So many firsts...

Was a good and big week, full of lots of firsts.

First day staying home alone -- responsible for meals, blood checking on her own.

• Lesson learned: we check blood when we wake up, even if we're not hungry. 

First major holiday -- requisite buffet of food included.

• Lesson learned:  parties are fun again.  thank heavens.

First real exertion -- the water park!

• Lesson learned:  we start with a high blood sugar, not an on target blood sugar.  We don't do any insulin while we're out playing and aim to keep bs between 140-200.

Holy smokes, we're rocking it.

Is there a specific reason I have to come home tomorrow?

Not me. Hannah.

Sounds like the day was awesome. Tim and Heather are doing great and the girls are having a blast. Evidence below....

Sigh of relief. Officially breathed.

It's a big week....

One of the realities is that I need to get brave, and get our friends comfortable with having Hannah over.  And it's not that I haven't been brave.  I have been ridiculously brave.  When I hear stories of other families I realize I've been a real champ in moving us through this.  Stories of families that stayed with 2 am checks for years.  Families who didn't go out to eat for the first year.  Families who didn't leave their child with anyone for years.  The weight of not having options for her (or having all options be with me (or Jim)) is too much. I need her life to get back to normal, where she goes to play and to sleepover.  But more than what I need, she needs it. It's kind of the final frontier in this initial transition to diabetes

So, last night she spent the night with Hanna.  This is actually the second time....Heather and Eric both grew up around diabetes and they're really comfortable with it, which makes me comfortable.

But tomorrow, she spends the day, the night, and the whole next day with Sarah, Emily and Auntie Heather.  She's excited.  I'm excited.  I hope they're not petrified :)

It's really hard to know how much to say, how to prepare them.  Carb counting, obviously.  Hannah can manage her pump.  I've decided that I'm leaving it at how to count carbs, at what point to call me, and what to do if she crashes.  The crashing....it's so unlikely.  But it could happen and they have to know what to do. (Juice or Sugar if she's conscious, Glucagon injection/911 if she's not).

I just keep reminding myself that the most likely outcome is that she goes high from conservative carb counting (which happens to everyone) and that I can talk her through anything else....because I am AWESOME.  :) ahahahahha.  Or at least because I know some stuff after three months of these shenanigans.

And we're off.....

Sticky...

Who knew?  There is a product made to go over your site that extends the stickyness so it won't fall off so easy.

And it's covered by insurance.

And the AWESOME AMAZING people at Medtronic will send it UPS.  I love them.

Without words.

Sometimes, I feel without words, but then I find them.  At least in writing.  But since we got the pump, I've really been without them.  Completely unable to find them. Not entirely sure I've found them still, but don't want too much time to pass in case I forget....apologies in advance for what is sure to be a jumbled mishmosh of words.

Turning the pump on was equally liberating and terrifying.  There were some things about using the pump that I didn't understand, in terms of how tightly we would be able to control blood sugar.  The device is intuitive but extremely complex. We had near perfect blood sugars for the first two days... between 85 and 100.  No shots was (is) bliss.

We turned on the pump on Tuesday and we had our next check up on Thursday for a site change and some adjustments...though her blood sugars were great and level, they were on the low side. So we tweaked her carb ratio to increase her sugars slightly.  So nothing was amiss on Friday when her sugars were higher -- though they were higher than I expected.

The pump makes you brave with food -- it's easier to eat different things, and eat more naturally.  New foods (new carb foods) were unknowns.  So nothing was unexpected when her blood sugars coasted higher.

By 2 am, we were above 300.  We talked strategy, checked ketones (negative) decided to bolus (give insulin) and regroup in the morning.  By morning she had climbed about 370.  No ketones (whew).  Decided to change site. Just as we were finishing this, Hannah said she didn't feel well.  She passed out and hit her head twice on the way done.

My instinct was to give her juice -- she had a sip before I snapped back and remembered we were dealing with a high.  It just happened so fast.  Quickly gave her a large dose of insulin to bring her back in range.  The nurse and later the doc said juice was still the right instinct...while highs are a drag, it's severe lows that are the danger.  We spent the next day and a half trying to right her blood sugar.

Unnerving.  When her sugars started to bounce back up, Hannah and I both were starting to wonder if we'd made a good decision about going on pump.

We've had a bit of trouble with the pump staying connected.  Fell out a few nights later while she slept, though I think we caught it fast.  Fell out on the last day of school. Thankfully Han is a trouper with site  changes.

Yesterday took the cake in terms of weird.  Han was at Jim's and called because they were having issues with the site change.  The pump didn't seem to be working correctly with refilling canister.  We talked through it, and then decided site was set and we should be fine.  She climbed all day, apparently, and called when she was over 400.  Went to change out the canister of insulin....and it was EMPTY.  No wetness anywhere.  No alarm about low insulin.  No clue what happened.  Ah well, she survived.  Just crazy, crazy, crazy sometimes.

The pump makes this so much easier, but in some ways it is complicated.  Easier to forget.  More control with Hannah, trickier to oversee.  Frustrating in that much of the learning just takes time.  Patience....never my long suit.

We're done with school now.  For the first time, I don't have a plan.  I've got the kids (mostly) covered for 2 weeks, and then no plan.  It leaves me with a vomitous feeling. And yet, I can't figure out what to do. Diabetes really forces you to stay in the moment, and I can surrender to that....but it also leaves me with an underlying tension. I can't seem to work more than 24 hours in advance.  I'm sure it'll sort out and be fine, but the tension is wearing me thin.

More to come, enough for now.

Diabetes Education. Fail.

We of no free time sat down to do our diabetes education online this afternoon, only to find the classes unavailable.  Of course.  So we went old school and worked through the books.  Most of it was review... though there are more courses online that we'll get to complete.  Thankfully, lots of review, with a few new things thrown in.

On the bright side, Medtronic has a 24 hour support system -- and man, were they ever friendly and helpful.  Someday, I think I'd like to work for them.  The people are freaking incredible.

Tomorrow we begin our pump appointments.  Amen.

It is almost time....

Hard to believe that it is almost time to get set up with the pump. Crazy. Nurse is prepped. Teacher is prepped. Support team at school is prepped. With what I know now anyway. Next week brings hours and hours of doc appointments on Monday Tuesday and Thursday. As happy as I am to be moving away from shots, I'd be lying if I didn't say that part of me laments moving away from what feels comfortable back into the chaos of weird blood sugars and unknowing. Because let's be clear, there is still plenty of unknowing to go around right now. Back to 2 am blood checks and learning how the body is going to respond to insulin drip rather than a single dose of 24 hour insulin. Learning her reactions to different types of carbs so we can bolus (give insulin) correctly. Learning to finesse the pump...supercomputer that it is. They call the kind of diabetes management we have been doing a poor man's pump. It's simple and rudimentary,imperfect but gets the job done. Her diabetes management will be so much better with the pump but it is so advanced. I'm us we will learn it quickly, but for now, it is feeling a little bit crazy. So tired of shots...but they're known and comfortable. This weekend...lots of online learning...classes we have to complete before we go to our appt on Monday.

Remember....

In better news....

One week from today, someone we know and love should be wearing a pump.

No. More. Shots.

Thankful for a few more years...

I have a cousin, about 10 years older than me, who was diagnosed with T1D on his 12th birthday. Was talking with my aunt yesterday and promptly got off the phone and vomited after hearing this story...

Dave was in the midst of moving... got in the truck to go between the houses.  Blood sugar crashed. He (thankfully only) hit a curb, but he was out.  Car...still running.  Dave locked in and passed out.

Police and fire came, blocked the car in case he came to and hit the gas.  Finally got in to get him some sugar.  He has no memory of any of it.

He could've hit something and been injured.  Or died.  He could've hit someone and they could've been injured.  Or died.  This could've been a phenomenal mess.

With diabetes, it can happen and it can happen fast -- especially if you miss a sign.  Even when you've been managing your diabetes for 38 years.

And with that, I'm thankful that Hannah has 5 more years before she gets behind the wheel.  And with getting a new pump every four years, it's likely that the next gen tools will be even better.  Diabetes isn't just a pain in the ass....it has the potential to be very, very scary.

Meh.

And she's off...

She's off to Eastern Washington with Dad and Tara and Cody and Cody and Ben for the long weekend.  Lots of good conversation about making sure she feels ok with everything...how to manage with different schedules and different foods and different activities and different people.  Cannot wait to hear how it goes.  Feeling thankful that we're not dealing with the pump this week. (But we will be soon! WHOOP!)

In the meantime, 4 days and 4 sleeps of being responsible for no one.  Ahhhhh.....

Pizza and Ice Cream and Cookies! oh my!

Hannah had a great birthday! Pizza! Cookies! Ice Cream! Friends! Sleepover!

It meant more insulin, but we did it.  And it was fun and fine.

First diabetic birthday. Check.

I think it finally hit me yesterday...

I think it finally hit me yesterday... that I am tired.

I went to the diabetes support group Thursday night and cried all the way home, cried all night and cried all the way to work.  The meeting in and of itself was fine...mostly a planning meeting for the group rather than what I would traditionally think of as a support group.  But the women who were there...they were tired.  TIRED.  Beyond exhausted.  They are years into this and they still have questions and feel isolated and have crazy blood sugars and issues with schools....and...and...and...

After diagnosis, I was told it would take about a year to level off.  And I held it together, unsure of how I would pull this off for a year, but at least I knew what to expect.  To see these women, though....it really decimated any remote sense of hope I'd been clinging to.  Expectations and sense of new normal are going to need to be renegotiated.

A few more weeks and we'll be on the pump.  The bright side is that at least this will remove shots from our lives.  Even if everything else is still crazy, at least we won't have shots too.

What surprised me is that once I started crying, I haven't much been able to stop.  Delayed reaction perhaps.  What I wouldn't give for a few days in which I could not have to think about this -- but also not feel pressured to catch up on work or home stuff.  But then I think of Hannah who will never get a day off and I feel pretty crummy for wishing for respite.  But I do.  I do wish for a bit of a break -- and not the one in 7 years when she goes to college. :)

Birthday sugar

Birthdays and diabetes. Whoa.

I decided last night that birthdays would simply require a bit of grace. That expecting and being ok with potentially wonky blood sugars was the best approach.  Very interested to see how the day unfolds.

About to go wake H up for her birthday breakfast and go pick up treats for school.

Welcome to eleven, Hannah!!

2 days, 20 days

2 day until Hannah turns 11 and we attempt a weekend full of fun and friends while trying to manage blood sugars.  We have a plan, but I gotta tell you: kind of overwhelming.

20 days until the pump is hooked up.  We couldn't be more ready.

Empty

The scary huge awful intimidating box of diabetes material from the hospital is finally sorted through. Amen

TSA...get it together

Ugh...Hoping we find people who know the drill when we fly.

Story here.

Bad blogger mommy

Oh man....it's not that there haven't been things to say... I've just struggled with the words and with the time to sort out the words.

We'e made peace with the June 5 start date for the pump.  I think the universe knows better what will work for us than we do.  This gets Jim and the kids off and back on their memorial day trip without having to be newly on the pump with crazy blood sugars away from home.  It's hard enough to have diabetes.  It's harder to have diabetes and be out of your normal routine.  It's harder yet to be out of your routine and have whack blood sugars.  All I can say is that I'm really looking forward to the pump.

Blood sugars remain mostly in range.  Had a few crazy days, amplified by the fact that the bleeping clinic would not return my calls....which resulted in a carefully executed, graceful, kind but stern smackdown with the customer care center in which I asked what my expectations should be around callbacks.  When I finally got to a nurse and explained what had been going on, she confirmed it was serious (validating) and was even more apologetic about not getting back to us (maddening).

When there is a monopoly on care within a 30 mile radius of you, one thinks twice about being a difficult patient family -- but at the same time, what the heck am I supposed to do? Our pediatrician didn't know the answer, I'm sure as heck not going on the internet to look, and it left me contemplating a switch to Seattle care, which would've been a serious pain.

In happier news, today is the JDRF walk.  Hannah's team raised over $1600 -- amazing for a slapdash throw together effort.  We've got a big group of friends walking on what is shaping up to be a gorgeous day.

The pump. It's here. But....

We can't start the "REAL" pump school until June 4.  <<insert wails of despair here.>>

More later.

Pumped up!

Five hours ago, I would've already felt that I had a lot to say on this post, but now....Whoa.

Yesterday was pump school, part one.  Katie from Medtronic walked us, and two other families, through why a pump helps you better regulate your blood sugars.  We loved Katie because of her name, because she has the same birthday and because she was awesome.  The class was a lot of review, but learned a lot about some other cool features of the pump.

Things like different type of bolus'.  A bolus is a dose of insulin.  The pump has three different ways to provide the bolus...immediate, arced (starts low goes high goes low again) or square (prolonged distribution of insulin).

There are things like patterns -- if you always go low at Grammy's house (yeah, right! cookies everywhere!) you can set a pattern that changes the way your insulin is dosed without having to reprogram everything when you go and when you come back.

And you can set basal insulin (the stuff you need all day long) and your short acting insulin (with food or to correct a high) to be at different rates at different times ... as much as a new rate each hour.

Pump installation was easy breezy.  Didn't hurt Hannah -- though there was a lot of nervous energy.  And by a lot, I really mean a lot.  And we walked out with a practice pump that's dosing saline so she can practice.  Which is cool.  Less cool was the fact that alarms reminding us to test were going off all night that we didn't set, didn't know how to stop and don't know how to turn off for tonight.  Good times.

We asked Katie if there was any chance of getting a pump before their birthday: May 18.  She kind of grimaced and said maaaaaaaaaybe.  Which was great....we knew inside of a month we'd have the pump.  I filled out the little bit of paperwork she needed to get going, emailed her a blood sugar log this morning and thanked her.

So imagine my surprise when I got home after lunch to pick Cody up for the orthodontist and Medtronic called.  Michelle was telling me that before she put my pump in the mail today......  WAIT?, WHAT?!?!?!?!

Yep.  Katie the awesome somehow pushed through getting prescriptions in order, insurance processed and approved and had Michelle calling me at 1.  We walked through colors for the pump and the sites (two different lengths of cording to give Hannah options with what she's wearing).  We walked through resources online and what would be coming in our magical box.  And best of all, we learned the pump will be 100% covered, as will all the supplies.  <<insert actual weeping with joy here.>>  As if that wasn't enough, we'll be getting a continuous glucose monitor that will make things even easier and better for us in the long haul.  That slows down insurance, so they held off on that piece in order to get the pump here.  If Katie and Michelle are representative of Medtronic, I'm in love.

The pump should arrive on Tuesday.  We'll go to pump school part two on Wednesday.  We'll be on the DL, because the other boys won't have their pumps yet.  But on Tuesday, we'll schedule a 1-1 with Katie to get her pump all set up.  We could be using it by the weekend.  Honestly, I'm a bit beyond words.

In other news, Cody's had an awesome week.  His student led conference was fantastic.  He's rocking straight As.  And he has just been really, really awesome since this has all gone down.  The ortho appts went well.  Hannah got a pass (amen.  She did say "Mom, you don't think I would have bad enough luck to get diabetes AND braces do you??") and looks like she won't need correction at all.  Cody needs correction and will spend a year in braces.  Thankfully not horrible stuff, just stuff that needs to get fixed.  No headgear.  Whew. And, he can still eat apples.  Which, as those of you who know us well know, is one of about 6 foods Cody eats.

All in all, a simply awesome day....

Yes!

More later, but, someone we know and love is wearing one of these right now....

Easier to get into the Kremlin

Should you ever find yourself completing paperwork for diabetes camp, I suggest you arm yourself with:

1. A doctor
2. A lawyer
3. A brand new pen
4. A notary
5. A copy machine
6. A very generous glass of wine

Mercy.

In case you're keeping track...

...there is only one more sleep til pump school. That might be causing a certain sweet girl to nearly lose her mind with excitement.

Take a chance on me...

So when it is sunny and 70 and your friends are over, and you're dancing and singing your noisy little hearts out to the Mamma Mia soundtrack, you might just forget that you're a diabetic.

Blood sugar = 58.

A day full of new adventures and struggles

Today was a crazy, fun, incredibly full day.

We started with breakfast at Knapps and navigated restaurant food and estimating carbs.   Hannah had pancakes and bacon and hot chocolate with whipped cream.  And we even ran in to Dad and Tara at Knapps!

It would be hard to be a complete type A with diabetes. The inclination is totally there -- wanting to get the sugars right and get the insulin right. But it's really inexact at times.  There is guessing and estimating and hoping involved in calculating carbs.  How much of that 1/4 cup of syrup did you eat?  Well, we asked for 4 inch pancakes, but those are more like 6-7....how the #$(& many carbs do we think are in THERE???  Thank goodness for bacon.  It's zero.

Hannah (and Daisy, too!) walked with 4H.  Cody, Hanna, Tim and Evan walked with the band. The sun was out, it was beautiful.  We got to visit with the Barkers and the Jaasko-Fishers, and sat with the Wroes, Jeff and April and Jenn.  And, I think, saw everyone else in town that we knew.

From the parade to the Jensens for lunch and playing.  From the Jensens to the Barkers for a pool party and dinner and playing.

Which sounds great, and for the most part it was.  Except when you have a new diabetic who is overwhelmed when food is about.  And there was food everywhere. All day.  The other kids can endlessly graze and munch and don't have to think twice.  Not quite so for Hannah.

On the bright side, she takes her sadness well, choosing to remove herself from the situation, rather than melting down.  But it's hard.  It's hard to watch it happening and not be able to fix it.  It's hard to work through the tears afterward.  It's hard because selfishly, I too, wanted to visit with my friends.

I know it will get easier, but Han and I are both feeling kind of sad tonight -- having left Cody and all else at the party.  We talked a lot about how to learn to be ok around food, so that we don't miss fun times.  I'm not sure that Hannah see's that as possible right now. Just going to take some time...

Survived...

We all managed to survive the first post-diabetic work trip.  Thank goodness for cell phones, patience and two nights of sleep.

Hannah was NOT HAPPY about the work trip.  Clingy, weepy, whiny as I was trying to get out the door.  The trick with her is that she is good at turning on the drama.  What's for real? What's for show and influence?  Who knows...not me for certain....most days, anyway.  I was pretty giddy at the thought of not one but two consecutive nights of sleep.  Crazy hotel aside, sleep was delicious.

Once we got through the first day, things got a bit better.  And she did well with both Heather and Heidi helping with dinner and assisting with shots.  Once she knew I was on my way home, it was a pretty constant plea to just.get.home.as.fast.as.I.could.  But of course once I was here, she wanted to stay at Anna's house for a bit longer.  After my eyes rolled back into my head at the ridiculousness of her at times, I thanked my lucky stars for an hour of quiet, in my home, alone.  Something that has happened precious little in the last 6 weeks.

Tonight brings Anna and Hannah playing and giving Daisy a bath, so she (Daisy) is presentable for the parade.  Tomorrow, Cody's marching with the band and Hannah and Daisy are marching with 4H.  And then a day playdates, barbeques and new experiences.  Hannah is still pretty reticent to eat away from home.  Which is equally understood and exhausting.  Crossing fingers and toes for a good day.

Walking for a cure. Join us?

May 12 we will be at Cheney Stadium for the JDRF walk. JDRF= juvenile diabetes research fund. You can walk for free, and you don't have to fundraise. We would love to have you join our team. More info here. So far we have raised over $1000. You don't have to donate of course, but if you'd like to support us? We would be thankful. Seriously, more than anything this event is a show of support for those with diabetes. And would we ever love to have you join us for a flat leisurely 5k-ish walk. Not timed. A stroll really.

Work trip + Diabetes = crazy

The day that we went into the ER, I was a actually headed to Portland after the appointment, which obviouslly didn't happen. I had a trip scheduled for that week and the next, the final two weeks of travel in a six week push since my job duties changed. Those trips thankfully rescheduled into one three day stint to Portland this week. Now, being divorced a work trip always requires additinal planning. Jim is great about making it work so the kids can stay there, but it requires a lot of planning and communication with him and with the kids. Add diabetes to the mix? Ahahahahah!!! Aside from all the normal prep like making sure dad knows what is on tap for the week, figuring out who is getting kids to activities and where do they go after school and getting the dog to the other house and making sure the kids know the frill for each day,there were new things to do. And for kicks, Cody started track this week so we've got a whole new schedule in general. Is the insulin bag stocked well enough to last three days? Let the teachers know they can call me but I'm not close. Since Jim is in Seattle, give them a name of someone in Tacoma they can call if needed. Talk to HW about feeding Hannah and checking insulin when she picks up Hannah and Daisy for dog training. Thankfully she is familiar with diabetes, so I just have to send her carb ratio and sliding scale. Talk to neighbors about after school care for Thursday, including what to do for snack and for dinner and what to do if something goes amiss. Make sure she knows the drill with food and do a crash course on sliding scales and carb ratios. Make sure dad know how to send lunch information to school. I'd been on the road for a half hour before the first call came. Yes Cody, just like we talked about six times, your concussion form is in your backpack. (Iinside voice: looking in your backpack first to doublecheck IS an option.) Next call an hour later from a hungry diabetic. Reprieve til lunch time text messages, and then the afternoon calls began, 2 from each kid, once they got home. We navigate snacks, review plans, discuss whether the leaky sink was the same trickle I'd been seeing upon turning on the water or whether my house was likely to be flooded upon my return. To be honest, I do not have clarity on that last question. And with that we've made it through day one. Two more to go.

Does a sketchy druggy live here?

Cody came home Monday, bellowing "Mom!!!  There are needles EVERYWHERE on our sidewalk!!!"

Yep, Hannah's bag was unzipped and she was dropping needles half a block up.  Once can only hope it discouraged rather than encouraged anyone coming to look at the two houses next door that are for sale...

ZERO!

Life suddenly looks better when you find whipped cream with zero carbs.  Thank you, Land Of Lakes, for making it.  Thank you, Costco, for carrying it.

The good. The awesome. The awesomest.

Thursday was such a good day!  We had our second clinic appointment with Dr. Marshall, our endocrinologist, and Janet, our educator.  Lovely people.

The good:

• Hannah has steadily gained her weight back.
• Her A1C number dropped significantly, though it still has a ways to go.  Blood has history (who knew?), and the A1C measures a 3 month average of something or other.  We were over 14 at the hospital, 10ish this week and want to be around 6-8.  Progress.
• Her blood sugars are moving in the right direction.
• Hannah's attitude and approach is awesome.

The awesome:

• We're signed up for pump school on the 25th.  
• We're signed up for pump school on the 25th.  
• We're signed up for pump school on the 25th.  

Um, yeah.  So pretty much Hannah was delirious at this news.  We'll go to class for a couple of hours and walk out with a pump -- that is pumping saline.  This lets us practice with installing connection sites, our new glucometer (blood sugar checking machine), and practice administering "insulin" that is really water. This gives her a chance not only to learn, but to make sure that she's comfortable having the equipment...approximately the size of a cell phone, always attached to her.  Some kids don't dig it.  I'm hoping she likes it as much as she hopes. That will begin the dance with insurance to get this heinously expensive piece of machinery on the way to our house. Then we go back to pump school the next week and wait for our pump to show up.

The awesomest:

• Having a pump moves us from 2 insulins to 1 insulin.
• Having a pump moves us from about 2200 shots a year to about 220...and yes, we are BOTH pretty delirious about this news.
• Dr. Marshall introduced us to Grace, another awesome 5th grader rocking T1D.  Emails exchanged, friendship begins....

This weekend, I face down the big giant ugly box of diabetes paraphernalia that I've been hiding in the bathtub upstairs as to not have to face it.  It must be done.  To counterbalance that barfy task, I spent last night buying some flowers and yard work stuff and am giving myself 4 hours in the sun. Was so excited last night, I gardened til 9 via the yard light.  Total bliss.

Adjustment...

In some ways, diabetes is a return to the types of questions and uncertainty of parenting that surrounded our divorce.

If Hannah has a meltdown - to what degree is it because of or excused by diabetes?  How soon should we expect certain things of her?  How do we parent so that Hannah does not find diabetes to be her fail-proof trump card in any situation? How do we coach her to be stronger rather than fall victim to what's going on -- but still have empathy and be present with what she is feeling? How do we keep Cody from becoming the lost child? And how do we manage this across two houses, with grace.

All things considered, we're all doing so well.  But the questions and the uncertainty and the newness and constant evolution of it all is wearing me thin.  When I listen to parents of T1D kids saying it'll level in a year, I lose my breath and have a silent panic attack -- not entirely sure I can make it through the day. The constant focus and attention on just executing our day - 3 meals, 1 snack, school, homework, basic activities, bathing (sometimes), bedtime...I know [I KNOW!!!] it will calm and gradually get better.  In a month this will be easier and in two months even more so.  But as I face down the reality that we've really just begun...that I haven't read more than 2 chapters of a book on diabetes...that I'm so upside down at work that I feel ill, that we're just moving out of crisis mode and into trying to find our way.....I wonder where the strength comes from.  How stuff gets done.  How I think about things beyond the rote mechanics of feeding Hannah and managing her blood sugar and begin to see progress in other areas too.

It's all a very, very odd place to be.

Calm week? Ahahahahaha.....

A girl can dream....right?!? Monday was spent texting and talking to Hannah, whose stomach was in agony. Flu? Something else? Gah. Who knows. Finally gave up and left work at lunch and pulled her from school. Diabetes changes everything...or at the very least changes my confidence about some aspects of parenting. Who knows what was up. But Hannah didn't feel good which then led to speculation that she would throw up, which typically leads to a one way pass to the er. Stressed out little pumpkin and a puzzled mama. Tuesday...it'll be calm right? Bahahaha. The call came in at 930. The diabetes bag was MIA. Maybe locked in dad's car at the dome, while he is in Seattle. Maybe at home. No nurse which meant our backup insulin couldn't be used. I've only been at work 2.5 hours today before I'm facing a trip home. Thank goodness for good friends, who are willing to break into your house and doubled check ... And then deliver found bag to school. With any luck, lessons were learned about double checking for the presence of the magical bag. Seriously...I think we are due for some luck!!!! High hopes for Wednesday, people. High hopes....

Shots for everyone....

Cody has been a somewhat innocent bystander since team diabetes came to town. But tonight, he got some skin in the game, literally. I needed him to know how to give a shot should he need to. And I needed him to know what shots feel like. So Cody gave Hannah her insulin tonight. And Hannah got to give Cody some saline in the gut. Was a bit tricky finding a place to pinch as his body fat is low, but we did it. 😄 This will likely be an annual refresher for him....very unlikely he will ever have to give a shot, but he has to know how in case she crashes. Feels good to have one more lesson learned. and as Hannah reminds me every 5 minutes, we are one day closer to clinic...

Easter Bunny Rocks

Heaven only knew how the Easter Bunny would handle Easter. Tuns out, brilliantly.

EB left eggs filled with coins. Zero carbs, FYI. And, candy left was clearly marked.

Feeling thankful again today for a sense of normalcy.

Still all over the map...

We're still finding Han's blood sugars are high and all over the map.  She's having some that are "normal range" but it seems that is in the minority.  It's hard to know if that is expected or unexpected, so we just take it as it comes and go from there.  There is something called a brittle diabetic - one who's blood sugars are all over the map and unpredictable.  Crossing fingers, toes and anything else that can cross that we are not that more complicated type of diabetic.

On the docket today...sign up for Panther Camp -- a week long day camp for diabetic kids.  Where everyone is checking blood sugar and everyone counts carbs.  And everyone feels normal.  Heart officially broken that we have to go to camp to feel normal....

DAISY!

When your dog finds and eats your carefully and precisely measured and baked toll house chocolate chip cookies, with the exact carbs known... When that happens...  You will cry.  No question about it.

What? I'm cute! I'd never do anything bad....

Almost like before...

Today we had a slow start...took the day off to hang with Hannah.  Cody (remember him??) is out at Grammy and Bumpa's working on a project, so we had girl time.  Nice.

Nice and getting better.  The girls came over, with their dolls and a day of playing ensued.  And laughter. And singing. And dancing. And ridiculousness.

We ventured out to dinner and dessert, and managed the carb counting and all that goes with it.  Love those ridiculous girls...

And then a sleepover with Emily.  Short of a 2 am blood check, it was like before.  Which was good for Hannah.  And good for her friends.  And good for me.

A friend is a beautiful thing..

Hannah and Aly

Such a good day! SUCH A GOOD DAY!!!

The perfect antidote to saying goodbye to Grammy and Bumpa was an afternoon with Aly - the friend we met at the clinic.  We had lunch at Red Robin.  There was almost excitement to check blood and give insulin, since it wasn't by herself.  We even conquered a milkshake...

Off to the mall for some fun browsing, and the procurement of BFF necklaces.  Important stuff.

And then we went off to Aly's house to play.  The girls were just so happy.  Loved it.  Even better, we got to see Aly do a site change for her pump.  And that was the best gift ever...in that it wasn't so bad.  Not too bad to install, not too bad to receive. Hannah is excited -- even more so -- to receive the pump.  She's ever hopeful that there will be good news at our next clinic appointment on the 12th.

An afternoon of playing and giggling and plotting and planning for future fun.  So nice.

The party must go on....

Who doesn't love an April Fool's Day St. Patrick's Day Party?!?!?

Hannah helps our littlest pinata basher, Koa!

When you already have 70lbs of corned beef and a full case of potatoes in your garage, never mind the fact that your kids harass you daily about when THE PARTY will be, you find a way to throw the party. Even if you're tired.  Even if the weather is sketchy.  Even if you've been at a dead run.  Even if your house is messy.  Even if it's spring break AND april fool's day.

And party we did...   Somehow, the house got cleaned. The crock pots showed up.  The food got made. The yard got straightened. The pinata got hung.  The beer got iced.  I got showered. The green croquet jacket was located.  Green shirts were donned.  People showed up.  Food was eaten.  The weather held.  A good time was had.

Hannah even decided to spend the night at Jim's that night.  Which mean, for the first time since March 13, I slept through the night.  I'm pretty sure I was asleep before the last people turned off my street....

Annie!

We did it!   Tech week and show day - always crazy. No two ways about it.  Through some diabetes in there, and it's enough to break a girl!  

Tech week involved practice every night from 5-8, which meant being gone 4:30 - 8:30.  Which meant planning meals and snacks and insulin in a way that would work.  We did it, but mercy, are we glad it's over.

Show day itself was great.  It was a fun production, but not without adventure. Lights went down, and my phone started blowing up.  Literally, as the curtain went up, Hannah's blood sugar went down and we had our first "crash."  Thanks a million times over to the backstage mom who calmly took direction via covert text and helped Hannah.  Like many things on this journey so far, all I could do was laugh....  She also dropped right before the second show, but other than that, the day went smoothly -- much more so than I'd thought it might.

Hannah is having a hard time being away from my house right now...not wanting to go to dads...even with the lure of Grammy and Bumpa.  It's making everyone hurt.  I know it'll resolve over time, but it certainly adds a layer of complexity to the adventure we're on....

211!!!!

Best nighttime blood sugar yet! It would seem nighttime Levemir is working as hoped.

Whoooooooooooop.

What. A. Day.

We've been having high sugars...really, things haven't been "under control" yet. Which is unnerving, exhuasting, scary and overwhelming. But yesterday morning takes the sugar-laden, frosting-covered cake.

Hannah went to band, up at Truman. Calls me at 8...her blood sugar was over 550 -- more than 100 points higher than when we were admitted to the ER. Sigh.

What to do, what to do, what to do. Decided to have her give herself more insulin. Wait in the nurses office at Truman and then ride the band bus back to school. Test her numbers again at 9, 10:30. Thankfully when I talked to the clinic hey confirmed my thinking. That was a confidence builder for sure.

A day full of texts and calls to school nurses and teachers and Hannah. A new insulin protocol. An extremely emotional girl who was sure her bs level would land her back at the hospital.

Blood sugar came down. And of course went low. :). So we practiced what to do when blood sugars are low.

Our new direction with insulin means wonky (wonkier?!?) blood sugars for a few days. Timing couldn't be worse with Hannah's play. But I'm finding diabetes to be a heartless bitch who doesn't much care what else is going on. Ah well. We will cope.

Hannah is scared to go to band. Scared to go to school. Scared to go to play practice. Scared to eat. Here is hoping with move though this particular phase quickly.

Have a great day!!

Katie

School...

We survived with no nurse. We survived with no teacher. We survived a field trip. We survived our first low blood sugar. We survived really high blood sugars. We survived the PE teacher monitoring carb counts and insulin shots. We survived someone bringing cupcakes to school. We survived telling our friends. We survived checking our blood and doing insulin at school.

Not too shabby for the first 4 days.

Recommended...

Several people have recommended this book...

Cheating Destiny: Living with Diabetes.

2am....

It isn't that the two am blood sugar checks are terrible. Honestly, they're the best ones. Hannah is asleep, or sleepy. Even if she wakes, she is delirious and relatively happy. There is no fussing. It is the falling back asleep part that is tough. I have to be awake enough to know what I'm doing. Lights are on. I'm usually waking before my alarm because I'm afraid of overshooting it. My normal wake time is 430-5. If I'm not getting back to sleep until 3, it makes for some wonky sleep. And that's if I'm getting back to sleep. :). Since I'm blogging at 2:44, take a guess at how sleep is working for me :). In theory, this is temporary, though I've talked to several moms who said it was a long time before they could stop doing 2 am. It's one thing to be functioning enought to get through the days at home. I'm more than a bit nervous about what this is going to look like when I return to work.

JDRF

Went to a great session put on my JDRF. It was a lot to take in. I was surprised to listen to the questions of those a year in. It definitely sounds like this remains consuming and doesn't really stabilize for some time. Which is scary to me. I have a hunch that I'm going to renegotiate both my understanding of being tired and my capacity for getting things done.

Hannah was pretty emotional still today. Some of it is rational. Some not. It is really an interesting thing to try to parent through. I'm hoping that at some point, as her sugars "stabilize" that her moods will as well. Just in time for puberty. Ahahahahaha. I should just give up now.

Sometimes...

You don't know what the hell to do.

Save the date: May 12

South Sound Walk to Cure Diabetes
May 12: 15th Annual South Sound Walk to Cure Diabetes – Cheney Stadium. Join us for a fun filled day while we walk and raise funds for a cure!  Day of event festivities start at 7:30 a.m. and the walk starts at 9:00 a.m. Register today at walk.jdrf.org

Learn, Learn, Learn

Children with diabetes: http://www.childrenwithdiabetes.com/
Barbara Davis Center: http://www.barbaradaviscenter.org/

They have arrived....

The tears, that is. It has hit her that this is hard. And unfair. And painful. And until they find a cure.

And I can't fix it or make it better or more palatable.

We aren't sick...we are complicated. And tonight we have broken hearts.

It may have been a long day.

We survived....

Today was the first real day back at school. No mom. School nurse was there. Han did well. As I catch up on blog posts, you'll learn that last night nearly buried me. So saying "Han did well." is not something that was a given. We had some, um, drama around the use of our new insulin pen. Drama that may have resulted in Hannah looking at me as if I was an actual ax murderer. Not fun.

My day was spent answering texts from Han and trying to get all our prescriptions filled and crap (read endless supplies) organized. If you stop by, please know I may place a bag over your head to save you from witnessing the chaos that has descended.

Stopped to get goodies for a hospital care package. Next time you're at the dollar store, pick up 10-20 bucks worth of color books, puzzles and word find books for your local hospital. Han can vouch--kids are thankful.

Blog will be all discombobulated for a few days as I catch up on posts. So as you check back, read some of the history.

XO
Katie

A friend....

Wednesday was our first appointment at the diabetes clinic. Super nice people. Super nice.

It was a huge relief to get some questions answered. It is a very humbling feeling to suddenly not know how to feed your child. You leave the hospital feeling like things must be very regimented and precise. And in some ways they must be. But in other ways, not so much. Which was such good news. I think I'm getting a handle on things. Sort of.

But as we were walking out of our 3.5 hour appointment there was a sweet little girl checking in. Unlike most clinics, you know why everyone is here. We commented on her cute boots and struck up a conversation. Ali is also almost 11 and in 5th grade. Diagnosed when she was 4. Rocking the insulin pump since she was 5. Likes to read and likes to shop. Sound like anyone we know?

Phone numbers were exchanged with promises of a later get together. By the time we hit the elevator, we had a text inviting us to wait and have lunch with them! We had a great lunch and visit. The girls exchanged numbers--a diabetes friend is the newly discovered exemption to the "this phone is for emergencies" rule--and spent much of the afternoon texting.

Friends are awesome, but a friend who gets you, a friend with diabetes, that is beyond words.

No other words are needed.

I slept.

"diabetes people are cool!!"

Hannah came home to a box with a backpack STUFFED with diabetes loot. Including a bear with a medical alert bracelet. "Diabetes people are so cool!!"

A little diabetes art.

Artificial pancreas! Whoop!

http://www.cnn.com/2012/03/04/health/artificial-pancreas/index.html

Check out this research.

Sunday night...

Another good night. We got an earlier start on the day yesterday, so her last check was at 9, so we didn't have to wake up. 2 am was very similar. She slept from 930 - 6. Woke her up at 6:00 to stayon a better schedule for today.

Her sugars have been:
3 pm: 182
6:00 Dinner: 251 She was starving after dinner, and we pretty well ran through just about every type of 0 carb snack we had (jello, cheese) until Hannah rememebered sausage was 0 carb. And then there was peace in the world again.
9:00 Bedtime 280 = since she was getting 1 unit novolog, she ate a snack. still hungry.
2 am: 335 Slept through it -- even two sticks because she didn't feel like bleeding. those pointer fingers are fussy. We did not give insulin per instruction because they want to check on how Levimir is working. She would've only needed 2 units.
6:00 am Breakfast: 357 Gave her the 10 Levimir right away while I cooked breakfast and then she had 5 correct + 3 cover = 8 Novalog. Split the shots again.

Meeting with school nurse at 815 to get her okayed to go back to school with supervision. Visiting with Truman nurse afterward as Hannah was anxious about that -- no sense holding that angst til September. In between, calling clinic to likely get her Levemir adjusted because her nightime/breakfast levels have been high. This was expected.

St Patrick's Day Eve

Hey. Happy St. Patrick's Day Eve….hope you have your green planned out for tomorrow! Kids did both ask if we could still have the party tomorrow since we're home…all I can say is I am so glad my friends bullied me into postponing. I'm pretty sure I would've managed to food poison everyone in my delirium. Never fear - there are dozens of pounds of potatoes and 70lbs of corned beef in my fridge. The party WILL go on.

We got home around 2 today, and it was game on. Had our first lowish blood sugar with shakes right out of the gate. And neither of us died. Whew.

Hannah was missing school in a bad way, so we went up to visit a few of our favorites at school until the point at which I was actually seriously contemplating a nap on the floor at school while social Sally chatted her way around the building.

We came home, set two alarms for a 45 minute nap and fell promptly asleep. So it was an hour and 45 later when I sort of woke up and looked at my phone, a bit confused as to who I was, where I was, when it was, and why I'd overslept — especially seeing that the phone had been ringing and messages had been coming in and I'd heard nothing. We were in PM. Not AM. Alarm was set for AM Sooooooo…my choices were maniacal laughter or hysterical tears. I chose laughter and I woke Hannah up and we got right about blood sugar, dinner and insulin in short order. As I said to some of you, our imperfect life of diabetes has begun. And neither of us died. Whew.

Randomly our educator called to confirm our pharmacy. When she asked how things were going, I giggled (man, people, I am freaking tired!) and relayed the whole deal. And she agreed — what a huge relief that things didn't go perfect. It definitely takes the heat off a bit around being rigid and perfect in the execution of things. Rest assured I've checked the alarms for 10 pm and 2 am several times and am doing my level best to just stay up til 10 because I think at this point not much would raise me from sleep.

This weekend is kind of a get our act together time — some shopping (though H was online ordering a cute medic alert bracelet by 630 this am) for groceries and getting organized. We were home 10 minutes before Hannah had the labeler out. You would not believe the number of parting gifts/books/materials/supplies we walked out of that joint with. Never mind the places we're supposed to check out online and things we should google for.

We've got a good plan for this week — appts with school, with our new doc at the diabetes clinic and then just making the adjustment back to school. And so life goes on. Cody has a trumpet competition tomorrow, needs a haircut and has indoor soccer. Hannah's got play practice and the production of Annie in a few weeks. I've got work and our regular nonsense to get back to. Hannah wants to run You Go Girl and is already asking to sign up for the diabetes run at Cheney Stadium. She wants to go to diabetes camp this summer.

Our educator said, and I believe, we've got a whole new family of diabetes peeps and lots to do/learn/enjoy. And crap, it's only 9:17….I have no idea how to stay awake for the next 43 minutes :) I said it before, I'll say it again — thanks to all of you for your notes, texts, calls, etc.

Learn.Learn.Learn: JDRF

The local chapter of Junior Diabetes Research Foundation:

Website: http://jdrfnorthwest.org/
Facebook: https://www.facebook.com/jdrfnorthwest

Who doesn't love tulips?!?

A present from auntie em and uncle pat!

Beautiful girl

Everything began looking up once we hit the main floor.

First day...

Hi All! Whoa. What a day. Had thought I might be able to get an update out mid day, but, uh, no. Crazy town.

Hannah got breakfast. At breakfast time. And I'm telling you - no one has appreciated pancakes more than that kid did this morning. Breakfast was a teaching opportunity as we learned to check blood sugar, count carbs, calculate insulin and administer it.

We got visited by what felt like every department - social work, psych, education and teams of doctors and nurses...everyone is really awesome. Education was really about what diabetes is and what we do about it. Lunch, snack and dinner (and snack again (good grief, this kid has had these nurses at her beck and call)) more learning -- and really it was up to Hannah to manage things.

She did such a great job. She's pretty much adjusted to all of the things she needs to do...just a bit of practice pulling the insulin as it's a really tiny syringe.

Funny what hindsight does. Now that she's leveled out -- there are things that clearly were because of blood sugar. Life is strange.

Tomorrow and Friday will be more of the same - more practice more learning more questions and more answers. Assuming we know enough, we will go home on Friday. If not, we'll hang til we know enough.

In theory, Han will go back to school on Tuesday. Meeting with the nurse on Monday at school. She doesn't have a full time nurse - so we have to figure out if we have an adult who is willing to help verify her insulin calculations at lunch/snack times. If not, we may be facing a school change (which would be a real nightmare) so cross your fingers. At this point, I'll probably work from home a couple days next week so I can go up at lunchtime to work through things. But who the heck knows....that is a lot of days away and a lot of learning too.

Han seems to be coming to grips with people knowing. Had lots of visitors -- and she even did her calculations and insulin shot in front of quite a crowd tonight. Everyone seems very impressed with her maturity, smarts and her adjustment to all of this.

Thanks to everyone for the kind notes, texts, facebook posts and checkins. Trying to get back as I can - thanks for your patience. During the day we're pretty much full on learning all day. Cody is hanging with Jim, as is Daisy. Han and I are in pretty good shape. Thanks for all the offers of help etc. We're doing well and don't need anything really other than what you've all already been doing.

Night One....

Late night as Hannah was REALLY hoping her blood sugar number would come downenough to eat something last night. She finally went to sleep just before midnight blood draw, having come to grips with the fact she wasn't getting a bite of anything :)

Overnight they starting introducing sugar water, so her blood spiked again. Probably good as Hannah would've lost it to know her numbers went back up from 111 to 190. She did get some ice chips -- much welcomed. Savored, in fact. 5am read had her back down to 101. 100is the magic number. But 101 is close enough for juice at 6 am and there was major joy at that news and then back to sleep. Actual cheers when juice came in the form of a popsicle.

Food at 8ish wa likely the most appreciated food ever. Game plan for today: get the blood sugar number lower. Get some food. Keep the number controlled. Hopefully at some point today we will move out ofthe PICU. Going to be a pretty full day. Diabetes educator is going to land and then it's going to get hard core. Mostly for me then for her later I think. We've got to get her off the insulin drip and then she willstart learning to and managing her own insulin.

All in all good and getting better.

Welcome to the PICU!!

And so we begin...

3.13.12: A routine appointment with Dr. Starr to check out weight loss results in Hannah and I walking to the ER at Marybridge. We aren't given permission to go home and pack a bag...so across the street we go.

Everyone we see comments on her sweet smell...a sign of things to come.

Boo for horrible adventures in IVs. She was scared regardless, but my stomach was turned just watching. Two minute long mining adventures before they struck gold.

Yeah for Dr. Whackerly. Yeah for the lovely Mrs. Jones. Yeah for cell phone chargers. Yeah for learning we would not live a life without blizzards. Yeah for distractions.

A few hours in, up to the PICU - pediatric intensive care unit - where we would meet Susan and Will and the bald Dr. Harry. Where we would learn about the second iv and where we would thank the stars for meeting Susan, who was an IV therapist for 12 years before becoming a PICU nurse. Where Hannah would giggle and watch movies. And where she would beg for a snack, because she couldn't eat until her blood sugars come down. Where we had blood draws hourly. Did I mention the giggling? Will is crazy - and is going to be an AMAZING pediatric nurse. No visitors night one. No sleep either.