Thursday, December 13, 2012

12 of 12 ~ December

...or should I say, 12 of 12 on 12/12/12!

And the day begins with a midnight-ish BG check.
Looks like that nice bedtime number decided it was too low. ;)
Nothing a little insulin can't handle...or at least that's the hope!


I had set an alarm on my phone for 3am to see how the correction was 
going, but, Bean, because of the high BG, overflowed her pull-up, 
and woke me up to help her get her bed back in sleeping order.
Well, at least now there's a bit more time in between a BG check
and when I have to get up...


This is how I found Bug when I went in to wake up the girls...
one arm out of her PJs, not on her pillow, and mostly uncovered!
Such a silly thing, even when she's sleeping!


When living in a house with two girls, there is never a shortage
 of cute bandaides to choose from if you happen to get a
boo-boo...real or not so real.  Mine happens to be real,
though I'm not sure how I cut the side of my finger!
A Candyland bandaide will help it feel better, I'm sure!


Seems we are making up for lost time with today's snowfall.
Nope, not foggy...that's snow falling in large quantities!
Was kinda bummed the picture didn't capture any of the actual falling 
snow, but that's par for the course with my cell phone camera!
Yes, I'm happy we are getting snow...it's so pretty...
but, the shoveling I'm not so happy about!


Today wouldn't be complete without a BG check at 12:12!!
And since I missed the AM opportunity by 19 minutes, I HAD
to make the PM one!  Thankfully the class I was subbing in
went to recess in time for me to boogie to Bean's class to have
her test! (For the record, she thought I was crazy waiting for 
her PDM clock to read 12:12!!)


...that's a LOT of 12's!!
Thanks, Ubergeek, for the cool picture!


So, the class I was subbing in today has been learning about 
ordered pairs. Being the nice sub I am, I printed out some fun 
graphing activities for them to do, thinking it would be more 
enjoyable than just plotting points.  Well, several of them thought it 
would be OK to just try to guess the pictures and draw them 
instead of actually finding the ordered pairs on the graph. 
Rude...and totally not the point of the assignment!
And, yes, I totally said that to them...this is a class I'm in often
and have that kind of relationship with them, which I love.
This one is my example....yes, I love to color! :)


What else is there to do in all that new snow but make
a SNOW ANGEL!?!  Bean had fun making several
while she was waiting for me to be done with my subbing day.
This one was 'headless' because she did it on her tummy!


When we headed down our street, the guys that plow the 
driveways had just started, so we turned around and headed
to Subway for dinner.  Nice way to waste some time and have 
someone else be in charge of dinner! Unfortunately it didn't work 
as well as we wanted because they did the street first and
 hadn't even started on the driveways when we got home.  
But, there was homework to be done and bedtimes to be kept, 
so we just pulled in and trudged through the snow to the front door.
Oh, and then I went out and shoveled the sidewalk 
and part of the driveway.
Fun.


Subway was, according to Bean, was sporting
Diabetes Blue for their decorations!


It wouldn't be a day in our house if a load of laundry wasn't shuffled!
This load was put into the dryer as I was going up to bed.
Funny how me going to bed almost always entails laundry or dishes!

Monday, December 10, 2012

Bracelet Variety Is The Spice Of D-Life

Like most girls, Bean is fond of changing her outfit a bazillion times a day.

Thankfully, this usually only happens on the weekends, so it's tolerable!

She also likes to change up things in the medical ID bracelet wardrobe area, too.

She has several options from Lauren's Hope, including one she's had since very shortly after dx that has stood the test of time.

Recently, our beloved TallyGear (who makes amazing things for carrying pumps and CGM receivers, etc) ventured into the ID bracelet world and I was super excited to check them out.

Before I even had a chance to peruse the options on the website, I got a message to see if I thought the girls would like to have one.  

Um, duh, yes, of course!!

Very soon after, Bean was dancing around the house, kissing her new bracelet, proclaiming how much she loved it!!


It's great for those everyday, casual, but still super stylish and girly, needs.  I love that it's totally adjustable...which is important for Bean's teeny tiny wrist...and that the medical information is easy to get to.

For all the specs, check out this part of the TallyGear website.


What's totally cool, is that you can get just an ID bracelet for kids without any medical alert needs.  This was a BIG hit for Bug, since she's usually left out of the 'cool products' area because there just isn't a need.
It has the same pull out info tag, but the part you can see on the bracelet doesn't have "Medical" on it, nor the caduceus. 
Bug LOVED being able to show off her new bracelet along with Bean when we headed out to dinner with the grandparents this weekend.


Yes, the bracelets were given to the girls free of charge.

But, more importantly (I think, anyway), I will TOTALLY be buying other styles because they are cute and very reasonably priced!

Besides, Bean has to wear a medical ID everyday to make sure she's always safe, so why not give her as many options as possible.

A girl has to have her options!!

:)

Wednesday, December 5, 2012

Hope, Comfort, and "Same" in Numbers

On the first Tuesday of each month there is a Diabetes Support Group that Ubergeek and I have started going to.

The first meeting we attended had four other moms.  The second, it was just me and another mom.  Last night there were five other moms and a dad, plus Ubergeek and I.  Plus, there were only two of those five that were at the other meeting.

Last night's meeting was particularly...um...ugh!  Can't find the right word.
Heavy, powerful, enlightening, emotional....that starts to scratch the surface just a bit!

Anyway!  There was a newly dx'd family there last night; three months of being in this battle pretty much all alone.  There were a handful of us with 2-4 of years under our belts and two with around 9 years.

It was powerful to sit around the table and just share what works, what doesn't work, and the unending "1 + 1 = purple" frustration that comes with this disease.

You could see the weight of this life changing diagnosis lift ever so slightly from the shoulders of not just the most recently dx'd, but from those of us who have worked D into the regular routine of our lives, being in a room of people who truly understand what the daily grind requires.

Being able to bounce information off of each other, share successes and failures, talk about technology, compare notes on post exercise lows, and what low treatments our kids prefer,(just to mention a few things we crammed into just over an hour) is such a wonderful thing.

I don't like meeting other families with kids that have T1D because I wouldn't wish this life on anyone!

But, I love meeting other families with kids that have T1D because connecting and sharing are second only to insulin and test strips when it comes to life with T1D, as far as I'm concerned!

Sunday, December 2, 2012

Tears of, well, Jealousy

Jealousy.

That has to be what it is.

Why the tears came when I was talking with Bean's FNP yesterday at our 3-month check up.

Why the tears came when I read a friend's FB status about being able to go on a date with her husband and have someone watch their kids and have the oldest ones stay for a sleep over.


You see, I'm struggling lately with the whole 'how Bean is treated because she has T1D' thing.

It's not like she's being singled out or bullied or anything like that.  She's just seen a 'different' because, well, she is.

But the part that makes those tears become mixed with a bit of anger is that it is NOT HER FAULT she's different.

She's the only one who has to test her blood sugar when she 'gets in trouble' at school for being overly silly or is having trouble focusing.  All the other kids just get a reminder or move their clip or whatever else happens to kids whose pancreases work.

She's the only one who has to help her teachers remember that sometimes she can't do certain things (like take a test or participate in PE) because of a number on a screen.

She's the only one in our group of friends who takes a significant amount of extra planning to go to play dates or a sleep over...which hasn't happened yet, just in case you're wondering. (To be fair, she has been asked, but it's never been an actual planned out invite, just the off-handed 'so and so said I could sleep over sometime' or 'we should figure out something for the girls to do' but it hasn't amounted to anything.)

Ubergeek and I can't just drop the girls off with anyone to go out.  Yes, his parents are great with them and they get the whole D thing, but it doesn't always work out for them to watch the girls.  And, yes, there is a babysitter who has T1 that we trust completely, but she's not free. ;)  And when you are looking at the cost of a night out, plus babysitting, it just doesn't always fit into the budget.


It's frustrating.  Frustrating to the point of tears at the moment.

Yes, I know, this will pass.  The tears will stop.  I'll have a better perspective on things and they won't bother me as much.

But today, well, today is not that day.

Friday, November 30, 2012

Day 30 ~ CURE (#NDAMphotoaday)


...this one is a hard one...how do you take a picture of the deepest desire of your heart? how do you take a picture of the best thing you could ever give your child? how do you take a picture of something that doesn't exist?

Then I got to thinking, and it came to me....


...if there was a CURE for T1, then the carb counts on the nutrition labels would loose their immense power!  

I wouldn't have to know that there are 16g carbs in 8oz of tomato soup; 9g carbs in 60g by weight of spaghetti sauce; 17g carbs in 1 chocolate chip granola bar; 15g carbs in sqeeze applesauce to bring up a low BG in the 60s or 70s; 26g carbs for 53g by weight of Cheetos.  (Oh, and for the record, I only had to check on the weight of the Cheetos bag, thank you very much!)

We wouldn't have to add up carb counts to dose insulin whenever Bean eats because if there was a CURE, her pancreas would go back to doing it's job!  

No more finger pricks, no more pod changes, no more CGM sensors, no more thinking about IOB at bedtime, no more 2am alarms!!!  

Yeah, I'd totally be OK with going back to not caring about carb counts.  Totally OK with that.

Thursday, November 29, 2012

Day 29 ~ Advocate (#NDAMphotoaday)


Such a large part of advocacy is education.  As people who live with T1D 24/7/365, we are constantly educating on some level or another.  Whether we are education ourselves to be a better pancreas, educating our child(ren) to do self-D care, educating family members about the general idea of the disease or the more subtle nuances of it, educating the general populous as they bombard us with insane ideas or stupid questions, etc.  It's a never ending process, this educating part of advocacy.

Each year, we do a presentation for Bean's class to educate them and help them understand what Bean has to do and wear in order to keep her safe, healthy, and alive.  It's nice that she goes to a relatively small school and that there's a decent percentage of her class that has been in class with her before.  So, it's not like we're going in to a room full of kids that have no idea what we're talking about.  And it makes it way easier and more comfortable for Bean.

This year, we switched it up a bit and used the new Lilly/Disney book about Coco going to school with her diabetes.  We also got the hook up from Insulet and had some silicon bracelets to hand out...which the kids loved!  (Thanks, again, Insulet!!)

Here's my supply bag, complete with a pancreas from I Heart Guts.


What's cool is there are a few kids that have been in class with Bean for the past two years, so they are 'old pros' when it comes to the whole diabetes thing.  They are past the basics and when it comes to question time, they ask some really well thought out questions about some of the more intricate things that D can bring.

What I also like is that it gives the teacher another dose of information, too.  You can't ever repeat somethings too many times and when it comes to T1D, some things have to be repeated again and again for it to really sink in.


Wednesday, November 28, 2012

Day 28 ~ Stockpile (#NDAMphotoaday)


I have to admit, we aren't big stockpilers.  Yes, we have everything we need on hand, but there aren't a lot of extras of most things.  I've become better at filling prescriptions as soon as they can be filled instead of waiting until they need to be filled so there's some wiggle room with things like strips...which has been a fabulous thing on those days when we seem to need to test a LOT.  I am thankful that we have what we need to keep Bean alive!  Sure, it would be nice to have a good amount of backups for everything, but as long as we get by each month, I'm OK with my shelf of D stuff that took the place of crystal serving dishes that were just collecting dust and trying to look pretty!



For the record, I recently ordered the GoGo Squeez applesauce from amazon.com because our WalMart (who carries the twelve pack at a nice price versus the four packs everywhere else at a not so nice price) was almost always out when I needed to get more...frustrating!!
For us, the case of 48 was less expensive than the same quantity I could get locally and with my prime membership, the shipping was free.  
Granted, I did pay for faster shipping this time because we were down to three pouches and we NEEDED them.  They still ended up being only a few cents more per pouch than the same amount...which I couldn't get because they were out...at the WalMart in town.
Just in case you were wondering.....ha ha, case...see what I did there?!  
(Sorry, not a lot of sleep last night, even for a D-mom!!)


sorry the text on the picture is so small...it was actually in a nice sized font when I made it, but the format it will let me use on the old blogeroony makes it not so nice sized.  technically, I could make it bigger, but then it would not fit within the pretty little lines and that just wouldn't do.  ah, the issues of a type A personality!


Tuesday, November 27, 2012

Day 27 ~ Shoes (#NDAMphotoaday)


After a long, half day with fifth graders (who happen to be the fourth graders I taught last year!) it's time for some 'put your feet up' time. :)


I think some blue shoes need to be on Bean's Christmas list... :)

Monday, November 26, 2012

Day 26 ~ Eyes (#NDAMphotoaday)



This is one of my favorite pictures of Bean. 

She took it of herself two summers ago when she went to Camp K, the ADA's summer camp.

She has this look in her eyes that just gets me every time I look at it.


When Bean was born, her eyes were this amazingly dark, midnight blue.  Then then went kinda hazel-grey and then eventually to the beautiful shade of brown that they are now.  

They speak volumes, when she doesn't say a word.

They are full of this sparkle that says, "watch out world, I'm HERE and I'm not going anywhere!"

They are full of compassion that is well beyond her years.

They are full of acceptance and are always looking for the good in people.

They are full of hope and love.

They are full of determination that is not easily deterred.

They are full of spunk and silliness and sassiness, too.

They will, one day, I hope and pray, see the CURE for T1D and will shine with tears of joy.


Sunday, November 25, 2012

Day 25 ~ Exercise (#NDAMphotoaday)



Day 24 ~ Unicorn (#NDAMphotoaday)

dang it...I'm 30 minutes late!  but with good reason...we had a great cookie baking time with friends that went late into the night.  so, being late on today's, well yesterday's photo was worth it.




Bean was surprised when I told her that she totally needed the unicorn shirt from Target a couple of weeks ago because it was a diabetes thing.  I tried to explain that it was a sort of mascot...and then had to explain mascot...and then, she of course, totally had to have the shirt! :)

She was rather bummed that she had to wait sooo looong for it to be 'unicorn day' for the photo of the day! :)





Friday, November 23, 2012

Day 23 ~ Carbs (#NDAMphotoaday)


Our lives revolve around carbs.  That is the bit of nutritional information that we have to have in order to accurately dose the correct amount of insulin so Bean's body can process her food and have her body get the fuel it needs to survive.

Sure, after awhile, you get familiar with carb counts and quantities of foods that are consumed on a regular basis and have an arsenal of information to draw from so you can SWAG carb counts instead of weighing every bite that is to be consumed.


The month after Bean was dx'd, we were scheduled to go on a camping trip with a group of friends from her school.  We were new.  We were on shots.  We were determined NOT to let T1D get in the way of a fun new experience for our family.

So, I grabbed the calculator and started packing up food for our two nights away.


Over two years later, those masking tape labels are still on their respective containers.  One for Wheat Thins and one for Goldfish.  I know these numbers by heart.  I know that when I give Bean Wheat Thins, it's 14g carbs for 10 crackers.  It's not something I even think about anymore.  She doesn't do a lot of Goldfish anymore; probably because they are the 'booster' for her before recess if her BG is under 140, so snacking on them isn't that desirable)  But, that label stays because, well,  I'm not taking it off.


Wednesday, November 21, 2012

Day 21 ~ Hate (#NDAMphotoaday)


There are lots of things I hate about Diabetes.  I could probably bore you for days listing all the things that I hate about what T1D has done to our family, our finances, our socializing abilities, our daughters (the one with and the one 'without' D), etc.

Sure, there are days when D slips from the forefront of everything.  Days when it 'behaves' and we just go through the motions that have become a part of our regular routine.

But, then there are days that D decides it needs attention; full on spotlight attention.  Days when Bean's BGs don't seem to make sense.  Days when the highs won't come down or the lows struggle to rise.  Days when, for whatever reason, nothing works like it's 'supposed' to, no matter what tried and true methods we enlist.

Recently, like the past few days, Bean has been complaining about her tummy hurting.  Like 4am crying because of her tummy. Staying home from school because of her tummy.  And, tonight, missing out on family pre-Thanksgiving festivities at the grandparents' because of her tummy.

Instead of sitting at the table enjoying the yumminess set before us, Bean was curled up on the couch in pain and in tears.


Her BG was 296.  We've noticed that the tummy aches seem to accompany higher BGs.  
However, I'm also starting to wonder if other things are starting to brew.  Other issues that tend to go hand in hand with T1D, like Celiac.  

Ugh!  

Like she needs one more flipping thing to deal with on top of everything else.  I'm pretty sure I had the conversation with God on the day she was dx'd that T1D was the third thing and that was ENOUGH.  Bad things are supposed to happen in threes, right, and then be done!  

Well, Bean should get to be done, then:  
1~cleft lip (with two surgeries to date and others in the future); 
2~vesicoureteral reflux (with three surgeries that still haven't 'fixed' it)
3~type one diabetes (over 9000 finger pokes to test her BG an average of 10 times a day, not to mention shots and pod changes and CGM sensor changes and, and, and, and!!!)
THAT IS ENOUGH!

Yep, hate is a strong word and right now it isn't strong enough to express how I'm feeling about what my sweet Bean has and is going through and might have to face in the future.


Tuesday, November 20, 2012

Day 20 ~ Friends (#NDAMphotoaday)


...and there are many other friends, I just don't have pictures of them because we've never met IRL, but they are none-the-less wonderful friends!!


Monday, November 19, 2012

Day 19 ~ Strips (#NDAMphotoaday)


Bean has a Bio Flip from Stick Me Designs in her PDM (omnipod insulin pump controller) kit.  It's a handy-dandy little place for her to put her used strips after she's tested her BG so they don't end up all over the place.  At least that's the theory!  ;)

Here's what about a week's worth of strips that actually made it into the Bio Flip looks like...




...that doesn't include any night BG tests, because here's where those end up...


...on the top of the upside down toy box (don't ask).


Sunday, November 18, 2012

Day 18 ~ Bolus Worthy (#NDAMphotoaday)


Something that doesn't happen often in our house...pancakes with syrup.  Bean was super excited and deemed them 'way bolus worthy' with the first bite!


Day 17 ~ Random (#NDAMphotoaday)

...yesterday got away from me and I totally missed posting 'random'
so today you'll get two posts...one now and one later! :)


We are always finding strips in random places...now we are also finding Bean's lunch carb counts here and there, too!


Friday, November 16, 2012

Day 16 ~ Blue (#NDAMphotoaday)



This blue glow is my nighttime companion.


It sits on my nightstand, flickering and transmitting sound.

Sounds from my sleeping T1D kiddo's room, who is way too old to still have a 'baby monitor.'

Wilma (her CGM) rests directly on top of the transmitter in Bean's room so there's no possible way the sound of her vibrations or beeps can go undetected.

This blue glow and the sounds it transmits are my life line to Bean in the wee hours of the night.  Sure, I set alarms on my phone to wake me to check her blood sugar, but there are nights that I (a) don't seem to hear them, (b) go back to sleep the second I swipe the screen instead of getting out of the bed, or (c) totally forget to set them in the first place.

Thankfully, I never rarely seem to sleep through the buzzes and beeps that come through my blue friend.  And those buzzes and beeps tell me Bean is below 80 so I can catch a low BG before it gets too low or above 260 so I can catch a high BG before it gets to high...or at least that's the theory.  It's not a fool proof plan.  There are times when that 'below 80' turns into a 'below 55,' but that series of beeps and buzzes always seems to break through my slumber and get me moving down the hall pretty dang quickly.

This blue glow helps me rest a bit more easily and helps keep Bean a bit safer through the night.
And for those two reasons I will be turning on that blue glow each and every night.

Thursday, November 15, 2012

Day 15 ~ DiaFail (#NDAMphotoaday)


There were lots of examples floating around in my mind for today's photo.  In fact, just last night, there were two great examples that I didn't take a picture of.....of course!

So, in mulling over whether or not to 'make up' a photo by inserting the numbers I wanted, I remembered this little frustrating episode....



Ubergeek went in to test Bean one night shortly after midnight.  
He tested her once and got 233. Well, the CGM said something not even close to that, so he decided to test again just to make sure.  Something we do, especially at night when the stakes seem to be much higher.  
Now, her BG was supposedly 141.  That was a bit closer to the CGM's reading, but way different than the first strip's results.
So he tests Bean for the third time...and by this point Bean is not very happy with Daddy!  
Beep.....beep, beep goes the PDM and 90 shows up.  What the fructose?!?!

Frustrated with the 143 point difference in the readings, he comes back into our bedroom and asks me to go test her.

My first reading is 128.  Well, that's pretty close to the 141, and within the 20% margin of error that the strip manufacturers allow; just barely.
My second reading is 189.  Um.....yeah.  Not sure what to think.

At this point, according to five different test strips, with five different samples of blood, Bean could be anywhere in between 90 and 233.  What in the world are we supposed to do with a range like that?!?!

Well, we did nothing.  Didn't correct based on the 233.  Didn't treat a possible low based on the 90.  
We just sat tight and waited.  

And, as you can see, within the next hour and a half, Bean crashed to a lovely 39!  Thankfully it was an 'easy low' that came up quickly and stayed up for the rest of the night and landed at a lovely 112 for breakfast.

So, maybe the 90 was right?  
BUT, if I had trusted the 233 and corrected her?!?!?  I hate to even think how long it would have taken to get her back up from who knows how low she would have gone, plus having insulin still on board. YIKES!


This DIAFAIL is brought to you by stupid strips.  We NEED better accuracy.  Yeah, I know, most of them are accurate.  BUT, this night, I had no idea which one was accurate, or even 'close enough' to trust.

And that folks is not OK.


Wednesday, November 14, 2012

Day 14 ~ Today (#NDAMphotoaday)


Today, November 14th, is World Diabetes Day.  It's Sir Frederick Banting's birthday.  In case you aren't familiar with him, he's the guy who discovered insulin, the clear liquid that keeps Bean alive.

To support all those living with diabetes, we wear blue on this day.

So Bean would feel some of that support outside of our house, I sent home notes with her classmates on Monday explaining WDD and asking them to wear blue for her.

Here is what her circle of support looked like for her today:


Yeah, I kinda got teary eyed when I walked into her room and saw that all of the kids (with one exception, but at least he had blue on his coat for the picture) had worn blue shirts to show their support for Bean.

At the end of school, Bean handed out these treats....with the exception of the cookie, which they ate with their lunches.



Here's what the Sweet Bean Family wore today to show our support for all of our friends and friends' kids who live 24/7/365 with this crazy disease!



You can't possibly have a diabetes related celebration without these, which were made on the spot just for Bean at the grocery store after school.  She was beyond giddy that the bakery lady would do that for her.



Oh, and because she had been complaining about being thirsty all night, Bug had a BG check.


Nothing wrong with that number!!   Pay no attention to the date...this is the spare meter that doesn't get a lot of attention. :)

I feel blessed on this day to know so many amazing PWDs and CWDs and families.  It's a group of people, but for a hideous disease, I wouldn't have known.  However, I can't imagine my life without them.
I hope to be able to meet even more IRL, but even if I never get that chance, I know that in my computer live some wonderfully awesome people that I can lean on, and in turn offer my shoulder for support.

Happy World Diabetes Day!!