Thursday, May 31, 2012

Every Once In A While

...the planets are aligned, the wind is blowing in the correct direction, and Wilma and the PDM actually AGREE on Bean's BG!!

L.O.V.E it when that happens!!!  

Tuesday, May 29, 2012

Time For A Swim...Lesson

Since our summer plans will have us staying at a place that boasts a million gallons of water

picture from the Orlando World Center Marriott where FFL is being held

and a pool in my mother's neighborhood, we felt it was time for the girls to have some swim lessons.

They did great for their first lesson.  Sure, Bean has been in a pool before, but hasn't ever had any real lessons to know how to do more than splash around.  Bug, however hasn't been in anything but a bathtub.  And it was actually a big deal for Bug because she H A T E S having water in her face and washing her hair usually results in screaming.

They are both looking forward to tomorrow!

Sunday, May 27, 2012

My D Blog Week ~ #7 ~ Hero, By Definition

The word 'hero' can be defined many ways. 

In fact, Merriam Webster has seven definitions for the word.  

They are:
"a mythological or legendary figure often of divine descent endowed with great strength or ability"

"an illustrious warrior"

"a man admired for his achievements and noble qualities"

"one who shows great courage"

"the principal male character in a literary or dramatic work"

"the central figure in an event, period, or movement"

"an object of extreme admiration and devotion"

Now, I think any parent of a kid with D could arguably say that their kid is a hero.  And I would totally agree.  Our kids are amazing.

They are totally endowed with great strength.  Anyone who has had to wrestle a little one (or not so little one) to give them a shot could attest to that.  But there's also that inner strength that they have.  Strength to put up with the looks and the questions and the BG testing and all that other stuff that never stops with D.  It takes a lot of strength to face that each and every day.

They are without a doubt illustrious warriors in the daily fight with a disease that doesn't play by the rules.

They are surely admired for their achievements.  Have you ever been amazed at what our kids can do when their numbers are all wonky and there's really no choice but to just DO whatever it is that has to be done?  The fact that they deal with D day in and day out is worthy of admiration.
Now the noble quality part of it totally depends on the day...some days D just sucks and there's no 'noble' way of dealing with it. :)

Showing great courage?  Pu-Leez!  Kids who deal with a chronic illness (even when they look perfectly healthy) are beyond courageous in my book.  Sure, they do what has to be done to keep themselves alive, but finger pokes and shots and site changes and pod changes and sensor insertions take a TON of courage!

I don't know about your kids (well, I do know about them, but whatever!), but my Bean is most certainly part of a dramatic work.  Drama, drama, drama!!  Sure, some of it's just being an eight year old girl, but when you add that layer of D into the mix, well, the drama can get way out of hand sometimes.  Low BGs bring over reactions, high BGs bring over reactions.  You just can't win for losing sometimes!

Our kids are front and center in the movement of raising money for a cure, educating the masses, and advocating for understanding.  They are why we do what we do.  Why we write letters and emails.  Why we have bake sales or garage sales or whatever sales.  Why we meet with 'the powers that be' to have the big bucks spent on research to improve technology and ultimately find a cure.  Why we join together for events. Without the faces, the movement wouldn't move forward.  Our kids make D real to those who might otherwise not pay attention.

And like every parent, our kids are certainly the object of our extreme admiration and devotion.  We see what they live with and can't help but be impressed.  We make sure their carbs are counted and boluses are calculated.  We are up in the wee hours of the morning to check BGs to make sure they are safe until morning.  Having a kid with D takes the devotion thing up a notch.

So, is Bean my hero?  You bet she is.  

But so are your kiddos and those 'no-longer-kiddos' with D and you amazing D-Moms and D-Dads.  

I am honored to be among some amazing heroes!!

Saturday, May 26, 2012

My D Blog Week ~ #6 ~ Bean's Day

Today we spent the day hanging out with friends.  It was a 'spend all day outside' kind of day and thankfully the sun joined us and the wind was fashionably very late.  Here is how some of the day went...

check to make sure all needed items 
are in the 'kit' before leaving the house

start up BGs needed for dexcom CGM  
as soon as we got there
(not a bad number since she had toast for breakfast
and that can send her through the roof.
guess starting at 70 and a cranking basal worked today!)

time for a juice to treat a sneaky 63.
also reduced her basal to half of what is usually is
since playing all day was on the schedule

time to test for birthday cake.
only dosed for about half since I knew she wouldn't 
eat all of it, and to prevent a possible low

"how're you doing?"
asked about a hundred times

quick Wilma check before we headed home

time for a 'real' number before bed

wish all our days could look like this!!!

Friday, May 25, 2012

My D Blog Week ~ #5 ~ Well, Actually...

"Oh, wow, that pump has gotten so much smaller."
     **Well, actually, that's her CGM.  It monitors her blood sugar.  Her pump is still the same size as it's always been.**

"It must be so nice for her not to have to poke her finger to check her blood sugar now that she has the CGM."
     **Well, actually, she still has to test her blood sugar by poking her finger about ten times a day.  The CGM actually tests interstitial fluid glucose and although it's pretty spot on most of the time, it doesn't take the place of a 'real' blood sugar.**

"Now that she's had diabetes for so long, you must have her blood sugar under control by now."
     **Well, actually, there are a lot of unknown factors that can't be accounted for that can send her blood sugar low or high without warning.  Growth spurts, stress, excitement, sickness, which way the wind is blowing (OK, not really, but it sure seems that way sometimes!!).  We're doing better keeping her numbers closer to her range, but there are still days that we just can't seem to figure out what the hell is going on.**

"Now that she's had diabetes for so long, you must be able to sleep through the night instead of having to check her overnight."
     **Well, actually, I still check her at least once in the middle of the night to make sure she's not going too high or too low.  How many times depends on what her bedtime number was, if the correction is working or not, if her activity level during the day is affecting her, etc.  It's worth keeping her alive for me not to have a full night's sleep.**  (yes, I've actually gotten to the point where my answer about night checks includes the fact that it could, indeed, SAVE HER LIFE.)

"Oh, she must have Juvenal Diabetes since she's a child.  That's nice, since she'll grow out of it."
     **Well, actually, it's call Type 1 Diabetes now because not only children can be diagnosed with it AND since it's an autoimmune disease that has killed part of her pancreas, she'll never out grow it."

"She's been running high all morning?  Oh, my, I thought she was getting better.  What are you going to do?"
     **Well, actually, there's lots of reasons she could be running high.  Some days are better than others.  I'm going to do what I always do...correct her, change her pod if need be, and have her drink lots of water.**

Just a few of the random 'they don't know because they don't live it' questions and comments I've gotten in the past almost two years.  Ah, good times!

Thursday, May 24, 2012

My D Blog Week ~ #4 ~ In My Dreams

In my D dreams, there would be a device that would make the 'extra' blood from a finger poke magically go away once the amount the strip needs is sucked up.  Bean has this obsession with wiping that blood anywhere but on a tissue, especially when that tissue is not presented to her by me when she's testing.  There are blood smears on pants, shirts, socks, on the strap that holds her poker in her D bag.  You name it, there's probably Bean's blood on it!

Now if we are going to get CrAzY, I'd love a device that would monitor blood sugar and appropriately dose the correct amount of basal or bolus insulin all day, every day....Oh, Wait...That's called a PANCREAS!!!  Silly me!  Yeah, one of those, that WORKS, for Bean would be fab!!  


Wednesday, May 23, 2012

My D Blog Week ~ #3 ~ Time To Get To Work

I think the biggest thing that Bean needs to work on is responding to Wilma, her dexcom CGM.

Yeah, not a huge deal in the D scheme of things, but there are times that if she would respond to that buzz, buzz or buzz, buzz, buzz, she wouldn't sky rocket or plunge into the proverbial toilet.

See, we have her alerts set to tell her when she's going above 260 and below 80.  She's pretty good a pushing the "OK" button to acknowledge buzzing (there are times she totally ignores it until we either prompt her to push it or we just push it ourselves).  But, she doesn't always, or rarely it seems, look at the display to see if she needs to do anything.

It's one thing for her to ignore the 260 alert after a meal if she's started in the upper part of her range or even in the low 200s.  Not a big deal.

But, it's totally another thing for her to just push the button when Wilma lets her know she's dipping below 80.  Sure, Wilma isn't always spot on, but she's generally close to right more than she's not.  So, ignoring an alert that her blood sugar is dropping can put her well into the 50s before she 'feels low' and tests.

Getting Bean to pay attention to one more thing about D, especially during school, can be a challenge.  But, now that it's summer, we're going to be working on paying attention to Wilma so that by the time school starts up in August, it will be second nature...hopefully!!

Tuesday, May 22, 2012

My D-Blog Week ~ #2 ~ Kicking D Butt, Baby

Bean kicks D's butt in so many ways.

She tests her blood sugar with little to no complaining ~ she is 8, so a little complaining is totally allowed!

She knows the carb count on tons of foods and can bolus lightning fast!

She doesn't scream too much with pod changes ~ that tummy is sensitive!

She barely bats an eye at dexcom sensor changes ~ I think the fact that I'm the one pushing in the needle makes it better than the automatic-ness of the pod insertion.

Me, well, I do my fair share of D-butt kickin', too.

I make sure Bean's kit is stocked and ready to go.

I keep all of the various D supplies organized and refill prescriptions regularly.

I can calculate a carb factor lickity split....and add carbs together for meals dang fast, too!

I can change an alarming pod at school and get Bean to her pull out within five minutes.

I haven't slept through the night in almost two years and can usually function without a nap! ;)

On a side note, Bean got her braces today!  It's phase one of who knows how many phases to get her teeth where they are supposed to be.  Who knew that her having such a small cleft would create more issues.  She's doing well...pumping the Ibuprofen and eating pudding and yogurt! ;)  

Monday, May 21, 2012

My D-Blog Week ~ #1 ~ Find A Friend

So, here's my Day One for Diabetes Blog Week.  My Do Over officially starts today! :)

Let me start off by saying that I am so very thankful for the DOC!

I have 'met' so many friends that live in my computer and have even had the pleasure of an IRL meet up with one fab D-Mom.

I am looking forward to getting to meet more of those bloggy D-Folks at FFL and at other opportune times in the future.

But, today is about introducing you to a friend you might not know.  A friend who, like all of us, is now living with D.  She counts carbs, doses insulin, does night checks, worries about her boy's new challenges, AND she's a fellow Alaskan!!

Meet Becky of Pancreas FAIL!!  Her son, Seth, was recently diagnosed and they have already faced the challenges of traveling with D AND have started pumping!  I love her no nonsense style of writing.  I'm also looking forward to meeting up with her when she comes to the 'big city' (where I live) from her 'not so big city' way the heck up the road.  No specific plans yet, but we have a standing date for whenever she makes the 380ish mile trek. ;)

Go visit if you haven't yet....she's been around for a bit, but some of you may not have had the pleasure...

On a side note, Bean had her 'three month check up' today.  And, as predicted, her A1c was up from 8.4 to 9.0...honestly, an expected increase (just wish it wasn't such an increase!) with all the crap numbers we've been dealing with the past couple of months.  But, I still felt like someone punched me in the gut when the machine spit out it's little print out in black and white.  I love that our FNP never, and I mean NEVER, makes me feel like I haven't done my best, tried my hardest, with Bean's D care based on that obnoxious number.  We know it's a combination of insulin issues, growing (she's up another INCH!), a cold that seems to have turned into pneumonia, and other random kid things that can't be controlled or predicted!  We're starting a new 'three months' and will strive to get that number down to a 'better' place come August!

Sunday, May 20, 2012

Do Over

Remember when you were a kid and no matter what you were playing you could call "Do Over!" and you would be given a second chance?

Well, I'm calling "Do Over!" for D-Blog Week. 

I have no good reason for not participating other than Monday came and went, then Tuesday came and went, and by that point I felt that since I had already missed those two days, what was the point of trying to get caught up.  Yeah, stupid.

While we are on the topic of "Do Over!" I would also like to request a few more....

I'd like a "Do Over" for Bean's pancreas.  I'm stick to death of D at the moment.  The past few weeks, months, have been rough.  And, of course, she has her three month check up tomorrow and I know without a doubt that her A1c is going to be up...great.

I'd like a "Do Over" for my house.  It's a mess and I'm overwhelmed at where to even begin the de-cluttering process.

I'd like a "Do Over" for my weight.  I just can't seem to get going and stay going on the long process of getting those rolls to go away and the number on the scale to go down.  I'm frustrated because I was going to start in April, then my ankle was sprained then my back went out then it was almost May and I got the ridiculously long lasting cough that is going around town.  Now that everything seems to be 'better' I'm going to get started...just hope there can be some progress before I have to put on summer clothes for FFL!  UGH!!!

I'd like a "Do Over" for so many days that could have turned out better...but, there's no "Do Overs" in real life, so I'm just going to have to determine that tomorrow will be a better day and try to make it the best I can.

So, I'll be starting my D Blog Week tomorrow...and it WILL be done!

Friday, May 11, 2012

Friday, The Best Day Of The Week

Yeah, so, Friday is always the best day of the week.

However, today in particular has been the best day of this week.

Bean has been in D-Hell this week.  Not sure if we're experiencing the 'Apidra Phenomenon' that others have mentioned ~ where the insulin seems to crap out at the 48ish hour mark and just doesn't seem to do it's job.  Or if it's her body reacting to the nasty cough she has.  Whatever it is, her BGs have been through the roof.

I got a call Tuesday around noon from her teacher letting me know that she had been in the 300s all morning and was complaining of being tingly.  (This is a new symptom for Bean, this 'tingly' feeling.  It's like parts of her body have 'fallen asleep' and the feeling is returning. Lovely.)
It was pod change day anyway and I had honestly toyed with the idea of changing it before school because her overnight numbers weren't fabulous and she was at 323 for breakfast. UGH!  But, since she was coming down (287 about an hour after dosing and twenty minutes after eating breakfast) I thought she could ride it out since morning pod changes are even less pleasant than evening ones.
No such luck on the waiting til before dinner to change the pod.  I headed to school to do a pod change and cranked her basal and gave her a shot to try to help her come down and stay down.  However, she still spiked into the 400s. Lovely.

She was 162 for dinner, so I figured all was right in D world again.  WRONG!

Overnight she crept back into the 300s and no matter how much I cranked her basal and rage bolused (we're talking almost doubling the freaking recommended bolus!!) those BGs just wouldn't budge.  She was doing pretty good at breakfast (169), so I was hoping that whatever was keeping her so dang high was on it's way out.  Yeah, right...I should totally know better by now!

She did OK during school.  No tingly feeling, no utterly terrible numbers to warrant a phone call, but still in the upper 200s, so not a 'good day' to say the least.

Overnight brings more numbers that are way higher than they should be (yep, totally changing those basals!) and I tell Bean that we're doing a pod change she'll be staying home for the morning so I can get her back into range before sending her to school. She FREAKS OUT.  Not the 'OK, Mom, I feel crappy from being high again all night and think it's a great idea for me to stay home for a while' that I was expecting.  OK, so I was expecting more like 'OK, Mom' and then her rolling over and snuggling back into her covers.  She tells me, through almost tears, that she has to go because they are finishing their Mothers' Day projects.  Yeah, go ahead and let out that 'awwwww'!  So I tell her she can go to school (such a nice mom I am!) and that she can come home at lunch if she's still running high.
Out comes the new vial of insulin for the pod change.  I add a hefty unit to the first bolus (we generally add 0.5u just to kick the new pod into gear...just seems to work for us, your D and pods may vary!) and cranked her basal to almost double what she normally gets.  I get a call after lunch that she's super tired (well, duh!) and I go grab her and let her nap on my side of the bed...amazing how much of a treat that is!
She wakes up at a wonderful 159.  Ah, new insulin and rest...wonderful things!!

The rest of the day went well and her overnight was way better.  She dipped to 99 and then spiked to 190 because of the applesauce to keep her from going lower, but I was totally OK with that.

Today brought numbers in range, other than her typical breakfast spike (but even that wasn't much above 250, which in Bean' book is dang successful!).  So glad that things seem to be regulating and the new basals seem to keeping her in check.

....until next time, that is!!

Monday, May 7, 2012

The One Where I End Up Doing What I Didn't Want To Do

Hi there.

Yeah, it's me.

Remember me?

I've been wanting to sit and blog, but every time I do, it just seems like I'm whining and complaining.

**I've already typed and deleted three beginnings to this post that were total whine-fests!!**

Everyone's tired.  Everyone feels like they aren't doing all they can for their D-kid.  Everyone gets hurt and sick and run down.  Everyone feels lost and disconnected.  Everyone sets goals they can't seem to achieve.

Why am I any different?  Why do I deserve to whine and complain about my life?  Why do I think anyone wants to read about 'poor little ole me'?

Why?  Because we all need to know that we're not the only one suffering in this crazy world.  Because maybe you've been stuck in crap land, too, and need to know you have company.  Because maybe you're flying high and can offer words of encouragement, hope.

**gosh, I might as well break out the cheese because I'm sure whining enough, huh?**

I think I have the opposite of Spring Fever.

Sure, I'm loving the sunlight (almost 17 hours today!!) and the fact that green grass is growing and trees are budding and I've been wearing my flip flops (yeah, it's in the 40s and 50s, what of it?)

However, Bean has 8 days of school left.  That means that summer is upon us and there are days to fill with activities so that the girls don't kill each other and/or I don't use some fancy duct tape on them!  (have you seen some of the ridiculously CUTE duct tape that's out there?)

It also means D-Camp and VBS and culture camp and Friends for Life and camping.  Stuff that overwhelms my brain with logistics and finances and planning and ugh!

I'm dreading the 'catch up' that H.A.S  T.O happen with Bean over the summer with her school stuff.  She needs work to get her where she needs to be before the beginning of school in August.  She knows it; I know it; but there's a reason I don't home school, so I'm hoping we don't kill each other in the process of enhancing her education!!

Not to mention the 'around the house' projects that need to fixing the leaking roof (which isn't leaking now that all the snow's gone), fixing the ceiling that was damaged because of the leaking, ripping out and replacing carpet damaged by the leaking, deciding if we are returning the girls to the same room and if not, painting and decorating the other room, whittling away at the clutter and crap...a never ending process, it seems!

UGH!  I already want to take a nap tomorrow just thinking about it all!!

So, I guess I just needed to much for not having a complaining post!

Super happy Diabetes Blog Week is next week!  Looking forward to getting out of this bloggy dry spell!!
   **Make sure you go and sign up!  It's such a wonderful week of same in the fabulous DOC!**