rears it's ugly little head.

And makes me wonder if it's really been living in the trunk or if, for some of us, it's been riding in the front seat a lot more than I realized.

Avery has always been pretty cool with diabetes.

She was so young when she was diagnosed that she doesn't remember life before. Testing and site changes, and counting carbs has always been a part of her life. It's just the way it is. No big deal.

She's never minded wearing a pouch with her Dexcom - or now her phone - around her waist. She's never complained about visiting the nurse's office. She's never worried about what her classmates think. I never thought she even viewed herself as different.

Until recently...

It started with complaining about having to leave class "all the time" to go test her blood sugar. She doesn't like to miss things and she hates having to leave in the middle of class. That's understandable. So we decided to loosen up her range a bit and live with some higher numbers while she's at school. (Not high numbers - just not as tight of a range)

We also started having her use her phone more to text her Dad (he handles the daily D care at school since I can't exactly tell a class of Kinders to hold on a minute while I answer a call!) with her number. The Dexcom Share is amazing for this. It lets both of us see what she is and how she's trending so it really lets us make treatment decisions together rather than having to always involve the nurse.

We had a new school nurse this year and SHE WAS AMAZING. Seriously, I don't know how we've gotten so lucky! She's a gem and she really learned quickly about T1 and how to handle it. She wasn't just taking care of Avery - - - She had TWO other T1's and a school of about 1,200 kids! I'm so grateful to her - she did such a great job!

Anyway, we are working toward more independence and self care. Hard to believe, next year will be Avery's last year in her elementary school.

At Christmas, this sign was on her list.

I had to get it for her. I thought it was awesome and a little sad at the same time.

She's never liked when random people would ask her about the "thing on your arm". But recently, it's gotten worse.

Avery wears her Dexcom sensor on her arm. Her back (upper bottom but she hates it when I say that) is reserved for her pods. She is still super thin and muscular. The endo has not recommended her belly or her legs be used for sites. Plus, we get great readings and wear out of arm sites. The only downside is that you can see it. She loves the pod because it's hidden. Dex is right out there when she's wearing sleeveless or short sleeve stuff.

School hasn't been an issue. She says they all know what it is and don't ask about it.

The pool is a different story.

We have always had great luck using the Opsite Flexifix tape around the sensor. (Click that link to see what we buy and where. I don't get anything from it if you buy or it or anything. This is just what we use!) We can get a good two weeks out of it. If she's swimming a lot, it starts to come off. And here's the dilemma.

She doesn't want to wear it anywhere but her arm.

She doesn't like it just there on her arm because people see it and ask her about it.

She doesn't want to use any of those decorative tape things to help hold it down because it draws attention.

She doesn't want to wrap it or wear a sleeve because it draws attention.

This is a no win situation.

We have finally decided that for the pool we will wrap it. My awesome Diabuddy, Lora, came to our rescue on vacation when I ran out of Opsite.

Avery and Lora's Kiddos in 2011 and now! They are all growing up waaayyy too fast! Stop!

She let us borrow a roll of CoBand tape. It did well holding Dex on while she swam. Although it's hot pink and doesn't exactly blend in, she would rather people think that she's injured or something than ask about the sensor.

I really don't know what to make of all this.

We've worked really hard to teach her empathy. We've talked about how everyone has their "thing". No one's life is perfect. She has diabetes. Other kids have ADHD or have to split time between parents that fight all the time or have speech problems or a million other things. She gets that.

But...

She's 10. She's becoming a young lady. She's more concerned with appearance and friends now. Her social circle is expanding.

That's hard for any kid. But when you add a disease that means that you might look a little different and have to do different things than your peers when your number one priority is figuring out where you fit in... That's even more complicated to navigate.

I'm not surprised that we are dealing with these issues. I knew it would happen eventually. It's just happening sooner than I thought! I feel like she was just that little girl with her pacifier and her pump!

All we can do is keep moving forward and addressing each "issue" as it arises.

Lord knows, I can't take it away from her no matter how much I might want to at times. All I can do is help her through it. Give her choices. Let her have a say. Keep telling her she's awesome. And being there for her when she needs me.

She's hung her "Different is Beautiful" sign in her bedroom right by her door. I see it every time I leave her room.

And every time, it tugs at my heart.

It makes me proud. It makes me sad.

Just like diabetes itself.

The Night Before Christmas - Diabetes Style

noreply@blogger.com (Hallie Addington) — Sat, 26 Dec 2015 04:27:00 +0000

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

noreply@blogger.com (Hallie Addington) — Mon, 21 Dec 2015 01:37:00 +0000

"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

noreply@blogger.com (Hallie Addington) — Thu, 13 Aug 2015 01:40:00 +0000

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

noreply@blogger.com (Hallie Addington) — Mon, 10 Aug 2015 00:17:00 +0000

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

noreply@blogger.com (Hallie Addington) — Sat, 18 Jul 2015 16:20:00 +0000

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

noreply@blogger.com (Hallie Addington) — Tue, 07 Jul 2015 05:29:00 +0000

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

noreply@blogger.com (Hallie Addington) — Thu, 14 May 2015 04:00:00 +0000

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

noreply@blogger.com (Hallie Addington) — Mon, 11 May 2015 01:24:00 +0000

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!

noreply@blogger.com (Hallie Addington) — Wed, 29 Apr 2015 00:10:00 +0000

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

noreply@blogger.com (Hallie Addington) — Tue, 28 Apr 2015 02:21:00 +0000

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

noreply@blogger.com (Hallie Addington) — Tue, 07 Apr 2015 14:00:00 +0000

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

noreply@blogger.com (Hallie Addington) — Mon, 06 Apr 2015 16:19:00 +0000

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

noreply@blogger.com (Hallie Addington) — Sun, 05 Apr 2015 02:05:00 +0000

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

noreply@blogger.com (Hallie Addington) — Thu, 02 Apr 2015 01:11:00 +0000

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.

Her Story, Our Story, Your Story: Kisses for Kycie and Changing the Outcome

noreply@blogger.com (Hallie Addington) — Mon, 16 Feb 2015 01:04:00 +0000

Six years ago.

February. It was a warmish day. Warm enough that we were able to get outside a little.

Sweets was 2. Almost 3. She was riding her trike around in our driveway. Having fun.

I needed to go to the store. I was looking for beans to plant at school for our Jack and The Beanstalk unit. It was too early and they were no where to be found. I took Sweets with me and we ran down the street to the hardware store.

She was fine. Totally fine.

And then she wasn't.

We got the store and she was lethargic. She didn't want to walk. I had to carry her. She was crying. We went home and she was burning up. Her eyes kept rolling back in her head.

I freaked out.

She had been fine. Active. Happy.

The ferocity and speed of this illness scared me.

We went to the doctor and there was nothing wrong except a fever. The doctor was afraid she may have a blood infection and sent us for blood work. I remember thinking that was awful. They just pricked her finger.

But then they called and said her white count was through the roof and they needed to do additional testing. We went back. This time it was an arm draw. And that, I thought, was beyond awful. I remember thinking I was tired of holding my child down.

Little did I know....

Looking back, I wonder...

Was that the start? Was that the moment her body turned on itself?

She got better.... but after that was when the symptoms of T1 started. The excessive urination. The lethargy. The change in demeanor. The excessive thirst. The weight loss.

It was so subtle....

So subtle that we didn't notice at first.
And yet not subtle at all. Later we would wonder how in the world we didn't see how sick she was.

By the time we FINALLY took her to the doctor....
Well, he said it was the flu. I knew it wasn't.

Luckily, I knew it wasn't. Luckily, I knew what it was.

And if I hadn't said... "I think it might be diabetes..." He wouldn't have tested her. He would have sent us home.

By that time, she was already vomiting and in DKA. If he had sent us home...

That's why the story of Kycie has really grabbed me by the heart. It's thrown me right back to that scary place where we were 6 years ago. It's broken my heart. And made me so very thankful.

I've hesitated about sharing her story. After all, it's not my story to tell.

But they have a facebook page now and want to raise awareness about this disease. And I, of course, want to help.

Because it's not just Kycie's story. It's Avery's story, too. And unfortunately, they aren't alone.

taken from the Kisses for Kycie Facebook Page

Her Kisses for Kycie facebook page shares this...

On January 25th, 2015 sweet Kycie started complaining of a headache. On Monday she said her tummy hurt and a little later she threw up. Her mom and dad figured she was coming down with the flu. She slept all day Monday. She was giving her sprite and water to help her tummy. She did not want any food. Tuesday there was no change, and her brothers started to complain of stomach aches and sore throats. Jamie took Daxton and Kycie to the doctor on Wednesday. They were given antibiotics for strep throat. By Thursday night, she was worse. On Friday they went to the doctor and went to the ER at 1:00pm. By 5:00pm she was life flighted to Primary Children's Hospital with blood sugar of 1148. Her parents had no idea that sweet little Kycie had diabetes!

Enroute to the hospital she had a seizure and another one right when they got to the hospital. She has been unresponsive ever since. At this point her blood sugars are under control. After reviewing her MRI the doctors said that she has extensive damage to the brain. The brain had herniated into the brain stem.They said if she survives to prepare themselves for her to be severely handicapped. They will do another MRI on Tuesday and at that point with decide if they should consider taking her off the breathing machines.

The family is hoping for a miracle and knows that this little girl's life is in God's hands right now. You can show your support to the Terry family by keeping them in your prayers and donating to help with any financial expenses that they have. Let's join together to support this wonderful family! We love you Kycie! #kissesforkycie

You can find her page to make donations HERE.

I haven't been able to stop thinking about Kycie. About what could have been for us at diagnosis. And what could have been when Sweets had seizures from low blood sugar a few years later. Those moments are something I will never, ever forget. And something I wouldn't wish upon anyone else. Ever.

I can tell you that love we felt from all the facebook posts, comments, texts, etc this past week really helped make Sweet's illness and ER visit easier and less scary. I say we do that same for Kycie and her family. Share this blog. Share her page. Leave them some comments of love. Let them know they aren't alone. Let them know the DOC is behind them.

Type One Diabetes kills. It's wrecks bodies. It takes perfectly healthy people and changes their lives forever.

We need a cure.

We need doctors to screen for this disease. It's as simple as a finger stick or a urine dip. In the scheme of things, that not that big a deal. I know it's more complicated than that but still... It's worth it when you're talking about lives.

I'm tired of reading about children (and adults) losing their lives to this disease because it wasn't caught in time. Because they didn't know.

We did know... sort of... and it still didn't keep her out of DKA.

It's time to change the story. Time to change the outcome. Time to advocate for funding, research, and prevention.

I urge you to get involved. Whether it's with JDRF, the ADA, DRI, Dr. Faustman... Our end goal is all the same. Be it in your school, community, state, or country... Nothing is too small.

Do it for Kycie. Do it for my child. Do it for yours.
Do it to make a difference in lives today and tomorrow.

The Tipping Point: Stomach Bugs and T1D

noreply@blogger.com (Hallie Addington) — Sat, 14 Feb 2015 02:22:00 +0000

Those three little words...

Three words no D parents wants to hear...

"I threw up."

Those are the words we heard about 2:30 Monday morning. Luckily she had been running low (we should have known...) and her pump had been shut off or we would have been in serious trouble.

For those who may not know, a stomach bug is especially difficult with type one diabetes. Here's why... when you have a tummy bug, food does not digest normally. This often causes low blood sugar before a person actually gets sick. It also causes lows during and after. Another issue is if the person throws up food that they have been bolused for. When that happens, they have insulin in their body and no food... that means low blood sugar. How do you treat low blood sugar? Food. But that doesn't work so well if you're throwing up. Then, as with any illness, you develop ketones. Everyone gets ketones when they're sick. But when your pancreas works, it gives you enough insulin to bring them down safely. When you have T1, you're not making insulin on your own. If you want to get your ketones down, you need fluids and insulin. Both of those are difficult when you have a stomach bug. Because if you're not eating - insulin is going to make you go low. And if you go low, you need food. And... you see the cycle here. Add in that ketones make you feel sick to your stomach and throw up when they get high. And they can be very dangerous and lead to ketoacidosis (which is life threatening) if not treated. It's just a big 'ol mess.

Sweets spent the morning on the couch feeling poorly. She had a fever and ketones were on the rise. I had her sipping water and trying to eat a popsicle because I knew she needed insulin... but her blood sugar was hanging around 100. And that wasn't high enough to give her additional insulin. At least without food.

We've dealt with a few tummy bugs in our years with T1D. It's never fun. But we've learned what to do. We know how to handle things. And we know that no one wants to go to the ER. So we do our best to manage it at home.

The ER just isn't fun. It means IV's which is good for getting fluids and medicine to fight the nausea. But it's not so fun for little girls who don't want any more needles. It also means ER doctors who are trying their best but often don't know all that much about T1D.

We do everything we can to stay out of the ER.

But with every illness (at least the puking ones), there reaches a point when I start getting nervous and ask myself, "How much longer are we going to be able to handle this on our own? At what point am I putting her in danger?"

The tipping point.

That point came for us Monday afternoon. She was still throwing up. Nothing was staying down. And ketones were skyrocketing. (Blood ketones were up to 2.5. Anything over 1.5 is considered large.) Her little lips were dry and cracked. She had bags under her eyes. And her color was grey. She looked really bad. Really bad. Like death.

So, I called the diabetes center who told us to take her to the ER.

The diabetes nurse I talked to was concerned that her blood sugar was going to drop on the way to the hospital. She was afraid with as sick as she was and with nothing going in that the Glucagon wouldn't work. That scared me - I had not heard that before. Not much scares any more... but that did.

We rushed around getting ourselves ready and put her in the car. Luckily, we are about 20-30 minutes from the Children's Hospital ER. But that day seemed like an eternity. The entire way there, her blood sugar was steadily dropping. Until she was reading in the 60's. I was giving her one smartie at a time to try to at least hold her steady.

We get to the ER... and we had to STAND IN LINE. Apparently, every sick kid in the area uses it as a doctors office. That's a blog/rant for another time. But seriously. They took us right back and got her into a room. They did blood work and we waited.

It's times like this that make me lose patience with the ER. I know they are doing what they have to do. But I knew she needed fluids. However... we waited.

The ER doc came in and told us that her blood work looked good and she had no ketones. Say what?!? We told him what our meter was reading and he said he would call endocrinology.

He came back shortly to tell us that while on the phone with endocrinology, he realized he had misread the report and yes, her ketones were indeed large.

At this point, I'm thinking.... Fantastic. Well, you can probably guess what I was thinking!

They gave her fluids and some zofran via IV.

And then the new ER doc arrived. She came in to talk to us and after a few minutes said, "You folks obviously know what you're doing. What do you think we should do? What would you do if you were in charge of her care?"

It was like the angels started singing!

We were glad she was getting fluids and zofran but our concern was that her ketones were still large. At this point her blood ketones were reading 3.2. I have never seen anything that high before. I didn't want them to release us before doing something about that or we'd be back in the same boat.

I suggested a glucose drip so we could give insulin.

She agreed and called endocrinology again. They did not agree. They felt that she needed to try eat. If she could hold down the food, we could bolus. If she couldn't, she needed to be admitted.

So she ate. A little. A few bites of soup. A couple bites of banana. And some Froot Loops. She loves her Loops but rarely ever gets those.

And it stayed down.

So we were able to give her a little insulin! Yay! Before discharging us, they took her temp which was up to 102. But home we went with some ibuprofen.

Waiting for Daddy and the car... always smiling!

By morning, her temp was down. Ketones were down. They were still large but a lot lower than they had been.

We thought she was on the mend. We thought she was better,

And then she threw up again.

And ketones went back up.

And her fever came back.

We spent the next four days in this limbo. She felt sick because her ketones were too high. She needed insulin to bring them down. But she couldn't eat... and if she couldn't eat, we couldn't bolus. And if we couldn't bolus, we couldn't bring down the ketones. And... on and on.

She was really sick. She laid on the couch and didn't move. If you know her, her sitting still is NOT a good sign. She wouldn't eat. She wouldn't do more than sip water or lick a popsicle. Bg hovered between low and 110. And ketones stayed high.

And so I spent the next four days at the tipping point.

Illness doesn't usually faze me much. I know what to do. I know how to handle things.

But this time... This time I felt like I was constantly walking the line between being able to handle this and.... not.

And as much as that made me nervous, it also surprised me.

I've been going along thinking I've got this. That I can handle what diabetes throws at me. I may not be perfect at it... But...

But what if I can't handle it?

I've been all "diabetes can't stop her.... diabetes can't stop me... people with diabetes can do anything everyone else can do..." And all of that is true...

But maybe that's made me forget that diabetes doesn't play fair.
That diabetes isn't easy.
That it takes a lot of work.
That it's still dangerous.
That it really just sucks.

Sometimes it's easy to forget. That while diabetes has made your kid incredibly tough and amazing... it's done it through trial by fire. It didn't just happen by accident. It happened because your kid (and yourself) have stood tough through all the crap diabetes has thrown your way.

All the testing, carb counting, bolusing, supply ordering, site changes, insurance fighting, decision making, temp basals, corrections, ratio changes, ketone testing, doctor appointment, lows, highs, needles, prescriptions, lancets, strips, alcohol wipes, cgms, pumps, hospital visits...

All that. And more.

We've handled it.

And so... when push comes to shove... I know we'll be able to handle this, too.

Even when we're at our tipping point.

More inspiration from Pinterest...

I couldn't resist. Sorry about the language - but sentiment is right on.

We Have A Name!

noreply@blogger.com (Hallie Addington) — Mon, 09 Feb 2015 03:55:00 +0000

Thanks to everyone who participated in our "What's in a Name?" Giveaway with Lauren's Hope!

We loved seeing all the really great, unique names that you came up with!

Last week we narrowed it down to our top five choices and submitted those to Lauren's Hope.

So without further ado... the winning name and winner of this beautiful bracelet is....

AVERY'S HOPE from Cheddar14!

If you would like to buy one of your own or purchase another one of their incredible bracelets (or other jewelry... they have lots of great stuff) check out that link over there to right!

We love our Lauren's Hope bracelets! Avery wears hers 24 hours a day and it's not only survived the wear and tear of at least a year of her shenanigans but it still looks really pretty! We can't recommend them enough!

Thanks to Lauren's Hope for helping us celebrate ONE MILLION HITS!

And stay tuned... I've got some more great giveaways coming up!

The Top Five: What's In A Name Giveaway

noreply@blogger.com (Hallie Addington) — Tue, 03 Feb 2015 02:23:00 +0000

Last week, I shared with you an awesome opportunity to win this beautiful bracelet created especially for us by Lauren's Hope!

All you had to do was come up with a name...! And when I asked you to get your creativity on, you sure did! We were asked by Lauren's Hope to pick our Top Five favorite names. This was NOT easy! We went over the list again and again. After much discussion, we were able to narrow it down to a few of our favorites.

Our Top Five Names are.... (in no particular order)

1. Bravery Blue - from Cecilia
2. Avery's Hope - from Cheddar14
3. Avery's Journey - from Jazmine Gaytan
4. Princess Blue - from Flip Coo
5. Hope Floats - from Misty

This was a tough call! There were lots of names we liked! I had a little input (Hope Floats is one of my most favorite movies!) but Avery made most of the decisions (Can you tell?!?).

We will submit these names to Lauren's Hope for review and will announce the GRAND PRIZE WINNER soon!

Thanks for playing... And thanks for reading!

SHARE-ing our Dexcom Story

noreply@blogger.com (Hallie Addington) — Thu, 29 Jan 2015 02:45:00 +0000

This week, Dexcom announced some very exciting news!

The FDA has approved Dexcom's new Share Direct system! This system allows the Dexcom receiver to "talk" directly to your smartphone --- without using the Share dock! This is what Dexcom had to say about it in their press release:
"The Dexcom Share receiver uses a secure wireless connection via Bluetooth Low Energy (BLE) between a patient's receiver and an app on the patient's smartphone to transmit glucose information to apps on the mobile devices of up to five designated recipients, or "followers," without the need for a dedicated docking cradle. These followers can remotely monitor a patient's glucose information and receive alert notifications from almost anywhere, initially via their Apple® iPhone® or iPod® touch and in the future on Android devices, giving them peace of mind and reassurance when they are apart."

You can also read some great information about this new product on this post on Diabetes Mine.

So... You know we are pretty pumped about this!

I love that it's iphone compatible and that it doesn't require a dock or cords. I'm all for anything that is going to give her more freedom and independence while still allowing us to keep her safe! I also know that this will help her teachers, nurses, and other caregivers feel more confident in caring for her.

SHE is excited because she thinks this is a great reason why she needs a phone of her own! Nope! It's works with a ipod touch so she's set. Much to her dismay.
We love our Dexcom. We can't imagine living without it. In fact, if you want to SEE and HEAR Sweets and I talk about our experience with Dexcom and why it means so much to us, check out our video! It's on her Dexcom Warrior page that you can see HERE. We made this video with Dexcom over the summer and were really pleased with how it turned out! You may want to grab a tissue before you hit play. Don't say I didn't warn you...

Oh - and I apologize for the ugly cry face. I honestly don't cry that much anymore. Like hardly ever. But for reason... I could not hold it together for this!

I think that just speaks to how our feelings about this product are not just a bunch of nice words. It's so much deeper than that. We are truly grateful to have "eyes on the inside" that enable us to manage her diabetes. We want for her to have a long, healthy life free of complications. And we know our Dexcom is an invaluable tool to make that a reality!

ps - Don't forget to enter my Lauren's Hope Giveaway! Help me name a beautiful BLUE bracelet and it could be yours! You have until Saturday... Click here!

What's In a Name? A Giveaway with Lauren's Hope

noreply@blogger.com (Hallie Addington) — Sat, 24 Jan 2015 20:29:00 +0000

Waaaay back in October this little blog reached a pretty big milestone.

One. Million. Hits.

Are you kidding me? I was floored... I really never expected anyone who wasn't related to me to ever read what I was writing. But almost six years later, I'm totally honored and shocked that sharing our experiences with raising a child with Type One has brought some comfort to others going through the same things.

I wanted to do something special to say THANKS FOR READING!

Lauren's Hope was kind enough to come up with a very special contest just for my readers!

When that name is Lauren's Hope, it makes me think of beautiful, sturdy, fun jewelry!

As you know, we love Lauren's Hope! Sweets wears her medical alert bracelet from Lauren's Hope every day. More than that - she honestly never takes it off. She sleeps in it, showers in it, cheers and tumbles and dances in it... It's taken a beating for sure and it's held strong!

Picking out a bracelet was one of the first things we did together after she was diagnosed. It was a chance to do something fun - SHOP - because of this disease. At three years old, she didn't have control over anything, really. But she could pick out a bracelet! And that she did!

Wearing a medical alert bracelet isn't really a luxury for us. It's a necessity. When she was younger, I felt safer having her wear it because I knew she probably was too young to share that important medical information if it was needed. We also used it as way to make sure she always had our cell numbers on her just in case she got lost! Now that she's older, it's important for other reasons. I feel that it gives us some added security now that she's doing more things independently.

And like I said, it's a great way to add some FUN and STYLE to an otherwise ugly and tedious disease.

Lauren's Hope has designed a special bracelet... JUST FOR US!

Isn't it pretty? Beautiful blue beads for diabetes awareness!

Want to win it?!?

Here's what you need to do!

This beautiful bracelet needs a NAME!

So get your thinking caps on! Think outside of the box! Let your creativity flow!

Comment on this post with your ideas. You can come up with as many as you'd like so you can have lots of chances to win! Also, share this contest on your social media sites like Facebook, Twitter, Instagram, etc.

Sweets and I will pick our top five names. We will then turn that list over to the folks at Lauren's Hope. They get to have some input and make sure that there are no active or inactive bracelets with the same or similar names. Then we will pick the winner!

You have until Saturday, January 31 at midnight EST to submit your ideas!

We can't wait to see what you've got! And thanks again for reading!

PS- If you want to check out all their fab designs, click that banner over to the right!

Quiet Tears and Making It Look Easy

noreply@blogger.com (Hallie Addington) — Sat, 17 Jan 2015 02:46:00 +0000

We go along for awhile on cruise control.

This life is just our normal.

All the testing and counting. The sleepless nights. The site changes. The shots.

It's just our life.

It's our normal. And we don't really talk about our normal. We just do it.

And then I saw this pin on Pinterest. And it made me think.

It's been almost six years. No one really asks how she's doing very much anymore. No one EVER asks me how I'm doing.

Is it because after so many years, people think we've just got this?
Is it because people assume we're fine?
Is it because she LOOKS fine. Healthy. Happy. ?
Is it because I don't talk about it so much?
Is it because no one knows when I've been up five or six times a night and am working on about 2 hours of sleep?
Is it because people think she's ok now?
Is it because people think she's "controlled"?
Is it because people think diabetes doesn't affect her anymore? That she's used to it? That the needles don't hurt any more? That it's not dangerous?

Do we give the impression that this disease has become.... easy?

Because it's not.

It's still hard.

It can still kick my ass into next week hard.

There are times when it IS our normal and it's just what we do and it rolls off our backs.

It hasn't gotten easy. We've just gotten better.

One of my favorite quotes I found on Pinterest!

But we still don't sleep through the night. We still test at least once. We are rarely rested. (I'm not saying you have to test at night. I'm just saying we do. And we will. Because she NEVER has ever woken up from a low. She can't tell she's low when she's awake. She has been in the 20's low and you'd never know it based on her. But to each their own. That's how we roll and although we hate losing sleep we feel it's needed.) I'm used to functioning now on very little sleep. It's the trade off for keeping my child healthy and alive.

We bust our rumps every day to keep her in range. She is crazy active. It's who she is. She loves dancing and cheering and gymnastics. And to do what she loves requires A LOT of work on our parts. (In fact, as I type this while she's at dance, let me pause to check her Dex becasue she got a LOT of insulin earlier and who knows what's happening... Crap. She's 66. Hold on....)

There are so many factors that affect her blood sugar.

So. Many. Things.

Controlled? I don't know. Managed.

She rarely complains about finger pricks and site changes. But they bother her. They still do. You can see it in the slump of her shoulders when she realizes it's pod change night. It might be a split second. Because she know it has to be done. But she doesn't LIKE it.

She looks healthy. She IS healthy. And happy. But do you see the red circles under her eyes? Do you see the look... the not there look from lows? Do you see the headaches from being too high? Most don't see it. She hides it well.

Most people don't see how she hates having to miss class because she has to test. Or how she hates having to stop while dancing or cheering. How she hates being singled out. How she feels different from most of her friends. She seems so well adjusted. And she is. But it still sucks.

This is what we do. We test 10 times a day. Sometimes more. Sometimes less. We count every carb you can think of. We keep insulin in our fridge and have a medicine cabinet that's taller than me. The people at Walgreens know us by name. And sent us a Christmas card. We are used to blood. Needles. Worry. Frustration.

We are used to the tweaking. We are used to treating this disease largely on our own.

We are used to making life and death decisions every day.

We are used to the sleepless nights (Have I mentioned that already??)

We are used to the fear.

It's just what we do. It's our life. It's our normal.

But just because we may be more quiet than we used to be does not mean it's become easy.

We've just been so busy LIVING this life... And not just living it - but LOVING it... That somehow we've made it look.... easy.

Another Pinterest Fave...

What choice did we have?

If we spent all our time moaning and crying and complaining and throwing tantrums, we wouldn't be living.

So we've gotten on with it. At some point, we decided it was time to pull ourselves up by the bootsraps and get busy enjoying this life.

I kinda like Pinterest. I may have a problem. You should check out my Diabetes board.

That doesn't mean it's gotten easy. It doesn't meant that this disease doesn't still take my breath away and that it doesn't still bring me to my knees. It doesn't mean that at times the tears don't fall.

They do. It's just that they are now mostly quiet tears. And they don't keep me from seeing the beauty around me.

So maybe the fact that we make this look easy...

And that we make it easy for people to forget that it's a difficult, challenging, serious disease...

Maybe that's actually a compliment.

Because maybe it means that we're doing something right.

New Year - Same Old Diabetes

noreply@blogger.com (Hallie Addington) — Mon, 12 Jan 2015 03:08:00 +0000

It's a NEW YEAR!!!

There has been so much going on around here lately... Some of it brand new and some just slightly new!

Here's all the newish stuff we've been up to and the reasons that I've been MIA...

I have a new class of Kindergarteners! They are super sweet and I love them all. They keep me VERY busy! That's not new!

Sweets is still taking dance but she's at a new studio. She's learning new hip hop poses like a "baby freeze" and dancing her heart out. At this studio, parents are not allowed to sit in on the class. So, Sweets is being responsible for her own diabetes management during class. She keeps the Nightscout rig in her bag along with her kit and other Dexcom. We stay in the waiting room so we are there if she needs us but she is enjoying some new freedom and responsibility.

I have been keeping busy with some newish JDRF stuff. I spoke to one of our local Lions clubs about getting involved and fundraising for JDRF. That is something that I've done before. But the new part is that I also did an inservice at a local school district concerning handling type 1 in the classroom. This was totally new for me and I was honored to be asked! I had a great time and got to meet some wonderful new people!

What has REALLY been taking a lot of our time is CHEERLEADING! Sweets is cheering again this year. This year, however, she is cheering for basketball. And I'm the coach! Ummm... what was I thinking?!? I know - I was thinking I was going to be there anyway to monitor BG and since no one else stepped up.... I've helped out and been an assistant coach before but being the only coach is new to me! It's a lot of work! We practice for 2 hours twice a week and then have games on the weekends. Cheer makes Sweets drop like a rock. It's all the bouncing and jumping she does. She absolutely LOVES it and we are both having a great time!

We spent our Christmas holiday in Florida! This is not new to me. When I was about five years old, my family started spending our Christmas in Florida. Christmas to me is white sand beaches! We stopped doing this, however, when Sweets was born. When she found this out she was NOT happy! She loves Florida every bit as much as I do! This year we had a full week between Christmas and going back to school so we took advantage and headed south! It was great!

We also made some videos for our local JDRF chapter to thank people who supported JDRF last year. Sweets LOVED doing those videos! We personalized them for each person... and then we had to make one to thank all the wonderful people who supported our efforts to raise money for JDRF! You can check it out on The Princess and The Pump's Facebook page here! The Facebook page and Instagram are a great way to keep up to date with us. While I have trouble blogging regularly, I do post to FB and Instagram a lot! Like all D parents, my phone is glued to my hands!

Diabetes has been there through it all. It's been the reason for some of our new stuff. It's complicated some of our new stuff.

And it's just been a normal part of our lives like it always has been.

I'm excited to see all the new stuff 2015 has in store... hopefully some wonderful diabetes advancements that change our lives for the better!

And....

We have some new and exciting stuff planned for all of YOU, too! Stay tuned for an amazing giveaway with a very unique opportunity! You won't want to miss this!

Ornapods and Care Packages: Bringing Hope, Courage, and Strength to the Holiday Season

noreply@blogger.com (Hallie Addington) — Thu, 18 Dec 2014 04:52:00 +0000

With stomach bugs and flu running rampant just a few days before Christmas, many of us D Rents are living in fear that our kids will get sick and we will end up spending the holidays in the hospital.

That would really bring out my inner Grinch!

But you know what would be worse? Being diagnosed over the holidays.

That was something that I was thinking about last year at this time when I had the idea to make care packages for our local hospital. I just couldn't stop thinking about how overwhelming that would be. I mean, it's overwhelming and terrifying any time of year. Add being inpatient during the holidays... too much.

I wanted to do SOMETHING to make it a little bit better. So we put together a little bag of goodies and a note of encouragement that will hopefully bring a smile during a very difficult time.

We enjoyed doing that so much last year that we decided to do it again!

This year we put in notes of encouragement from Sweets and myself. We added a JDRF bracelet and candy cane (blue, of course) with carb count attached!

And we made Ornapods!

What are Ornapods, you ask?

Ornapods are ornaments made out of Sweet's insulin pump, the Omnipod.

Want to make some yourself? It's super easy... here's how!

1. Pull the adhesive backing off of the used pod.

2. Remove the unused insulin from the pod. You can use the syringe that you use to fill the pods or you can use just a regular syringe. Insert the syringe into the same place that you use to fill the pod. You can tilt it downward to get the maximum amount of insulin out.

3. Clean the pods with an alcohol wipe.

4. Paint the pods. I chose the cheapest paint I could find! You might want to look for one with a matte finish or one with shine. That's up to you! It may take a few coats of paint to get them to the desired color.

5. Seal the paint with Mod Podge. I picked out a sparkle kind this time. Who doesn't love glitter?!? This is optional. I just like the shiny look!

6. Use stickers to decorate the ornaments.

7. Use ribbon as a ornament hanger. Cut to the desired length and hot glue onto the back of the pod.

8. We used a silver paint pen to write the date on the back.

Sweets really enjoyed making these! She was able to help and do a lot of the work herself - although the painting can get a little messy! She enjoyed picking out the stickers and the paint colors and the ribbon!

We use these as gifts for teachers, family members.... and our school nurse!

It may seem a little odd to use your medical trash and turn it into an ornament... and hang it on your Christmas tree...

Sweets even said, "It's kinda funny this was on my tush and now it's on our tree!"

But when you really think about what it IS...

It's what kept my child alive for three days. It's what gave her the life sustaining medicine she needs.

That makes it a pretty powerful statement of HOPE and COURAGE and STRENGTH.

And I can't think of a better ornament...
Or a better way to show a newly diagnosed family that although living with T1 is a difficult, strange, new world... it's not all bad.

When You Walk The Walk: An Open Letter of Thanks

noreply@blogger.com (Hallie Addington) — Thu, 11 Dec 2014 03:12:00 +0000

Dear Friends and Family,

As you know, in October we participated in our sixth JDRF Walk to Cure diabetes. It's hard to believe we've done this six times!

We know that you may be really tired of getting a letter from us each year! Please know that we are honored by your generous donations. We know that there are numerous organizations where you could donate your money and we are honored that you chose JDRF.

It's hard for us to ask year after year for you to support JDRF and our families efforts. But as much as we hate asking for money, what we hate more is watching our daughter fight this disease 24 hours a day for over half of her life. It's hard to watch her battle this disease day in and day out and know that there is nothing we can do to take it away.

So we do whatever we can to work towards a cure.

The best way we know how is by raising money for JDRF.

This year our team raised a record breaking amount of money! With your help, we raised over $21, 700!

ARE YOU KIDDING ME?!?

This is the most we have ever raised... And to do that in year six when we know that each year raising funds gets harder and harder... It's incredible.

In our six short years, we have raised over $90,000 for JDRF.

UNBELIEVABLE

How can we even begin to tell you how much this means to us? To tell you how much this means to Sweets and her future?

I'll start with walk day...

Walk day to Sweets is almost like a birthday without presents. She looks forward to this day all year long. She loves helping design the t-shirts. She loves thinking up a new team name when the old one seems too babyish. She loves seeing her friends and family show up wearing her shirt to support her on walk day.

Did you know she eagerly looks forward to seeing each person there? You may not think she notices.. but she does. Her eyes light up with excitement each time she sees a new face arrive to walk with us. Your support means so much.

This year she was thrilled to be able to walk with her friends and enjoy a beautiful fall day.

She was SO EXCITED to find out she won the t-shirt contest!

She loved dancing and being silly celebrating... even with our canine team members!

Walk day isn't about the money. Walk day is celebrating our little warrior who fights this disease on a daily basis with no end in sight.

It's after the walk that our focus turns from celebration to motivation and progress.

We believe in JDRF. We believe that the research JDRF is funding is going to change the future for Sweets and her life with diabetes.

And not just one day. It's changing her life NOW.

The technology that is rapidly coming on to the market is making living with diabetes safer. I used to worry about how Sweets would ever be a normal kid and go away to college. Now... I'm so excited by things like the bionic pancreas and encapsulation that I know I have NO IDEA what life with diabetes is going to be like in ten years.

We truly believe the each dollar is making a difference. And so we thank you...

We thank you for making our girl feel so special.
We thank you for celebrating all her.
We thank you for honoring her and all she deals with.
We thank you for giving her the chance to live a long, healthy life.
We thank you for having hope that one day she can live WITHOUT type one.
We thank you for helping not just Sweets but ALL people with diabetes.

These words seem so inadequate.

Just know that from the bottom of our hearts, we are grateful for your generosity. You may feel like it's just a small amount or just a donation... but it's not. It's so much more than that.

It's love.
It's hope.
It's a brighter future for this girl we love so much.