The Night Before Christmas - Diabetes Style

Friday, December 25, 2015

Merry Christmas!

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

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

And from our family to yours, Merry Christmas!



The Night Before Christmas - Diabetes Style

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

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

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

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

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

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

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

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

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

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

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




Laughing All The Way

Sunday, December 20, 2015

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

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

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

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



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

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

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

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

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

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

 

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Keep Laughing, Friends!

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

Wednesday, August 12, 2015

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

SUPPLY BAGS!

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

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

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

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



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

Here's the inside...




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

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

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



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









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


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

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

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

What do YOU use!  What do YOU love?!?

Back to School With T1D

Sunday, August 9, 2015


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



Before the Year Begins…

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



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

Tips for a Successful Meeting…


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


Things you will want to discuss with the teacher:

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

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

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

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

Things you will want to discuss with the nurse:

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

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

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


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

The 504 Plan

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

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

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



Accommodations you may want to include:

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


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

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

Other Considerations:


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

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

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

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

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