On it goes.

I just wanted to throw an update out there on us...

We're still definitely slowly moving out of the honeymoon phase (at least in my opinion). We've upped her Lantus (basal) nightly dose from 2 gradually to 3.5 where it seems to be working. The ratios for meal times is a constant battle but we're learning to just work with it. 3 days of consistent numbers (highs, lows, whatever) seem to be my comfort zone for 'making a change now' decisions. Just to rule out any random circumstances that may occur day to day.

If any one is curious about how we track currently or what that looks like - here's an example of my log chart for Sierra:

Lovely right? Well, it makes sense to me which I figure is mostly what matters. I printed and laminated two of these sheets and use a projector pen to write in #s, scan a copy of that timeframe when it's full, then wipe and reuse. Green of me, right?? I used so much paper those first few months that I was slightly digusted by it. Plus who wants to keep a bunch of papers around for who knows how long? Now I have a folder and voila, diabetes info goes there. Genius.

What would be easier? Oh, yes, actually uploading the numbers at least directly from the meter and using that companies software to make graphs and see trends. That'd be pretty awesome. We do have a windows laptop that works... well, mostly works if you wiggle the power cord *just right* it charges, otherwise it's sort of a pain. I love my imac, but for some reason the meter company refuses to make software that's compatible. Big shame if you ask me, I'm sure plenty of diabetics use Apples :P

I like this log because I also track carbs, insulin doses etc. I can easily see trends and adjust as needed. For now it works, when we move to the pump I'm not sure what it will look like or how I'll choose to log then, but we'll figure out that piece when we get there.

I think we're still leaning towards Medtronic even though I'm 50/50 between that an Omnipod. The pod failures I read about are a little troublesome, but so are the tube kinks and air bubbles etc for the Medtronic side. No system is perfect, I figure any system is probably a little better, and a lot less archaic than what we're doing now. I do like that Medtronic is on the cutting edge,  so there's that. We have some time to think about it because we've opted to hold off on getting the pump thing going until after Maui. I'd feel more comfortable really having a good grip on it before we change our surroundings and vacationing/eating out etc. That's hard enough to combat with a known system and we probably won't have our pump even if ordered today for a good 4-6 weeks, so that leaves only a week or two left before we hop on a jet plane to paradise. I think we'll wait until we get back.

We've been struggling a little bit with some highs and lows at school, I'm working with the teachers to try and figure out what the problem spots are. I almost had it yesterday! Sadly, I went a little too cautious on her lunch dose and she ended up high again for dinner. I think we've adjusted appropriately today and am really hoping that pans out. I know how she can be when she's fluctuating and am forever grateful her teachers get it and are willing to be patient and work through it with her. It's like she's a different little person sometimes, and I know blood sugar swings can do that... it's frustrating for all of us but you accept it and do your best.

I'm curious - those with little ones in school, do you have different dosing techniques? We're at totally different ratios for breakfast and lunch on school days - I'm not sure if it's activity level, excitement/adrenaline differences or what - but she had some pretty scary lows a few times a day recently and it scares the crap out of me! Thus the adjustments of course, but it's hard to get right. Our Endo said it's not uncommon to have different ratios for school days... do you think that rings true in your experience?

Once again if you follow all of this, thank you for reading. This one isn't terribly interesting but I'm just trying to keep you in the loop. Have a great week!

Rollercoaster Ride of Life.

You know, for the most part (for me) when Sierra was diagnosed obviously the first few days were a huge, huge emotional turmoil kind of thing. Obviously right? And in the weeks (and month-months) following as you adjust to the new lifestyle and what is needed to try and help your child manage this disease there are sparks of that grief that sneak in here and there but you take it, swallow it down after a bit then move along your 'merry' way and continue to try to accept what is and what will be.

Last night I didn't have a very accepting moment, I don't have them often - but I couldn't really stop the upset after a particularly ridiculous day of numbers. She started in the 200s, went to the high 400s, dropped to the 40s (TWICE), hovered between 100-250, then back down to 50. It was a confusing, heartbreaking, frustrating day for me. And I know it probably wasn't easy on my little girl, either, even though she was at school and seemed to maintain perfectly find spirits and energy despite the tennis match going on in her body.

I need to figure out what went wrong. What we're miscalculating or what to change on school days or how to do it. How to KNOW what the hell is going on without really knowing. Adjusting. Changing things around again until we get it right while only having a few ideas of where to start because the process is still a process. What I mean by that is that I can't just have people test more frequently and fix or change things all at once. Sure, you can test every 30 minutes but that doesn't mean your numbers are reliable - sometimes you still have active insulin that could drastically change your number over the next 30-60 minutes still, and sometimes you forget that or you're so freaked about a ridiculously high spike that you want to correct ASAP because DKA is horrible and you don't want that. Then you get a low and you are punched in the gut with the remembered knowledge of why you don't do that.

And on and on and on it goes.

Frank came home from the pump class with a great amount of information. The leading thought now is no longer the omnipod (though it's possibly still being considered, we need to discuss more over the weekend) - but the medtronic mini-med. I still have a really hard time coming to terms with the idea of a tubed system (I'm irrationally paranoid about the whole infusion site/set and tube kinking stories... I'm afraid I'll mess up whereas I feel like the omnipod is a little more foolproof - at least a little more anyway). If I'm being honest I'm having a suddenly really hard time accepting the fact that my daughter will need to wear things on her body for who knows how long. Tubes. Needles stuck in her for days. I saw her little finger tips yesterday in the right light and already see the soft flesh turning into slighty firmer, slightly yellow tips with tiny little dots all over them.

It breaks my heart. I know these things are keeping her alive, keeping her healthy and able bodied but it's still so, so heartbreaking sometimes. The pump and technology that comes with it should be EMPOWERING for me right now, but it's not. I need to let go of this, of these minor technicalities - anything is worth keeping her healthy and with us, what difference does it really make if that means she has pockets sewn into the back of all of her tshirts and a tube poking out of her bottom? I mean really, in the big picture - does it have to be this huge life altering thing?

I guess not. But I need to grieve some more apparently. And last night and this morning were one of those times. I'm struggling, but as always I'll pull it together and keep moving forward. I just needed a little outlet. I'm not some stone being who isn't emotionally effected by the suckiness of this damn disease. I hate it with a passion, I hate it for me - I hate it for her, but I need to find a place where I move myself back away from remembering that hate and working on figuring things out again. Making her numbers at least reasonable. Dealing with what needs to be done and doing it and not looking back.

I guess cereal is added to our current list of "don't know how the heck to combat" foods. Pizza. Cereal. Mac n' Cheese. Probably rice, but who knows. Grapes sometimes - too. It's not the end of the world but every single thing I take away gives me a little shot of grief and a reminder. I'm sure as we continue to get deeper into this it'll be easier. More systematic. I'll get stronger, less emotional.

Actually if I'm being fair I haven't had a little meltdown like this for at least a couple of months.  I'll get past this one too... I just think sometimes it needs to happen. Part of the process.

I'll be fine. She'll be fine. I may never like it, but I'll live with it and I'll keep trying to redefine what my 'best' is. My knowledge here is power and my ability to make things happen, but I won't ever be perfect. There's no such thing. I know we'll probably have days like this again, I just hope not soon. Those lows are scary, those highs are frustrating.

Back to the drawing board again. It's hard to believe we've only been doing this since late October.  Apologies for the woe-is-me post. But I created this blog for the good the bad and the ugly. Sometimes the ugly will be here, and if I'm going to be honest with myself I may as well be so here. Take the grief, own it for a little bit, then let it go and move on, because there are so many good things going on out there for diabetics.

Trying to remember that.

Pizza is the devil.

Well, at least it appears to be for our diabetic daughter. This is a pretty massive bummer, not that we eat pizza a lot, but it's very hard to work with the delayed (and LONG running) highs that are a result from pizza (and mac n' cheese) eating. I'm not entirely sure what my excuse is for letting her have pizza, I probably really should know better, but all of her friends were having it - it was a great play date lunch, she was stoked... I guess I felt bad saying no this time. In the future I'll plan ahead, I know my friends are on board with whatever I/we need to do to help avoid issues with her #s.

Hopefully what I keep hearing about the whole extended-bolus pump magic will keep us from having to pretty much avoid these things all together. Think of all of the birthday parties she'll have trouble with! I don't want to be a food-nazi but pushing 300 or the high 200s for HOURS after this evil food monger is not my idea of 'worth it'. Too stressful, and she's perfectly content to eat PB&Js every single day for the rest of her childhood if you ask her about it.

So, lesson learned. Again. I sound pretty thick headed huh? I really should've known better.

In other positive news - Sierra's getting much better at the 2am finger pokes! She just lazily hands me a finger most of the time without sitting up these days. Not every night. She likes to tell me before going to bed that I can't forget to come check her and "I'm going to be hungry for a snack too". Right. Cause I can't WAIT to feed you a snack at 2am, kid. Sheesh. Usually she forgets, often she's too tired as a result of vehemently refusing naps to stay awake long enough for me to find and bring her a suitable snack. Thank goodness for small favors.

I'm excited to hear about the information Frank brings home from the pump class tonight... and then find out what our next step is (so I can make it happen uberfast).

There isn't a whole lot else going on here at the moment, no new amazing revelations or major happenings - I guess no news is generally good news, but I'm not ignoring updates just because. I'm sure there will be plenty going on as we go through this pumping process.

Oh, and we still haven't gotten our authorization for additional strips yet. It's been going on a month. Really people? Really?

'Normalcy'

Finally! Thanks to a few days of antibiotics, we have some 'stable' numbers again in Miss Sisi. That was a long two+ weeks, and I'm so happy we're currently out of that trend. Even her night numbers have been fantastic (in the 120-150 range). Actually last night we'd had such a nice trend we decided to try the whole "test at 11pm and let her sleep most of the night if it looks good" idea. Now in theory, this would've worked like a charm. Her number was slightly high but I knew it would come down after her snack finished working it's way through her system.

Ahhh, the promise of sleep!!

Naturally that means I couldn't sleep. And then something crashed in the house (we have no idea what it was, maybe the cat knocked something over in the garage) and it woke Sierra at 3am and scared her, so we tested again (170 woohoo) and then she stole my spot in our bed and I was banished to her Rapunzel draped twin bed. Nah, it's ok, her bed is actually pretty comfortable and being squished into a queen with my 6'3" husband and a wiggly toddler isn't my idea of a good time anyhow.

Regardless, I'm still just happy she's found (we've found?) some sense of normalcy and accuracy with her dosing again. That in itself is a huge deal.  She's also been a little better about getting her shots, still sort of squirmy and stiff but she doesn't whine about it daily any more - yes!

Frank is attending a pump class at the hospital tomorrow afternoon, it's step 1 in a process that has who knows how many steps - but it's one in the right direction either way. I'm interested to see what he'll report back to me so we can start this process. There's quite a bit on the road map for us over the next couple of months, and this is just one piece of the pie.

Max is turning 2, we have a trip to Maui to plan (sort of plan.. I guess his company did the bulk of it - even better!), and figuring out our dog situation is on the agenda. Not that this means we'll have one in a few months - but let me expand.

My dog of 13 years, Luna, passed away a few months ago. She'd been with me since I was 18 and was a doll with my kids. Sierra misses her very much, and talks about her constantly. She actually took her death very well ("Oh, wow, well, I'm sad. But dogs get old and sometimes they die. It's ok."), but within a day or two she was already proclaiming that we were going to just go ahead and get a NEW black dog named Luna. I told her maybe when she was 5. She's holding on to that for dear life. Yesterday she drew a picture "for the dog I'm getting when I'm 5. I told everyone!". Oooh man.

We've been looking into the idea of what is called a Skilled Companion Diabetic Dog. We found the program through earlyalertcanines.org and wanted to jump on it! These dogs stay in the home but help detect highs and lows (primarily lows) in diabetics by scent. Amazing right? Dogs are so cool. Anyhow, the diabetic in question needs to have been diagnosed at least a year (October for us) and you jump through several hoops to make it happen. To this point, we felt like we could do that. They all seemed achievable. Until I dove into the 'one week of required training' part.

Now, I'm more than willing to do training - unfortunately, JUST ME leaving this household for one week sounds pretty much impossible. Frank would need to take an entire week off and day to day is sort of my territory. That's a lot to just pass off for an entire week to someone who is  capable but doesn't DO it every day. Moms out there you'll know what I mean. Frank's no rube, but he doesn't do the grind - I do - and it took me a while to get here myself.

So now, we're not too sure. It may just not be in the cards, as amazing as the program and dogs sound. We're now tossing around the idea of adopting a career changed Guide Dog. That'd be pretty sweet. I primarily want a non-puppy, well trained dog. I have two kids, one of which is diabetic, and the last thing I need is an unruly baby-like pup who requires a ton of training and babying. A big dog we can handle, I can handle, and the kids are big enough to take walks with me and help fill dishes. Either way, at some point it will be nice to have that presence in our home again.

Anyone out there have experience with a diabetic dog? Should we not be tabling the idea just because of a week of hardship? I don't want to be lazy, but I don't want to get us in over our heads, either.

'Til next time, thank you for reading my ramblings!

Winter Blues

I thought our high days were slowly going behind us (for a bit, anyway) but sadly I was mistaken. A day after we had a few normal numbers they came back with a fury. They're still here, actually, and after a few rough nights and a visit to the doctor we found an ear infection to be the culprit.

It's interesting when you have to really think about giving your young child tylenol or advil in childrens liquid form due to the whole high-fructose-corn-syrup sugar factor. I mean, we were up for 3 hours with a screaming toddler complaining about her ear and about half way into it is when we pulled out the liquid aid - she felt a little better but bolted up a good 150 points (to 280), and that was pretty alarming. We have a kid wide awake and freaking out about her ear hurting, so do we break the news that she needs to calm down and get a shot or let it pass? We chose to just let this one go when she finally agreed to actually go back to bed around 2:30am.  That was two nights ago, and all I can say is thank goodness for antibiotics. They may not be helping her random and weird highs - but she definitely feels better (and actually SLEEPS).

Sadly I have to say whereas in 2011 I feel like we had decent control in place, we haven't been off to the best start here in 2012 in managing her numbers. Or at least, her numbers have been all over the place and we feel stumped on the whole tracking it down and fixing it part despite joint efforts. It's pretty frustrating, actually. I expect at our next clinic appointment at Stanford we'll be met with a high A1C than her current 7.2.  It sort of feels like failing a really important test to think about that number changing. Maybe it won't, I'll try to think positively, I'm just a little burnt out on the current roller coaster of numbers right now.

Max and I both were confirmed with sinus infections of our own today, so our family isn't in the healthiest spot imaginable - however, our kitchen looks even MORE like a pharmacy than it did before our antibiotic additions (d-moms and dad's you know what I mean, I seriously can't believe how many bags we come back with monthly from the pharmacy!). I think, despite this being the first month we've used the new pharmacy, the lady that worked behind the counter this week already knows me. She even mentioned Max was looking happier today. I've been there 3 days in a row between diabetes supplies, Sierra's ear meds, and now mine and Maxs. I will say I wish they had a drive thru :P

Next week (the 22nd) is our pump class date. Frank is going to the class and then we plan to move as quickly as we can to get the process rolling. My earlier optimism about this process is faltering after still not having approval for additional meter strips nearly 3 weeks after asking for it. Despite hand holding the insurance agent we work with directly and Blue Shield, and passing their information back and forth with the diabetes educator nurse at our hospital - well, supposedly things were faxed a week ago and I have yet to hear anything else about it. If it takes them a month to approve more strips (the CORRECT amount because 200 is a joke), I wonder what the pump supplies will be like.

Ah well, we're on the road so we're staying here.

Picture Proof!

See? I told you she'd freak out. Image #3 is classic, I am so happy I captured this on 'film' (so to speak). It went from "Yes mom? Wait... what! OMG A LOLLIPOP?? REALLY? It won't make me sick? YAY!" Awesome progression, she was so thrilled.  Happy Valentines Day indeed! The candy is from Caring Candies and is made with an all natural beet sweetner - 7 carbs for the 'lollipop' but gluten and sugar (and preservative/artificial anything free). Stoked.

And in other news - I spoke too soon (was it just yesterday?!?!?) about being back to normal. We're pretty trapped once again in the low to mid 200's. Ugh. Honeymoon, I believe, is most certainly over. We'll be talking to the doctors again tonight to (likely) increase her Lantus dosage again and talk about her other meal ratios too. She definitely needs more.

We're going to pick up a new prescription of strips (literally in the nick of time) that will hopefully actually cover a full month this time. Wish me luck on this run, I need to throw in a last minute sharps container (yes we're FINALLY letting go of the thick tupperware and going legit) while I'm at the pharmacy with two kids in what is bound to be a 'valentine fairy threw up here' wonderland.  I'll need all of the luck I can get!

Happy Valentines Day, everyone, and heres to finding little ways to make our kids smile in the face of anything.

And on it goes

It's 2am. The alarm that startles me awake says so, and unfortunately I need to listen.

I take a minute to lay there and squeeze my eyes shut tightly hoping for a moment that this will require very little time (or 'waking') on my part, then suck in a deep breath and swing my legs over the bed. I make my way into Sierras room and she sits up immediately, and in a very unhappy voice lets me know that she's wet through her diaper over the bed.

Cut scene here to one of my not so proud parenting moments. I got frustrated, threw a mini-whine tantrum because I'm pretty sick, really tired, and so not prepared to strip a bed with it's 40 stuffed animals and books hiding under covers. To strip my daughter, her diaper, wipe her down, find clean jammies (which was a task, because being sick removes what little desire I normally have to actually complete a laundry cycle), and re-make the bed - THEN test her.

After trying to reel it in, because my complaining about how I'm sick, and really tired, and so disappointed really isn't going to accomplish anything (and I was rightfully berated by my husband for losing it this morning, I'm the grown up and she couldn't help wetting through her diaper after chugging water before going to bed), finish the task at hand, finally get her tucked back in - and bring out the gear for a poke.

Poke... wait... reading: 321.

Really? REALLY? I sadly explain to her that she's high, so now on top of it all, we need to do a shot. She was remarkably fine with it, and said we had to do arm. I agreed.

Was it the delayed reaction from the mac n' cheese she had for dinner? She was only 72 at bed time so we had to give her a little bit of milk and a couple of animal crackers. It just doesn't seem likely that this pushed her over the proverbial edge. She takes her shot with plenty of grace, cozies down into her now clean and dry bed, and asks for her usual back rub and kiss on the cheek.

I'm by now wide awake (of course), stewing at the number and the whole event in general - disappointed in myself, in needing to give her a shot, in really the whole 2am experience.

I'm by no means perfect. I am not supermom, and when I'm sick I can pull a tantrum with the best of them. I'm not very proud of my reaction last night, but I'm human and I'll move on. Sierra has, I can too. Now it's just a matter of trying to resolve what the heck happened and how to try and face it off ahead of time in the future. That's the real struggle. That's what kept me up until nearly 4:30am before finally getting my brain to shut off long enough to get back to sleep.

I worry about her sleep, and the lack of rest I know she's also dealing with. It's not just myself, or my husband suffering from less sleep because of this disease. While she may be able to fall right back to sleep and not deal with the extra wakefulness that usually follows me, she's still tired. Some days I see it in her more than others, and it bothers me tremendously. Our endocrine (whom I actually adore, I wish the staff wasn't so overrun so they could be more helpful on a day by day deal when needed - but he and another of our team are really wonderful doctors) is urging us to try to find a way to get to a point where we don't need to check her at 2am EVERY single night. His concern isn't just for us, it's actually for her. And he understands why we do it, and he understands that sometimes she's high or a little low and we catch it - but he also understands at her age what lack of sleep and proper REM cycles can do to her over time. Not just diabetic-wise, but just as a little person.

How do I balance where to take a night off and check at 11 instead of 2? How often? When will I ever REALLY be ok with that? When will we come to place where I feel that her sleep is just as important as catching a possible high or a little low? Or a big low?

These are hard questions for any diabetic parent. Part of me strongly believes that sleep is just as important as catching these things, because generally we are careful enough to avoid the dangerous lows. But then there are those nights we find her at 300. Or 60. We can never give up the 2am check completely, but when can we dwindle it to maybe 4-5 nights a week? 3 nights a week with a bed-time check when WE go to bed instead?

I don't know. I really hope we can get there, because I think we honestly could all use the rest at this point, and I know it will effect us all either way we do it.

Valentines Day

It's been an interesting week of numbers, to say the least, but I think we're re-finding our normalcy (well, as normal as it gets, which can also be somewhat sporadic but you take it!) again. Whew, highs averted. We've had a few lows, now, which are a little more worrisome but generally resolved as easily and quickly as pouring 4 ounces of juice.

I think we still have a few adjustments to make to her dinner time ratio of insulin to carbs, because she's frequently high at her bed/snack time and I hate breaking it to her at 8pm that she needs an extra shot on any given day. She's a trooper but I can't help but think she probably finds this incredibly unfair as it's not typically the 'norm'. Ah well, what can you do?

The pump class is looming around the corner and I'm anxious for it. I want to get this thing, figure it out, and start applying it! I know that we'll have struggles with a pump - some new, some similar to now, but all in all I just know she'll do so much better with that system in place.

In other news, Max and I have had quite the cold off and on this week. I think Sierra's numbers show she went through it already, Max is always hard to read because he's at that special age where he flips his lid over everything he can't quite conquer yet (like building a tall lego tower without tipping it over halfway up, or not being able to line up the train tracks properly etc). Is he sick or just a spazz? Probably both, but I love him anyway. Here's a little photo to melt your heart (or mine, but it's my blog so sue me)

This warm, cuddly moment brings me to Valentines Day. Or should I say chocolate, flowers and treats day? At least for kids.

It's funny to read about parents being hyper-anal about sweets coming to school, or trying to push veggie trays over cupcake. Yet, even with a diabetic child I have no desire to try and put these strict rules on the diets of other preschoolers on what should be a fun, special holiday. I think moderation isn't such a bad thing, and letting the kids have their fun once in a while isn't going to kill anyone. Part of me feels a little sad for Sierra, not being able to really partake in the full realm of this silly little holiday, but I know she'll persevere. In fact, thanks to a few very kind mom-friends, I'm loaded with a few new 'valentines' gifts for Sierra! One of which, happens to be sugar free, all-natural (non-artificial anything) lollipops.

She's going to FLIP OUT. No really, when I tell her on Valentines day that she has a special lollipop just for her that won't 'make her sick' - she is going to freak out!

I have to explain this briefly just so you can understand. For some reason, my girl is enamored with lollipops. Chocolate is so-so, gummies are ok, lollipops are heaven on earth. When we found out she had diabetes the cosmic joke was that it happened one week before Halloween. We had to very carefully explain to her that it was ok if we went trick or treating, but instead of eating the candy (aside from 2-3 pieces she could pick out and have one a night) she could trade for the coolest present EVER (Lion King on DVD). She was all for it, but I have to admit it made my eyes tear up when an awesome neighbor of ours momentarily lapsed and offered Sierra a lollipop, and Sierra, my bright - recovering little peanut - responded "Oh lollipops! Oh I love lollipops, but I can't have that. They make me sick."

:|

Yes, my 3 year old said this.

And she's been talking about being able to have ONE lollipop when we get the pump. How cute is that? I'm not sure why she thinks lollipops would work just fine on the pump, and sure maybe once in a while they could - but it's pure sugar, really not ideal for a diabetic. But she does, and now we're armed, and I'm so excited for her I could spit.

So, I'm looking forward to Valentines Day now, not with sadness but with a little hope. There are ways around all of it, and it doesn't have to be a big deal. Christmas wasn't, Halloween wasn't, and maybe that will change or shift a little as she grows and understands a little more of the dynamic, but if we can prep her now and not deprive her I think we'll all be ok.

Happy Pre-Valentines Day, and thank you - friends - for the wonderful support of my little girl and helping her celebrate in a little different way :)

Is the Honeymoon Over?

That's the question for today. The doctors say maybe, we say maybe, diabetes says "I don't give a rats * what you think, honeymoon schmoneymoon - I'm just doing my thing".

For those unversed in the diabetic lingo (as I blissfully was 5 months ago) - the term 'honeymooning' is used typically for newly diagnosed diabetics who still have a partially functioning pancreas. Like 10-15%. In the beginning when you're trying to figure things out after getting home from the hospital, this is a bit of a joke. Ok, it's still a bit of a joke because while, sure, you need less insulin when your body is in the 'honeymoon' phase, this ain't no mexican riviera cruise, either. Honestly there were many times when late at night my husband and I would sit on the couch at night, frustrated out of our minds, wondering when the stupid pancreas was just going to die already! Then we could figure out what her doses need to be instead of finding her randomly low because it decided to secrete a little extra insulin here and there after we'd already dosed her via syringe.

She had a cold come up over the weekend, and we noticed highs start slightly before that - which I'm told is pretty common. Diabetics tend to have really wonky readings when they're getting (or are) sick. Great! Well we're about 4-5 days in now, she seems to have passed the worse part of the mediocre cold, and yet she's having her highest numbers since we've brought her home today.

So we ask again... is the honeymoon over?

If it is - ok great, we'll struggle and adapt and move on. She'll need more insulin but big deal as long as it actually works.

Tonight, for example, after a few random highs (like a 345 out of no where at lunch time) she seemed to be doing well for the second half of the day. We spoke to the doctors and decided to up her Lantus (that's her 24 hour basal dose insulin) from 2 units to 3 units. This should hopefully help lower her #'s throughout the day in-between meals and at night. Theoretically, anyway. Great! We go into dinner optimistic.

Home made english muffin pizzas, they consist of whole wheat english muffin, cheese, and a little bit of pizza sauce with some severely mashed up veggies hidden underneath for good effect. And some milk. Great! We're looking at 38g of carbs if she eats the whole meal. Gave her the shots required, sat her down for dinner.

Fast-forward 2 hours later. Yes. 2 hours. She was still chewing on pizza muffin. Which she's loved before, mind you, but she's nearly 4 and her likes and dislikes change faster than you can say 'EATYOURFRICKINGDINNER'. I substituted more milk, took away more muffin, and finally after she got MOST of 1/2 of it down, plus the extra milk, called it quits.

Believe me there are times I LONG for the days I could legitimately threaten to send my daughter to bed without dinner if she refused to eat it. Sadly, that is not a viable option with a diabetic who's already had her insulin shot and needs to consume carbs or face a serious low blood sugar.

Funny, that's what you'd expect, anyway. But no. Not tonight! Not this week! She doesn't even consume the right amount of carbs, yet when we test her before bed she is a whopping 422. I think my stomach went into my throat a little. 422?! Whaaat????? I was stumped. Frank was stumped. Sierra was high and we couldn't explain it. Did the shot go haywire? Did she randomly find 40 gummy worms somewhere?! No idea. Still don't know. So a correction shot was given, and started to work, and now of course we're paranoid she'll be low at 2am when we (I) wake to check her.

Sigh.

This is a crummy diabetes day. And I think it may be the end of the honeymoon. Fine... just lets hope we figure out what needs to happen next quickly, because this back and forth and high stuff is exhausting.

Tick Tock.

I hate waiting. For anything, really, just ask my husband. In some ways I guess living with a diabetic child has helped me with that little personal flaw, but it still grates on my nerves.

The current patience-requiring-annoying-thing in my life is this whole pump class deal. And then the scheduling, and then the more hurry up and wait to have the endos and insurance teams and pump manufacturer battle it out to get us our goods.

I think the reason behind my current bout of impatience is a pretty frequent and confusing series of highs throughout our daily schpeal. I never do snacks without testing any more, and half of the time she ends up with salami or cheese sticks because she's in the 200's. I don't correct, because an hour later at lunch time she's inevitably back down to 100-120. Go figure. I never noticed this trend previously, so I'm not sure if it's a new adjustment by her body, or if that's simply because we didn't test as frequently in the first few months. Maybe it's been this way all along, I'm not really sure.

I'm no rocket scientist, I'm trying to consider where I might make adjustments to her dosing, but it almost never fails - left alone at the current ratios she has, she's back down within range before every meal and usually at bed time. So I'm not really sure what I can do. I think this will justify a little call into the endo team tonight, the amount of highs lately are making the mom in me feel pretty uncomfortable.

That said, I feel like the pump will definitely help us with this kind of constant fluctuation. At least, I anticipate it will based on the things I've read, but I could be wrong. I know that diabetes is a running race where it's typically in the lead and you're doing your very best to stay right on it's heels... but still, the spikes are no good.

So, I'm going to sit here and buck up and put on my special 'be patient for crying out loud' hat, and see how everything goes. Thanks to the wonderful d-mom's out there and actually read through my blog (you guys are awesome) I'm prepared to set up the whole 'write a letter of medical necessity and get this ball rolling!' gig when the time comes. We're still waiting (2 weeks almost now) to get approval for 350 or 400 strips vs the 200 they give us as a default through insurance. It says right on the bottle 'test 10 times a day'... so explain the math in giving us 200 strips for 30 days. These people are giving us medications but are having trouble counting :P Grreeatt.

I'm also a little impatient about Maui, but I think I'm nervous enough about the whole she-bang with diabetes that it's helping me build up to it and wait it out without too much spazzing on my part. I'm starting to read up on the TSA rules, taking advice where I can on how to pack for a diabetic. I think the eating out and extended outside fun is what's making me a little nervous. I'm adaptable, I can hang, but the food stuff is going to be a little tricky. I can only do my best, I doubt the resort has carb counts for their restaurant foods. I just want her to be able to enjoy Hawaii with us. This trip feels almost like a 're-do'.

Despite having had an AMAZING trip to Kauai last year, I think for both my husband and I there's a bit of a shadow over the whole thing... all we can really seem to remember and focus on is the fact that she was actually deteriorating and 2 days after we got home we had the shock of our lives. Kinda put a damper on the whole thing. Looking at pictures from that trip are still a little bittersweet.. she was so skinny and tired!

We need a make-up trip :)  And we need a pump. And I need some coffee, too, so I'll leave it at that.

And upward we go.

Literally!

Sierra's had an interesting few days to say the least as far as blood sugar levels go. Truthfully we're all a little baffled (and frustrated) but I tend to wait for at least a 3 day trend before making any major changes to her dosing ratios for insulin. Her latest trends are very high, yet she wakes up at a reasonable number which blows my 'the Lantus isn't enough!' idea clear out of the water. The real issue is the randomness of her numbers. Spiking, correcting, going low, being normal, spiking - rinse, repeat. We had to give her two correction shots (those are shots given between meal times to help bring a high number down without coverage carbs) the other night, and she had to get one at school at snack time yesterday. Poor kid. Poor us! Explaining to a 3 year old at 1:30am that they get an extra shot is not high on my to-do list, ever.

We survived, and so far today things seem alright, but I say that with a smidgen of skepticism that has come from the roller coaster life diabetes is adapting me to. I think moments/days like these draw me closer to the conclusion that a pump is ABSOLUTELY the way to go for us. She has a fair amount of lows, and lately quite a bit of highs. I miss our stability.

The thing with diabetes (at least in our world) is that the unpredictable nature of it all can literally change your perspective day to day. There is always something to learn, change, watch etc. If I ever feel like we're in a good groove and I've got it handled it surely changes right away. IT KNOWS.

I have to admit a 'reactionary' disease in this sense is hard for me to appreciate and accept. I will, and I am, and usually I get it and it's alright. But some days, the lack of real ability to 'control' as opposed to 'chase' diabetes is a frustrating battle internally AND externally. I rationalize that I need to accept that the way things currently work, it is something you follow, not generally something you lead. Maybe I'm wrong on that point, but that's how it feels because just about anything can shift blood sugars and sometimes you don't know why. There is no (logical) explanation. Clearly the aliens are doing something to the atmosphere this week, because Sierra's numbers make no sense otherwise :)

I know I babble but it's in my nature. There aren't always going to be real, direct, tangible points to my posts, which is why it's my blog. If the randomness confuses you I apologize in advance. Sometimes I just need to get swirling thoughts out of my brain.

Ultimately, I hope her highs scram today. I found myself walking to her room for the 2am closing my eyes and saying over and over again *please don't need a correction, please don't need a correction* because I knew we were all so tired from the night before. Thankfully, though high, she wasn't high enough to really need a shot, and she was in perfect range this morning. Whew.

Our insurance company rep sent us information for their requirements in order to get on a pump - one of which includes 3 diabetic appointments with the endocrines and 6 months of control since the diagnosis.

Could be a bit of a roadblock, as April = 6 months since diagnosis and that's when we head to Hawaii. I'd rather not carry a bag of 40+ needles and everything else with us, pods or sets would hopefully be a little easier - but I guess we'll do what we have to. I intend to battle it out on my terms to get it a few months before, we'll see what happens. Frank can be VERY convincing when fighting for something he wants, as well, and I hope together we can make it happen. It's less about vacation though, and more about finding a better control method for Sierra - I really think it could make a big difference.

Until next time...