Friday, November 30, 2012

Day 30 ~ CURE (#NDAMphotoaday)

...this one is a hard 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 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 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 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.  


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!!!)

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 now and one later! :)

We are always finding strips in random 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!!

Tuesday, November 13, 2012

Day 13 ~ Meter (#NDAMphotoaday)

Meters, meters everywhere!  But, we really only use a couple of them regularly.

1. PDM (personal diabetes manager) ~ controls Bean's pod 
(insulin pump) and has a built in FreeStyle meter...
and a LIGHT on the test strip port (LOVE)
2. Precision Xtra glucose and blood ketone meter ~ we use it for 
the ketone feature and occasionally for a 'double check' for a BG
3. FreeStyle Lite ~ backup meter if the PDM freaks out 
since it uses the same strips
4. One Touch Ultra ~ Bean's first meter, affectionately called 
the Gold Standard since we would judge every other meter by this one 
for the longest time and still pull it out every once in a while to double
check those "where the hell did that number come from" BGs
5. AccuCheck Aviva ~ never used; LOVE the MultiClix lancing 
device that came with it and Bean uses it exclusively now as it hurts 
WAY less than any other lancing device she's used
6. One Touch Mini ~ was sort of a back up for the Gold Standard, 
but we never got consistent readings, so it wasn't used very much at all
7. Nova Max ~ blood ketone meter; we weren't utterly impressed with 
it's accuracy, so we  moved on to the Precision Xtra.

Monday, November 12, 2012

Day 12 ~ Love (#NDAMphotoaday)

I honestly think 'insanity' might be a better description for this one, because trying to get all those dang sprinkles (how do you make 'nonpareils' plural?!?!) to be where they were supposed to be was nothing short of insane!!

But, I thought the idea was cool, so I went with it.  Don't like that the blue circle doesn't show it's blueness very well and try as I might, I could not get it to cooperate with me to adjust the color of the photo.

I did also contemplate counting the sprinkles in the heart to see if it was close to the number of finger pricks Bean has done, but there has to a line that you cross where love truly does turn into insanity and I think counting sprinkles is that line!

For the record, the drop marks are from me trying to delicately spray Static Guard on the paper around the sprinkles to keep them from attracting or repelling each other, depending on the location they needed to be.
Yep, treading really close to that line again.  But, I love my Bean, so there you have it!

I also thought about using this photo...
..because I absolutely love it, and it speaks volumes to the love Bean and Bug have for each other...not to mention the medical bracelet to just send you right over the edge!  Ubergeek thought I shouldn't use it because I've used it on the blog before, but I'm putting it up here again anyway! ;)

Sunday, November 11, 2012

Day 11 ~ Cupcake (#NDAMphotoaday)

Sure, I could go all literal and show you a picture of Bean eating a cupcake for today's photo because she CAN EAT CUPCAKES!!  But, since the girls and I were at Target and they just had to have a new shirt, there was no way I was passing up this little number for Bug.  (Bean's will be featured later in the month!)

Yes, go ahead and squish know you want to! ;)

Seriously, though, Bug is amazing.  Not just for who she is as a person, but for who she is as a sibling of a T1.  She knows where the juices and applesauces are if Bean is low.  She knows that if Wilma (Bean's CGM) buzzes, something needs to be done.  She mostly understands when she has to wait because there's something D related that has to be taken care of first....she is 4 after all and patience is NOT one of her strong points!  I know that she would fight to the death for her sister, even if sometimes she would probably like to severely harm her herself...that's sisters for you!  I treasure the friendship that I know they will have as they grow up and the lasting bond they will always share.

Saturday, November 10, 2012

Day 10 ~ Low Treatment (#NDAMphotoaday)

...thankfully this is a pile of low treatments that have accumulated over at least a month...but they are all due to nighttime lows and that's why I set my alarm each and every night to wake up in the wee hours to check her BG because she doesn't always (in fact most of the time she doesn't) wake up when she's low.

Friday, November 9, 2012

Day 9 ~ Blood (#NDAMphotoaday)

This picture brought to you today by the smears of extra blood after Bean has tested her blood sugar.  These smears represent her having to test every time she wants/needs to eat, before activities like recess, before taking a spelling test, and any other time she isn't feeling quite 'right' to see if she needs to treat a low blood sugar with fast acting carbs like a juice box or treat a high blood sugar by giving herself more insulin.

On a side note about the spelling test BG's in Bean's 504 plan that her blood sugar needs to be in range (80-180) for her to be able to take a test.  That way her brain is functioning at it's best and she's able to perform to the best of her abilities.  We give a little on the upper end of that because with breakfast spikes and after lunch numbers, there would be a small window of her day for tests to be taken, so we allow her to take tests in the very low 200s as well, if need be.
However, today, for her spelling test, she was at 284.  NOT an OK number for her to be taking a test.  Her brain is not getting the fuel it needs because the sugar is obviously hanging out in her blood.  Even after telling her teacher that she couldn't take the test, her teacher told her that she did have to and that her number was OK according to 'the plan.'  Try as she might, Bean could not convince her otherwise and took the test.
When she was telling me this after school, I turned the car around so we could 'fix it' because Bean felt like she was being ignored and wasn't telling the truth and was quite upset about it.  By her choosing, we went to talk with the teacher first and happened to run into the principal on the stairs on the way to the classroom.  I told him what we were there for, so he was aware of the situation.
We talked to her teacher, and she even questioned me being correct about what the 504 plan stated. (Um, really?!?)  She checked the copy she had in her room (don't know why she didn't do that when Bean was telling her she couldn't take the test) and apologized for her mistake.  She agreed that Bean could take the test over on Monday and Bean was happy with that outcome.  Bean was also very happy that we had taken the time to talk with her teacher about it and thanked me several times for doing it. (what else was I going to do?!?!)
On our way out of the school, I popped into the principal's office to let him know what had come of the conversation with the teacher.  I made it clear to him that my biggest problems were that the teacher didn't (a) believe Bean and (b) didn't take the 10 seconds to look at the 504 plan she had in her room to verify the information.
You see, Bean is your typical 8 year old who has had issues in the past with not always being truthful.  It's something we take very seriously, and have impressed upon her that honest is very important.  So, for her to feel that she was being perceived as not telling the truth about not being able to take the spelling test was quite hurtful.  And, there will be many times in the course of her education that she will have to go toe-to-toe with her teachers about D stuff (albeit respectfully, but still) and she has to feel that they will take her at her word when she tells them about a BG issue.

Just another day as a parent of a T1D kid...blood and all! :)

Thursday, November 8, 2012

Day 8 ~ Sparkle (#NDAMphotoaday)

who says your blue circle can't sparkle!?! 

visit CCaria on esty for this and lots of other awesome blue circle jewelry