Friday, March 23, 2012


 ... lots of snow ... leaking roof ... dripping window ... wet carpet in girls' room, from some where, but not the dripping ...

 ... stinky, musty smell in girls' room ... sleeping together on futon in other room ... took them three hours to go to sleep last night ...

 ... red, splotchy face ... achy joints ... Bean didn't 'miss out' on Fifths Disease that's going around her school ...

 ... butt's dragging ... still need to shower ... thinking nap time for Bug will be nap time for everyone today ...

 ... ugh ...

Wednesday, March 21, 2012

Wordless-ish Wednesday ~ BLUE Shoes

I have been wanting to be a part of the Blue Heel Society for quite a while now.  However, I'm not a 'heels' kinda gal and I've had a really hard time finding blue shoes around these parts.
These little pretties jumped out at me yesterday while I was at the mall...a rare occasion...and I just COULD NOT pass them up!!

They are amazingly comfortable and they make me they will be great conversation starters and open the door for D education and advocacy!

Monday, March 19, 2012

Much Better Monday

The suckfest that was Spring Break last week is OVER!!!

You are welcomed to relive it here, here, and here...not that anyone wants to, especially ME!!

Bean is back to school, and it seems that the return of structure is doing wonders for her BGs.  That, and a new pod on her tummy (best place for her) and a new vial of insulin used to fill said pod!

Check out the pretty graph....

Still can't seem to figure out that breakfast spike, but it's way better than it used to be (believe it or not!).

And, for the record, her actual BGs on her PDM were between 106 and 207.  Not to say she may not have gone higher (duh, she ate breakfast!) or dipped a bit lower (Wilma {Bean's CGM, in case you are new around here} was pretty off at dinner...she said 74 and Bean was actually 106).

I turned off her basal for an hour at bedtime because she was at 109 an hour an a half after a bagel with cream cheese and nutella dinner (keep the judgmental comments to yourself, please!).  Guess I over did it on the carb count, or it's just waiting for a few hours to kick in.  Tested her right after I snapped the above picture and she was actually at 207.  Still OK with me...a bit higher than I thought she'd go, but whatever!  

Oh, and I entered her BG into Wilma and she 'corrects' to display 156.  Um, No, not close enough.

Why is it sometimes I can enter a 'corrected' BG into that silly thing and it will come within 10 points and other times it decides that it's not going to budge at all, or very little.  Seriously, does it think I'm joking?  That I'm making up the number?  If I put a BG in, I want Wilma to 'correct' to that number.  Is that too much to ask?!?!

Here's to a Terrific's field trip day, so we'll see!!!

Sunday, March 18, 2012

We're Booked...Are YOU?!?

We are so excited about going to FFL this summer!

What an amazing opportunity to hang out with hundreds of others living with D.

I am highly considering doing a quilt to display as a part of the Quilt for Life.

Would be amazing to meet up with who ever from the DOC is going to be there!!

Now to figure out plane tickets...ugh!!! :)

Thursday, March 15, 2012

"Mama Said There'd Be Days Like This..."

...OK, so maybe my mama didn't say that, but it's true all the same.

Spring Break continues to be a suck-fest.

Appointments that bring the same sucky results.  Appointments that end with the urologist telling you he really doesn't know what to do about the whole continuing reflux thing other than to try taking Bean off of her daily antibiotic to see if the reflux will cause a kidney infection.

**Let me jump in here and tell you that the ONLY time Bean has had a kidney infection is the couple of times we've tried taking her off her daily antibiotic.  And these aren't 'easy' UTIs.  NOPE.  They are raging (pediatrician's words when Bean had an infection when we were in Atlanta when my dad died ~ fun times!) Kidney Infections that come with fevers in the 103 to 105.7 (yep! love that number!) range for at least three days, with at least two injections of broad spectrum antibiotics that HURT.  She doesn't get the 'normal' symptoms of painful urination or aches in her sides.  Nope, just a massive fever that comes out of no where.

Not really the first course of action on my list, taking her off antibiotics, I can tell you!

Granted, we won't know if she'll have a kidney infection unless we take her off the antibiotic.  But, being the realist that I am, and history being what it is, I'm pretty sure it's gonna happen!

So, we've decided that we'll be waiting until school is out to try this wicked experiment of taking her off her daily protective antibiotic.  Not chancing her having to miss a week or more of school to satisfy the urologist's curiosity about whether the reflux 'matters or not' any more.  Plus, I have NO IDEA what kind of havoc an infection like this could wreak on D...suckfestpalooza, for sure!!

And to keep with the suckfest theme, here's a gut level honest look at Bean's day yesterday:

Yeah, I'm thinking that leg site isn't working so great.  Plus, Wilma (Bean's dexcom CGM) hasn't been providing the best results for the past couple of days.  That's a bit of comfort, knowing she hasn't been quite that high or spiking quite that steeply, but it still isn't pretty if you were to graph her actual BG readings.

The day before looked kinda like that, too.  And after two days of seeing sucky numbers that don't want to budge and spiking BGs from meals that shouldn't affect her quite that badly, add to that wonderful test results, I'm feeling kinda beat up.  I've eaten too much chocolate cake.  Had way too many Girl Scout Cookies.  UGH!

I know, 'this, too, shall pass' but right now, in the middle of it, it SUCKS.  I'm ready for some more normal stuff.

OH, and to top it all off?  We are within just a couple of inches of snow to break the over 50 year old record.  Last count I can find, we've had 129.4 inches of snow.  That's a dang lot of snow!  It snowed most of yesterday, and the forecast is calling for more over the next few days.  Just really, really hoping we don't have a St Patrick's Day dump like we did 10 or so years ago when we got 18 inches!  UGH, UGH, UGH!!

Enough whining for now...there's laundry and dishes to do, oh joy!  

And I should probably go see why the girls are playing nicely!  Not always a good sign!!! ;)

Sure hoping for a more 'upbeat' post soon!!!

Wednesday, March 14, 2012

Tuesday, March 13, 2012

When It Rains, It SUCKS

Nothing can drain the life right out of a mom than to have to hold her daughter's hand while she's having an MRI.

Well, whatever life might have still been in me after having to hold her hands and wipe her tears while they numbed her and inserted the catheter.  And had to tell her that no matter how much she wanted to (and I wanted to) we could not just go home.

Bean, as some of you may know, has a condition called vesicoureteral reflux.  That means that when she pees, the urine refluxes back to her kidneys.  She was diagnosed when she was a year old.  She's been on a daily antibiotic since then and has had three surgeries, including re-implantation of her ureters.  Her Urologist is baffled as to why those surgeries haven't 'fixed' the issue.

Last time we had an appointment with Dr B it was just a couple of months after her dx with D.  He, and we, decided to just leave well enough alone for the time being and just keep her on the antibiotic since she hasn't ever had a break through kidney infection while she's taking it.  February marked the 'time to recheck things' point and I called to make appointments for tests and consultations for this week, Spring Break.

The doctor that performs the tests called Monday to change things from her regular X-ray procedure to an MRI because he felt she was pushing it on the radiation and he felt we'd get more useful and thorough information with the MRI.

We go tomorrow to talk to Dr B about everything, though we already know Bean's still refluxing.

This condition is something most kids grow out of by the time they are 5.  This should have been fixed with the first surgery, REALLY should have been fixed with the second, and we were given a 99% 'this will work' with the third.

I'm so over this.  Over Bean having to take an antibiotic every flippin day...which, in and of itself, can cause some long term issues.  Over Bean having to pee more than any normal kid, not even factoring D into the mix, which adds it's own wonderful peeing issues.  Over Bean having to have tests that hurt her when they shouldn't hurt at all...even when she's numbed, the catheter is very painful.

Oh, and it gets better!!  Because this was an MRI, and not an X-ray, we had to remove her pod...less than 24 hours 'old'...AND remove her dexcom sensor...barely 12 hours old.  This after having to do four in a morning four days ago and having to do yet another dex change last night because of either ???s or readings that were 100+ points off.

And not to keep whining or is Spring Break and although I am fully aware that I live in Alaska and that it's not technically Spring, temperatures BELOW ZERO are NOT OK.  Especially when you have to get up and drag the girls out of their warm beds to take Ubergeek to work.  UGH.

Sunday, March 11, 2012

Double the Pleasure, Double the Fun...

...with Double Pod, Double Dex, Double Change, UGH!

Picture it, Alaska, 1-ish am.

In walks a beeeeeeeeping Bean, bleary eyed from disturbed sleep.

I hear her coming from down the hall, willing my eyes open to acknowledge her presence at my side of the bed.  (why is it that kid NEVER go to the 'dad' side of the bed?!?!)

She states the obvious, "I'm alarming" and then  "Please, please, please can we NOT do a pod change now?!"

I have her deactivate her beeeeeeeeeping pod, test...a 188, A-OK for her to go back to sleep without a pod as far as I'm concerned (especially since I've been having to either reduce or turn off her basal at some point in the wee hours if she's been corrected, which she had been).

Morning rolls around and a new pod is placed, she tests (251...not a great morning number by any stretch of the imagination, but I was fine with it considering no one wanted to do a 1 am pod change!) and doses for breakfast.

We go ahead and also do a Wilma (dexcom) sensor change since she's been giving us ??? off and on for a couple of days and had a handful of readings in the past 12 hours.  The two hour waiting period begins and we go one our merry way.

About 2 1/2 hours later, give or take (it was an In Service Day, so no school for Bean and no subbing for me, so we kinda didn't care about the time once Ubergeek was dropped at work and Bug was dropped at her 'school'...she LOVES going, it was Friday ~ which means prize day, and it was paid for, so she went) Bean starts beeeeeeping again.

We both utter a 'seriously?!?!' and start pod change number two.  (We have had far more than our fair share of alarming pods with this shipment.  Thankfully it's not the norm, but when it rains, it seems to pour, and it gets really, really old...especially when there's been 8 since Valentines Day!)

While we are waiting for the pod to prime itself, I ask her if she's entered the two start up BGs for Wilma, since it's been longer than 2 hours.  She says she hasn't, so I check her receiver to see if it has the little blood drop on it, indicating she's ready for those two start up BGs and I see "SENSOR FAILED."   Never seen that before!

So, that means it's time for sensor change number two.  Supplies are gathered, added to the ones already piled on the table, and off we go.

Buttons are pushed, cannulas are injected.  More buttons are pushed, a thin wire sensor is injected.  Whimpers are uttered, tears of frustration are shed, and the plethora of tissues and swabs and adhesive backings and and and are appropriately tossed.

The day progresses without further incident, thankfully.

The pod is trucking right along and Wilma has been tracking pretty close to actual BGs.

Thursday, March 8, 2012

Not A Week Off

This was supposed to be a week off.

The 'full time' teacher finally had all of the necessary papers processed and I was relieved of my long-term sub job last Friday.

I relished in the alone-ness of Monday.  Ubergeek was at work, as usual.  Bean was at school, as usual.  Bug went to her normal childcare for Mondays because we had paid for it and I needed a day to myself.

I dropped everyone off at their respective places and went home to my quiet house.  Knowing I planned to attack the downstairs to try to find floors that haven't been seen for weeks and tables that have been covered with this and that for weeks, I decided to grab a bit of a nap.  Plus, I was TIRED!!

My phone rings about 20 minutes into my nap and I see that it's the school.  Of course it is!  I answer, because there's no way I'm ignoring the call, and I hear that Bean is in the office complaining that there is dried blood around her cannula.  Being the responsible, yet tired, D-mom I am, I ask if the pod is alarming and it's not.  I tell the secretary (who is also a good friend) that Bean's fine, but to keep an eye on her numbers for the day and if she starts to run high (indicating that the insulin isn't getting through) then I'll come and change it.

I roll over and convince myself that she'll be fine and drift back to nappy land for a fabulous hour of quiet house sleep.

The rest of the day I kicked the messy house's ass.  I cleaned the playroom, cleaned the living room, found the dining room (catch all) table.  I vacuumed, I swiffered.  I washed, dried, folded AND put away (holy cow!!) laundry.  I got the futon that my mother slept on in DECEMBER back to couch status.  I was productive and it felt good!

My phone rings at 3:45.  Well into Brownie meeting time.  (yep, you know where this is going if you saw yesterday's post)  My friend tells me that Bean is back in the office and has ripped off her pod!!  LOVELY!  Being the amazing friend she is, she has already had Bean test while calling me.  She's at 86.  A fabulous number for her to not have any insulin for an hour-ish until Brownies is over.  And it's a good thing, too, because I had just gotten out of the shower and couldn't exactly rush right over!

The rest of the week, I've been subbing for the teacher I have been partner teaching with since the beginning of the year.  It's been fun having 'my' kids and seeing the 'other side' of their day.  Granted, I could have used another day to attack the upstairs, but having three more days of pay is also nice!

Thankfully tomorrow is an In Service Day for teachers to do grades for the end of the quarter and next week is Spring Break!  Not that I will be utterly productive with the girls home, but not having to get up super early will be nice, none-the-less!!

Wednesday, March 7, 2012

Sunday, March 4, 2012

Standing Together

Today we are standing together in prayer for the Schumacher family.

Please join the prayers of those all around the nation, the world, for healing and peace.  

Offer your prayers to a God that is bigger than any problem we might be facing.  

He hears us, this I know without a doubt.

Matthew 18:20  "For where two or three gather in my name, there I am with them."