A little behind... but two 'news' for us.

First, wow, my blog 'keep up' abilities are flailing during summer! Yikes. I feel like we've been constantly on the go with little time to really sit down and come here with some updates for anyone who's listening (reading).

Thanks to all of those leaving messages, I do get them, I do read them, and I do appreciate them. I hope to start actually being active in replying too - but like I said, my time here is somewhat fleeting between the two kids right now. I really do love reading your responses and notes for us, though, so please don't stop if you have something you'd like to say!

We're moving into 'month 2' (just barely) with our Animas Ping.

As with most things diabetes, having a continuous 'great' streak doesn't always seem to work out. Though I genuinely do believe the pump has leveled the playing field a great deal, there are still good days and bad days. Sometimes consecutively one way or another. We've had a few more ups and downs lately, but I think her overall averages are more predictable now than they ever were before.

I'm becoming very comfortable with pump functions, with the ablities given to us like temp basals (where you can temporary increase or decrease the continuous 24/7 drip amount at any given time for xyz hours by xzy%). I think temp basals are helping Sierra get more sleep on those nights when I check her at 2am (which I do, every night) and she's a little under 100 and I want to ease off on her amount for an hour or an hour and a half to let her come back up WITHOUT waking her and making her coat her clean teeth with sugar pills.

Since our last post we've had two, I guess you could call them, mini-victories.

The first was our first bout with a fever. A high fever (102.5-103) for about 24 hours. Sierra caught hand food and mouth from her little brother and it was a little nerve wracking knowing ahead what was coming. But after reading some helpful forums filled with advice from other parents of t1 kids and sickness, I learned that to battle the high numbers she was facing as a result (fevers/dehydration cause highs, which can be really difficult to get down since you can't really force-hydrate a 4 year old all night) with - you guessed it - temp basals! Just in the other direction :) I upped her dose about 30% for 4 hours here and there and we did pretty well. We made it! She was a trooper despite eating being a little difficult with her throat being sore for a few days. I was really worried but she was great.

Our second 'first', was Sierra being a flower girl in a friends wedding last weekend! Not really a diabetes related first, but taking her to a wedding (just she and I) and guessing at buffet food carb counts (right? good luck!!!) and - yep - CAKE! plus dancing and the nervous energy of walking down the aisle by herself... well, turns out it was a good mix for her, because she stayed between 90-150 ALL DAY.

Awesome. So awesome. And seriously, how cute was she in her dress?

She forgot to throw her pedals but the fact that she didn't 4yroldFREAKOUT on not having me walk with her was pretty epic on its own. I was very proud of her, she was a great date that night.

And not to leave Max out, he's started picking up on our habits with Sierra (she asks "Can I eat now?" pretty much every meal after her pump 'motors' as she calls it), and is pretty consistently saying "I CAN EAT!?!?" He's very curious about her kit, but knows not to mess with it's contents, which I think is pretty cool for a 2 year old.

Speaking of Max, for a moment, as he gets older I start to wonder about what it will be like for him in our little family and growing up with a diabetic older sister. I think a lot of good, solid character will be built in the long run, hopefully a caring, able little guy. But I guess the mom part of me worries about the juggling of attention, and how to let him know and always help him remember in the mix of the craziness that he, too, is important and loved. I don't doubt we'll do our best to show him, but I also know how easy it can be to get lost in the day to do juggle with all there is to do for our little diabetic. It is pretty consuming, and it does require pretty frequent attention and it does make certain things 'different'.

I just hope he doesn't ever feel too lost in the shuffle. That'd be such a bummer. They're both special kids.

Those of you without diabetics may wonder if we worry about Max being diagnosed at some point.

Hell yes, we do! But, not overly. Though his percentage of likelihood goes up slightly due to Sierra's diagnosis, I think worrying too much about it defeats the now. We are doing an annual test for anti-bodies in Max (and myself until I'm 40) to see if we may develop type 1, and so far we're both clear. It's a relief, at least for now, to know we can focus on this big learning curve and life change without the additional child thrown into the mix. It's not unknown for some families to have 2 or 3 children with the same diagnosis, which is daunting but I imagine much like we have for Sisi - you just keep calm and carry on. What else is there to do? It'd definitely add more complication to our daily lives, but it's sort of like adding a second child. At least we'd know what we were doing and that's half the battle.

(Well, ok, SORT OF know what we're doing, sometimes it's still a huge guessing game, but hopefully a few years from now we'll have an even better handle on more situations as we experience them).

For now, though, we'll just go with the flow and keep our eyes on the horizon.

On Semi-Cruise Control....

So, despite my doom and gloom fears of making 'the big switch' to pumping life, I have to admit. I'm still skeptically waiting for the big bell learning curve I've been so terrified of. Not to say it hasn't been challenging here and there, and required a little new routine change and mini-lessons adjusting to another new normal, it has, but overall I have to say I feel somewhat spoiled - at least so far. I'm afraid to put that out there in writing, but so far - honestly - it's been pretty wonderful having a pump.

We had one failed set change (looks like the site got a small infection and decreased the amount of insulin making it in or something...), a few confusing mishaps, but mostly I've just been making basal dose adjustments as needed (or at least how/when I feel they're needed.. so far it seems to be working) - those are the 24 hour constant drip rates from the pump. All in all, we've primarily been hovering between 80-130. We have a few highs, fewer lows, and I am at the moment just grateful for it! I'll take it as long as I can and keep rolling with the changes as they come - and I know they are constant, so that doesn't really bother me with this new technology. Adjust, watch, check - voila. Easier to see the adjustment and whether or not it's working now than I could with the single, 24 hour Lantus dose every day (shot) instead! Really pleased as punch over here.

Sierra still loves her pump, but doesn't have the same mellow anticipation for set changes (as I expected would happen...). Doing a site on her tummy is more difficult now because she sucks it in or tries to turn away while we're preparing to get it in there... I get it, needles - scary - suckage, but she still prefers it over daily shots, so eventually we get her still enough to make it happen.

The removal of sites was a big issue until I recently discovered Medi-Sol thanks to a few fellow T1D parents suggestions. Magic!! I am in love with this stuff and so is Sierra. It works wonders for her fear of removing old sites, it's painless and fast :) Woohooooo!

We had a field trip (family field trip) up to the city (San Francisco) to visit the Academy of Sciences last Friday, it was fun watching her explore, with the ability to correct her, or give snacks and cover them without the big shot-to-do we were used to. No big deal! This was her in the aquarium section getting a check (finger poke/blood glucose test - that's what we call them, checks or pokes) - she's such a trooper.

It can't be easy being 4 in a super cool place but having to stop to get your finger pricked, but she sure handles it gracefully most of the time. I am increasingly and always impressed with my brave, strong little girl.

So... I guess this is just a check in for us, the pump is going really well - we're still figuring out the finer points (like swimming and unplugging, covering and not covering, and how to tell when sites are bad or if something she had just needed a little more insulin than other things....), but I feel very strongly this was the right choice and I am sure Sierra agrees!

First Impressions...

As of today we've been 'pumping' for all of 5.5 days. It's been a little trial (and some error), but the general swing of things seems to be going relatively smoothly compared to what I was preparing myself for. We still have glitches we're going to need to work out, set changes that will go array, and the battle over taking the old set off (baby oil + hot bath are our friends - unfortunately we do that at night time, which isn't ideal for a new set because we need a few hours to be sure it's working properly!). Overall, though, I really can't complain.

I especially can't complain because my little girl LOVES her pump. I mean literally, she loves it. She talks about it all of the time, and about how great it is. She shows it off. She is pretty careful with it (for a 4 year old), she listens to the 'rules'. She expresses how happy she is that she doesn't need shots every day any more.

So really, who can complain about that? Like I said - it's not all puppies and rainbows, I may or may not have messed up a set and done a new one a few hours later that was questionable (but probably fine, but who knows?), I may have given too much or too little here with insulin - but generally, her few lows have been less severe (we haven't had anything below 59! That is HUGE for us! Mostly mid-60s if they're lows now which is much preferred to 40s). We've had a few highs which we're working the kinks out on, generally night time has been a little easier - we just have to get the dosing right and we should be doing pretty well.

It's early. I don't feel like throwing it out of a moving car, smashing it with a hammer, or anything else crazy yet. I hope this sticks. I want to knock on wood and hope the kinks we're seeing in the process that we're trying to iron out are the worst. It's a little frustrating but I knew there would be weird changes needed and to just roll with it. Not be afraid to keep giving and just watch what happens and learn from it.

It's been nice for us, and great for her!

Frank told me last night that Sierra had a little conversation with him about it last night - something to the effect of:

Sierra: "Daddy I don't have any diabetes any more because I have a pump now!"
Frank: "Oh, well sweetie you'll always have diabetes, but we don't have to do shots every day now, and that's great right?"
Sierra: *thinks about this* "Oh. Well. Yeah I guess that's ok because I love my pump and it's ok as long as I get to keep it FOREVER".

Sad and cute all at once.  What an awesome kid.

And so the journey continues...

Tomorrow is the day.

That's right! It's arrived... our pump start date.

For the last week, Frank, myself and even Sierra have worn her Animas Ping pump during our one week 'saline' trial. Where we learn how to properly load, inject a set (more on that later) and most importantly, see what it's like to be hooked up 24/7 (oh, and how to use all of the fancy buttons and functions of course).

This has been a long process for me, mentally and emotionally, I think. A lot of internal stuff going on, but while part of me feels a little sad to see the tube coming out of her little bum-cheek, a bigger part of me sees a little hope. A little more freedom. More flexibility (for her AND us). More control over smaller doses to help us when 1/2 a unit is just a little too much with a regular shot, but finding the right 'in-between' is a guessing game at best.

So far, I'm pretty amped about this change. Sierra had her set put on last night for the first time, and she was AMAZING about it. No numbing. No moving, she was awesome. She even said it didn't hurt (wow really? I felt a little sting when I had mine put on my tummy!). She's had it on since and been very good about it. She carries the pump in a child-sized "spibelt". Sort of like a tight, small fanny-pack that is popular with runners to keep their stuff on them w/o it bouncing around with each step.

She didn't like sleeping with it on, which I get, there are clips holding it together that are hard, so we let it just hang out, and it worked (fingers crossed here, knock on wood). She's at school today... I'm interested to hear how it goes :)

Anyway... tomorrow is the big one. We go into the doctors office and they work on all of her numbers with us and we go LIVE. We put insulin in and she's "shot free" aside from the every 2-3 day set injection we have to do with the pump cannula.

Here's the skinny on sets... essentially it's a slightly larger needle with a small cannula (tube) attached to it. We do a quick inject (the sets come with something that does this for us w/ the press of a button, more or less) and then pull the needle out and the tube stays in, then we attach tubing from her pump to the set. It's awesome! One click you're in! You can remove the tube/pump attachment and just keep the set in (safely) so she can get in water or whatever - even though it's water proof there isn't any real reason for us to keep it on her for a 15-20 minute bath here and there. Nevermind the ocean - sand trap!

I'm excited for this next step, even while I'm cautious and a little wary. This is not the end-all-be-all, but it's the best I feel we have right now, and hopefully I'm right and the switch from MDI (Multiple Daily Injections) to the pump will be a positive thing for Sierra and our family.

Sadly, this will not diminish or stop my nightly checks (Yep, still doing that!), but I'll have some options available through the pump now that can hopefully keep me from having to wake her for any issue. She can sleep peacefully if she's high while I instruct the pump to give her a little extra insulin, or I can slow down her constant trip if she's moving out of her safe-range and night so that she doesn't drop any lower (ie: I won't have to shove grapes in her half-sleeping mouth!).

These are good things. I anticipate (and have been told in all truthfullness to anticipate) that there will be a rough few weeks. Some have said I may feel like throwing the damn thing out the window after a week or two - but to stay strong, to know it's just a minor bump in a lifetime of aid.

I'm going to try and go in with that. Know that I will probably mess up, but I will learn, and I will learn as fast as humanly possible. For Sisi.

Wish us luck!

File this under 'bonehead'.

Well, I finally discovered the tricky problem we'd been having about Sierra's "mysterious" non-sense making highs post-lunch time at school until evening, when she'd drop low all night.

Despite my husbands request that I try to find a day to go with Sierra to school all day to observe and see what was going on, I had somehow convinced myself that would be futile. Not just futile but I'd all spend all day looking for everything wrong and stress myself out doing so.

Wow, I was wrong. Oops? Lesson learned. It's my fault she kept having the ongoing issue twice a week that hopefully (at least the nurses tell me it won't) harm her long term at all since it was only a few times a week for a couple of months. Still, I definitely have the guilt, but it's mixed with great elation and happiness that we discovered a very boneheaded mistake on my part was essentially causing the problem and now it's 100% addressed and she's back to normal. Just like that.

So what was it?

Well... so let me back up here. When I first trained and sent Sierra back to preschool for a few months I did all of the shots, went over I thought everything (and probably 'mentioned' that there were 2 kinds of insulin, however - since they'd only ever need to give her short acting at meal times I didn't go very deeply into that portion). As they started taking over the lunch time shots I sent only her Humalog (short acting) insulin to school because there was really no reason for both.

Then I got a nifty 'wallet' made by a friends grandma for Sierra's insulated lunch box "D-kit" and decided to include both kinds of insulin because there was special spaces for everything and that way if we ever wanted to just go out after school pick up I'd always have things for dinner if we needed it (when she gets her 24 hour dose of Lantus).

Brilliant! So I just started sticking it in there.

Major flaw? I neglected to make note of this to the teacher who does her shots. I didn't point it out. They both just say "insulin" on them. No indication beyond that. So... despite the different colored labels one would probably innocently assume I just put extra insulin in there as backup. Maybe we were trading brands? The vials are similar, I didn't mention it, so it must not have been all that important.

D'oh on me. Big time.

Live and learn.... live and learn. This is a constant adaption process, I'm just trying to keep up.

I'm glad we found the problem, even if it took longer than it should have and unnecessarily stressed us all out more times than it needed to. Moving forward...

This is titled 'Frustration'.

Ah diabetes. Diabetes, diabetes, diabetes.

What else is there to say?

This has to be one of the most frustrating, challenging, non-conforming, difficult 'thing' I've ever dealt with in my life. I am sad. I am frustrated. I am sick and tired of the constant shift in blood-sugar tides that my little brain can't seem to comprehend.

None of it seems to really make sense.

Writing something off as "just a number" doesn't seem to be a good solution for me. I can't see a 280 and just say "huh, there it is. Let's correct it and move on". Especially not when my little 4 year old bounces around like a tennis ball in a heated match. I can't keep up with the constant shift her body is making. I could do the same thing, the EXACT same thing every day of the week and see different results, everything I think I'm doing right being completely wrong with maybe one or two 'sorta right' moments in-between.

 I feel under-supported by my Endo-team. I feel like I don't have anyone to really 'talk' to about the numbers, and once every 3 months isn't near to cutting it for us at only 7 months in the game. The process of calling a nurse line, leaving a message, HOPING they call you back the next day (and if they do - it's always when you're putting someone to bed w/o your phone, or taking that 2 minute shower)...  I hate that I don't know the explanations or fixes for the issues we frequently run into (different issues, just frequent issues in general), and it takes weeks to get any kind of real response formulated.

Sometimes I hate that there are apparently NO good answers - just 'that's diabetes'.

That's not a good enough answer, damnit. Not by a long shot. Not when your 4 year old little girl depends on YOU to care for her because she can't and whatever you may be doing wrong now, or not responding to quickly enough, or often enough to, can cause her great trouble down the road. How long a high is too high? What if she has insulin on board - LOTS of it - but she's not going down for some unforseen (non-carb related) issue? What if it's NOT sickness and she's STILL high despite double, triple, quadruple her normal meal ratio of insulin being given?

I feel like throwing my arms up and calling a time out but there is no such thing. My brain can't shut it off. I can be in a conversation about any one of a million things and in the back of my mind I'm still thinking about carbs and what caused this or that or what else we should try to do to fix her 'highs after lunch at pre-school every single time' issue.

I'm tired. I'm only 7 months in, and this is her LIFE, and *I'M* tired. Really? I know that probably as an adult and once her constant state of growing, hormones etc level out it will probably a little less crazy, at least I hope for her it will be, but I'm already just burnt out and it's only the beginning.

I don't like not having the answers I need. I don't even know where to try and find them half of the time, and that's almost more awful.

Yeah, I'm that mom right now. I'm venting. I'm feeling sorry for us while still trying to figure out how to successfully 'fight back'. It's a constant struggle, it's a small breath of relief if we get a day, or even half a day of 'normal' numbers.  I feel like that's rare.

I'm still waiting for insurance to approve a pump we should clearly have. I started the process, which I was told typically takes 1-3 weeks, about 2 weeks before we left for Maui. So about close to 7 weeks now, we've been in this back and forth BS process. What a joke. And do these people have anything but FAX machines? Who has a fax machine! Get with the program! Welcome to fricking 2012.

I have a 2nd 'pump start' appointment for the end of June and I had better be able to keep it this time. I already had to move it back a month once, I don't see what the problem is here. Pretty standard process, we meet all of the criteria. It's just irritating. I feel like calling someone over there and asking if they'd like to be the one responsible if my child ends up having a seizure or in a low coma because of their stupid lazy paperwork process. She's a real person, and I want her on a pump to help try and achieve better, more manageable results. I'm starting to see the uphill battle we're all going to face from here moving forward. It's bleak, people.

Sorry for the downward post here, but it's my blog and this is where we are.  Add in a 2 year old who has found his voice (his voice mainly involving screaming, yelling in frustration, or crying hysterically over something) and uses it more than your average bear and I have to admit I'm at ropes end right now. I just need something to be easy. Just for a little while. Even just a little easy would be ok. Really.

One of 'those' moments.

When I say 'those' moments, I am probably typically referring to a time when I am remembering what it was like before diabetes. And it's funny, the little things that you take not necessarily for granted but just genuinely shouldn't and wouldn't have to think twice about under normal healthy-life circumstances.

Mothers Day for some reason felt bigger to me this year. I added a new badge (if you will) to my list of mommy duties... a pretty major one. Not just your bumps and bruises nurse badge, but the external pancreas badge. It's been very hard fought, and sometimes I still fight for it, but it's been a big deal in my mom-world life. No, I'm not trying to toot my own horn here, I'm trying to celebrate the ability to adjust and evolve! As a person, as a caregiver, and as a mommy to a little diabetic girl who really does need me every single day right now.

This is a big load to bear, worth it - obviously, however daunting and all encompassing it can be at times. I remember last year for my 30th birthday my very dear friend, Bethany, and I took a whirlwind 3 night vacation to Scottsdale for a spa weekend getaway.  We joked about making it an annual getaway (or at least making AN annual getaway!). It was fabulous! So much has changed since then. As much as I would love to get away I'm not sure how easily I could do it (and I don't mean logistically... I mean I don't know that I could do it).

Anyway, a wonderful day was set for me. I felt so appreciated and honored, so loved. I had time off (Yay!), I got hand picked flowers (double yay!) and a thoughtful card from my wonderful husband with a special surprise inside. In the afternoon we decided to go downtown to check out the antique fair going on - a very mothers day-ish thing to do, I was excited. Sadly, Sierra wasn't feeling it. Not because of any diabetes related things, she was just totally being 4. Ah 4. We lasted about 5 minutes in the fair before dragging her to gap to get new sunglasses because apparently it was too windy, and too bright. And she needed water because she was dyyyiiinnnnggggg of thirst right that minute. So we decide to go to a local pub, grab a beer and a water for her and just relax before dinner.

Here's the 'moment'. We're both hungry. We don't have her insulin on hand because it's a short outing and she had a snack before we left - and we're eating dinner in 30-40 minutes anyway. Sadly... the option to buy food for ourselves wasn't going to pan out very easily. What do you get? Theres nothing on a pub menu that she could nibble on (and what 4 year old wouldn't want snacky greasy foods placed in front of them on a platter anyway?). And there it was... ahh the blissfully easy days of pre-diabetes. Enjoy it folks. The ability to grab a snack for you and/or your kid at will without having to hunt down olives or string cheese or straight up meat is a time treasured thing I miss. Thankfully once we are on the pump we can work around this easily, but on our current program it's a little bit of a crappy reminder.

Anyway I digress, I don't know where I'm going with that. I just mean to say a lot has changed for all of us. Especially Sierra. Hell, our whole family. I wonder often how this may effect Max, I mean for better or worse he's along for the ride. I wonder about her future, hoping and thinking of a bright spot where she will be everything she wants to be in life. I wonder about her additional challenges, her relationships, her learning, the effect her lack of a functioning pancreas.

I think about all of these things on a fairly regular basis knowing full well I can only do what I can do, and so can she. It's still difficult to wrap your head around sometimes, even living it day in and day out.

These moments pop up now and then and really all you can do is shrug, give a sad smile, and move on. So I have to read every label, count every goldfish and grape - it could be so much worse. I'll take it. And she'll be fine.

Now if our pump would just arrive already...