Oh, hi! (or Aloha?)

Sooo, it's only been (nearly) a month since my last update. I know you've all just been on the EDGE of your seat waiting for a new post....haha... so here it is.

Hawaii has come and gone and after a good month of parental stress regarding traveling with a little diabetic I couldn't be happier to report a fantastic trip with pretty darn good numbers to show for it! Truthfully, for the first 4 days of our 7 day trip she was almost NEVER out of our desired 100-150 range. It was crazy.  That never happens four days in a row, nevermind with me having no true idea of how many exact carbs we're looking at during the breakfast buffet and random bread sizes etc we experimented with the whole trip. I'm feeling pretty proud right now, a moment of 'pat yourself on the back' if you will. I think we had one bottle of lantus go bad due to heat (although I carried an icepack in our insulated lunch box that we use for her supplies, I think one day at the pool it just didn't cut it).  She didn't have any lows under 60 - which is wonderful for us, and that didn't even show until day 5. So awesome. We did start to see some pretty high numbers when the Lantus petered out, but that was easily remedied with our backup! Preparation paid off!

This was truly a redemption trip of us, for those of you following (or new), you'll maybe remember that our last trip to Hawaii (Kauai) was October of 2011. That's right, the week before she was diagnosed and was clearly off. She looked thin, was drinking ridiculous amounts of water, and hardly sleeping. So... while I know we had a good trip and I wouldn't take it back - it's absolutely overshadowed by the whole coming back, finding out she was diabetic and spending 3 days in PICU thing. I see photos and know we were enjoying ourselves but think "oh, that was when she was pretty sick and we had no idea". This trip made up for it, Hawaii redeemed :) Like it's Hawaii's fault right? Hah!

I started the pump-obtaining process (Animas Ping) about a week and a half before I left. Theoretically we should've had it a few days ago so that we could get started and attend a pump start appointment on May 17th - sadly, it's still stuck with insurance so I don't have that pump in my greedy little hands just yet. I had to postpone, hopefully no later than mid-June but I'm waiting to hear back. I'm going to wear the pump for 7 days during the saline trial, then transfer it to Sierra for the remaining 3 days only (who wants to be the one to explain to a NOW 4 year old that we're going to wear the pump but still have to do shots for 3 days? Cruel I tell you! I get it, but cruel none the less).  That way I get used to pushing the buttons and doing a 'set' change (which is what they call when you put in a new tube/needle and fill the pump w/ new insulin). You typically only change every 3ish days, assuming all is going well, so that will be a big benefit assuming we do it correctly and don't have trouble with kinked tubes or other things I hear about. We'll hope for the best, it's going to be frustrating at times, as are shots - though I feel like I have a pretty good handle on those these days - but it's a learning curve and I'm prepared to take it on.

An interesting point out of left field for you - I still get up 95% of nights between 2-3am to do Sierra's blood sugar, often she now sleeps through the pokes (thank goodness), and she's great when I have to wake her for the random low so she can consume some sugar - but I think my body is sadly adjusted to never getting a full nights sleep. I'm used to just being tired, and maybe once or twice a week it completely catches up with me and I feel like crying when I have to roll out of bed, but I do it, and life goes on. Funny how you adjust, isn't it? Sometimes I just say up until midnight and if her number looks good I'll let both of us sleep a full 7ish hours, which is FABULOUS, but I try not to do it too often because then it's even harder to get up the next night at 2 again. I think the hardest part of sleep deprivation (even when adjusted to it) is the 3pm hour. Right when Max is getting up from his nap and I'm 100% ready for one. Ah well. What are you going to do, right? Those friends of mine out in the non-virtual world, if you ever wonder why I look so damned tired or 'busted' (as Frank and I lovingly put it) at times this is why ;) Makeup can only do so much some days! I'm usually ok though. We're adapting pretty well, I suppose.

And now? A virtual slide show!

Until next time... Aloha!

Movin' along.

We're continuing on here in D-land at a jagged, but somewhat steady, pace as usual. I think the difference of late is that I feel more adept and accustomed to changing things based on completely random elements like whether it's raining, if she had a few lows the night before, or if someone randomly sneezed in China. That sort of thing. I'm getting better at 'on the fly' ratio adapting. For those unfamiliar - I mean insulin to carb ratios (how much insulin she gets per grams of carbs). This has been a helpful adaptation, I think, because I feel a little less stressed about the unknown in regard to food situations and the like.

April has been a very surprisingly busy month both professionally and here at home with the kids, so I apologize for the lack of updates lately. I can't say that there have been any major telling swings here in our world, but I did put the paperwork through to get an Animas Ping pump lined up for our little diabetic hopefully upon our return from Maui the first week of May! This is exciting, I feel like we finally are moving forward with something we've painstakingly gone back and forth over for a good 3-4 months (rightfully, but still, it's tough to make that kind of decision). Ultimately I know that pump therapy is going to be another big crazy shift for us - and that it's the right move to make for Sierra and our family as a whole. I know there is a world of benefit that's going to come with this new curve ball, but at least I'm the one that threw it (more or less) by pulling the trigger and getting it all in motion. It feels good to have a 'plan' - thus far I feel like I've been in reaction mode. Ok, so technically you're ALWAYS in reaction mode where diabetes is concerned, I just mean in response to how we're dealing with it. Going to a pump is an educated guess WE made - and it feels good. It feels right.

We've also decided to contact the local Dexcom rep. We're going to start the process to hopefully get a 'CGM' (continuous glucose monitor). I could probably spend an hour trying to thoroughly explain what that is, and it may be interesting to .01% of you in that kind of detail, but suffice to say it's essentially another tool to give you an idea at a glance of a diabetics current blood sugar level. Sadly, these aren't 100% accurate and are typically running from what I understand anywhere from 10-20 minutes behind their current levels, do have false alarms, and need to be frequently calibrated (and doesn't replace the need to finger prick as often as we do already for the most accurate information) but those reasons aren't why we decided to go for it anyway. Trends. It shows you *trends*. Is she probably going up? Or is she coming down? Staying even stephens? GREAT! This information on trends is so important to us, especially considering how often we run into hypoglycemia (low blood sugar) in the middle of the night for random unexplained reasons all too frequently in my mind.

I can't say I've been super happy with Sierra's numbers lately, but we HAVE (typically on a larger scale) had fewer bad lows. We've also had more highs, but apparently we need to avoid the lows more at this point. An interesting thing about Sierra is watching her numbers on her school days. Maybe those of you with young diabetics can tell me if this sort of thing ever happens to you guys:

For a while, we noticed Sierra had MUCH higher numbers (despite the same or slightly MORE aggressive insulin amounts on school days - administered by the teacher after my training). We thought food might be the culprit so for the last few weeks I've been feeding her breakfast, sending her with lunch (with dosing info/carbs listed on the food etc). Her mornings have been better/normal - but now every single school day after lunch/nap - she wakes up pretty high. Like 350-450 high. What's interesting is that her insulin dose is almost to the point of being *doubled* for lunch on school days vs home days - yet she's still coming out high.

Then, inevitably at dinner she needs additional insulin (called a correction - insulin added to the measured for carbs insulin) to help bring her back into range - and then she ends up low all night. It's difficult because she does need some sort of correction, and her correction scale is very very scaled back - very low dose already, so I'm not sure what's up with the all night lows.

Last night I decided to go for it and stay up until midnight working, do Sierra's night check, then ahhh blissfully fall into slumber for an entire 6.5 hours STRAIGHT. That's right. UNINTERRUPTED 6.5 hours of sleep. Heavenly, right? I was foaming at the mouth at the idea, so I stayed awake and forced myself to work. She went to bed at a perfectly respectable range of something like 150-200, I can't remember the exact number and I'm not looking at that excel spreadsheet again today thank you very much. Anyway, I go in at 12:30, soooo ready for sleep and proud of myself for making it so long despite being a sleep deprived zombie mom, give her a poke - and am alarmed to read a glaring and somewhat scary 39 staring back at me. I fill her with a box of juice, a 4g glucose tablet (which usually in itself brings her up 40-50 points on her blood sugar reading - quickly) and two low sugar special fruictose sweetened cookies made for diabetics. Anyway, probably somewhere around 24g of carbs - which is no small amount for Sierra, but I wasn't risking anything less if I planned on sleeping at all that night.

I waited, she was up to 120 and finishing her cookies 20 minutes later so I felt that it was safe to let her go back to sleep and finally crawl into bed myself. Sadly, the dream I had about that whole 6 hours straight stuff was clearly smashed to smithereens. No, I set my alarm instead for 4am (it was 1am at this point). When I got up at 1am, stumbled pathetically into her room and ran another finger poke test, I was pleased to see a shiny happy 178. I felt she was safe to go until 7:30/8am when it was time to get up.

When I did get her up for breakfast around 8ish, she was 59.

*sigh*.

Her numbers have been fantastic today, last night was way over my head, as is this whole randomly high-post-school-lunch (no she doesn't swipe other kids foods, and she goes into circle time then straight down for a nap one lunch is over... whaat??) It's pretty much a giant mystery and a pretty frustrating one. Do I keep increasing her lunch time school day insulin? Or is that causing her to go low all night (unlikely but it's an interesting trend none the less)?

I hate these kind of diabetes mysteries. Its the same food she has here, more insulin, and theoretically she's MORE active at school (which typically LOWERS blood sugar)... so.... what the hell?

My brain hurts just thinking about it.

Sorry for the novel like entry, it's been a frustrating trend I can't seem to break.

Tonight I'm staying up again until probably midnight. Wish me luck, I sincerely hope to find her in a better range.

From the mouth of babes...

A little tidbit from Sierra... apparently Eggs make her low ;)

Sorry for the quality.... My Canon 5DmkII + youtube/blog sizing isn't very complimentary :) You can check the genuine video in HD from this link if you want :)

http://www.youtube.com/watch?v=BA8pNtoMCew&feature=youtu.be

The Daily Chase

There's much to be said for races. They can be invigorating, empowering, motivating - the list could go on for days. Sadly the chase I refer to (and the race we live day to day) is generally none of these things.

Every day that passes with Sierra's disease there is, however, opportunity. It's a little bit of a 'trick' opportunity, because in truth even while you're learning new things sometimes multiple times a day, typically it doesn't always *matter* the next. Why? Because diabetes is nuts.

Yep. That's right. It's crazy-town. Diabetes isn't logical, it isn't rational, it isn't graspable. It is a constantly moving, changing THING. Sure, there are a few bits that remain the same (lows are always lows, highs are always highs, my kid can be pretty understandably psycho during either) etc. But for the most part, the dumbest thing I appear to do as a parent and caregiver of a little diabetic is to EVER assume I know (in the greater sense) what the hell I am doing.

I know what needs to be done, I know how to do it, however, how effective what I know what to do and what I am doing changes constantly. That's the difficult piece. It's hard to explain to someone who doesn't live and breath it, but I'm trying. What makes diabetes so frustrating is the fact that is in every way 'a moving target'.  Oh, she's low tonight? Okay lets give her more carbs tomorrow night so she doesn't drop twice in the middle of it tomorrow! Yay we figured it out!... wait what? We sent her to bed at 200 thinking we covered what was going to happen and.... she's still 200? And back, and forth, and WHAT?

It's kind of like that. Daily. Nightly. Sometimes you luck out and have a couple-day streak of numbers that you sorta nail and you pretty much feel like a bonafide genius. Until the next time ;)

In the mean time, I'm working on contacting and getting the ball rolling hopefully for a Dexcom4 CGM (continuous glucose monitor - I'll have to do a post on that in the future, kind of a long explanation) and the One Touch Ping (Animas Ping) pump.  I think the plan is to roll everything out asap upon return from Hawaii in early May.  Happy Birthday to Sierra, I suppose? Hopefully the transition from shots to sets works in our favor... I don't think using any kind of needle is ever going to go over well (at least not for several more years, if even then) but fewer must be a move in the right direction, right?

Hope so.

That's it for now, spring break + two busy kids = no quiet focus time for me to really put much more into this blog post. More later, hopefully!

Yay for Clinic!

When we 'go to a clinic appointment' - it basically means a visit to the Endocrines and measuring Sisi's A1C (essentially a blood test that tells us how well diabetes management is going. As a parent, it sort of feels like a pass/fail test - probably not the best way to look at it, but since we're in charge of her management if we're not doing it right the test won't lie!), and getting lots of good in person advice and consultation.

This was actually a great visit. I was very happy to meet a new doctor this round, the same one we'll be meeting with every time now as we're no longer driving all of the way to Stanford but instead to a satellite office in Los Gatos (woohoo!) for our once-every-3-months check ups. He was great! I've heard so much about this man within the local diabetic community, he's known for his extensive research and frequent speeches etc at diabetic events. I felt very sure being in his presence and having him explain and help us understand different things that have been troubling us.

The two days following clinic (which if you remember correctly - the previous weeks had been spent with a horrible amount of variation in her numbers, particularly scary lows and unexplained highs etc), I had her in a desired, normal blood sugar range of 100-150 almost non-stop. Granted, that never lasts, but it was so nice to just get a 2 days break from any craziness! We adjusted her numbers, scaled back on some things and discovered others and it's been a pretty positive result. I feel more free to work on the dosing after hearing some of the things the doctor explained to us and that's a pretty great feeling.

When she was diagnosed her A1C was 10.4 (doesn't really count, since she was obviously in the hospital but it gives you a starting point of reference), one month later at our follow up appointment after diagnosis she had gone to 7.2 - which we were told was pretty great. Yay! I was worried after all of the horrible numbers she was going to shoot back up to some crazy yuck number. I was surprised to hear she was 7.0. Unfortunately, this wasn't great either (although if you were an adult diabetic and this number came up within controlled #s it'd be pretty sweet), because it's only low due to the high percentage of lows. Still, I didn't get "in trouble" (hah), I was told we had room to bring her up to something like 7.4-7.8 for a comfortable place. 7.5 being a pretty ideal spot for someone her age. So that's the goal I'm working toward now.

To put it into perspective, typically a 'lower' A1C (5-7 for adults or 7.5-8.5 for young children as far as I understand) is indicative of good diabetes management - that means keeping her blood sugars in good levels more often than not, generally.

We also got some very good (different) perspectives on pumps and CGMs from this doctor, who I know does a GREAT deal of research on latest advancements and current CGMs on the market. I really feel drawn to his opinions (as opposed to 'pushed' in one direction or the other). He had a lot of positive things to say about most pumps, although he did feel for the doses Sierra is currently on the Omnipod probably wouldn't be the best solution due to it's .5 vs .25 insulin adjustment rates (a pump delivers insulin at a constant drip vs giving doses just for meals + a 24 hour dose once a day as we do now).

I feel right now that I'm leaning towards the Animas Ping. Which is funny because it really hadn't been on my list before... and I think we are definitely going to add in the Dexcom 4 CGM relatively soon, as well. He thinks within the next 8-12 months or so a newer version is going to be out that he feels is more accurate and seems pretty great, but in the mean time, we think it'd be worth going with his current recommendation. It should help us a little in understanding what different foods and activities are doing to her blood sugar.

I think we will decide between the Ping and Minimed within the next few weeks and get either on order and get this process started. I know we'll have a big learning curve (again) with this change in how we manage her diabetes, but I think in the long run it will absolutely be for the better. It will be easier to let her eat when she's hungry (and how much she eats!) and be a little easier for others to help care for her at times.

I'm excited. This was a very positive experience and I'm grateful for our new endocrine and his knowledge!

The hardest part now is trying to figure out when Sierra is 'just being 3 (almost 4)' or if she's low (or high) during those insanely irrational temper tantrums. I think we're at about 50/50 right now. Sheesh.

Lows Lows Lows.

Still sort of struggling for some sort of 'reasoning' where D is concerned here in the F household. Maybe this whole chasing game is going to take longer to accept than I thought but I hate feeling like I understand so little about something so BIG that has to do with my daughter. She's so young, she depends on me to take care of her and feeling so confused and stumped by some of the things that come up SO often lately makes me feel like a bit of a failure. I know it's temporary and things change day to day, but it can be tough to get through some days.

Yesterday, for example, Sierra for some unknown reason had a horrible bought of lows. Now, technically speaking anything under 80 is 'low'. Sierra frequently hits the high 40s, 50s and low 60s. I mean at least once daily. The problem I'm running into is that the other parts of the day she's either high or just about right - and these lows are like drive-bys. Totally random on any given day, never the same time twice, never the same circumstances etc. We've already lowered her Lantus so she wavers between 200-250 and then lows. Very few 'in range' numbers this past week.

What's probably more unfortunate is the lack of available phone support or turn around with our endo team at Stanford. They're very busy, they need at least one or two other endocrine nurse educators (which they'd probably overload shortly after their arrival anyway) - but oncall sometimes seems extreme, other times playing phone tag with the nurses can be frustrating. I have another child, I have times when I'm putting kids to bed, or am going to the bathroom or am driving and don't hear the phone or can't answer. Tag isn't exactly ideal in our current situation, but it's the name of the game right now.

Yesterday was especially rough. She started out great, 149 - awesome. She was in the mid-200s after breakfast - which is typically so I don't worry about it. 195 at lunch, great! My mom and I took her to the mall for a quick trip (just short of an hour), I tested again when we got back despite her behavior being completely normal - 51. Really? Juice. 20 minutes. 63. REALLY? Waited 15 more to see if we're just slowly going up - 75. Gave a few crackers to boost her theoretically as it normally would. Drove home, tested an hour later - 58. More juice. Finally 115. Whew. She passed out on the living room floor (just a nap - not literally) after dragging all of her blankets upstairs into the living room and laying them meticulously flat on the floor:

I imagine she was tired from being low for a good portion of time, so I let her rest for about 45 minutes before waking her to go out to dinner (and tested of course before hand). 61. *sigh*. Lots of juice. 209 at dinner. Finally. Now I'm bringing all of her ratios down and she stayed over 240 all night. I'm having school test her hourly today just to be safe. I can't handle all of the 40s she's had lately, it's scary!

We have our clinic appointment (once every 3 months you test for A1C levels - which is basically a blood panel that gives you a # that says how well you've been managing her blood sugar according to her body along with meeting with your endos and asking questions/going over doses and tweeking numbers) next Wednesday and I'm chomping at the bit.

Once we finish moving next week and get settled we're going to probably put in the paperwork to get the medtronic - I have a few questions I want to ask about in person at our appointment first. I also think a CGM is going to have to be in our semi-near future at this point. Not thrilled about sticking two needles into her that need to stay on all of the time, but I'm not thrilled about her numbers or frankly her disease either - so accepting some things I'm not happy about for the greater good is just going to have to be par for the course.

That's our update this week... sadly not fantastic news, but we keep chugging along.

Sharps.

So, obviously, I'm a newb to the world of 'sharps'. Needles are relatively a new thing for me and sure, I've gotten over my uncomfortable feeling about shoving one into anyone's arm (especially my squirming toddlers), however I finally had my first experience with Sharps DISPOSAL.

I'm sure to many, many people out there this is a pretty straight forward and obvious process. You get a sharps container, you fill it, you take it to a disposal spot or leave it out for the trash people. Right? Sure. Except I didn't know how(where) the heck to do that. I finally took the time to find out where I could take our container (local CVS, where we get her prescriptions filled - easy right? Score!). I was so proud, we finally ordered an 'official' sharps container because up until now we've just filled thick Tupperware containers and dumped them at our Clinic visits (we're only 4.5 months in, so bear with me). I filled the box, took it in to get it dumped - and stood there slack jawed when they took the whole thing and didn't come back.

Ooooooh, the light bulb goes on. See, here I figured they had some giant depository and they just crack the lid and tip it over and empty it then return the bin. I know, kind of naive right? Cut me some slack!! I was bummed. Goodbye new container... and then the realization 'wait...I have to buy a new fricking container just to be dumped every 1-2 months?! YUCK!'. Major yuck. Lucky for me someone in the checkout line overheard my dismay at the process and told me they accept milk jug containers as an option as long as you have the lid on.

WHEW. For some reason the idea of dumping a big ol' thing of plastic that was used specifically to collect more little plastic things really rubbed me the wrong way. At least we're already using milk jugs and now they get to be re-recycled in house before going out with the shots.

That's my goofy little tale of the day... on to more serious matters now that how to get rid of sharps is old hat for me *dusts knuckles on chest* yeaaah movin' on...

Sierra's numbers have still been pretty random. Unfortunately despite adjustments I've noticed she has an alarmingly RANDOM occurrence of daily lows (typically 1 - and by low I mean under 70, but usually in the 45-60 range lately). In a normal situation I would watch for a couple of days and fix as needed. The problem with these lows is that they NEVER OCCUR AT THE SAME TIME. Ever. Totally sporadic, totally unassociated with energy expense, totally and maddeningly hard to grasp. We test typically 8-10 times a day, so we see in between the lines and I am telling you this stuff doesn't make sense to me.

I like to think I'm a relatively smart, quick learning individual. I have to admit that diabetes makes me feel like a rube. I am struggling here because frankly none of it makes sense the way I think it should. When I think to myself one night "ok so according to xyz and everything pointing here as it has - she should be around 180-220 at the check tonight but back to 100-120 in the morning...", she's 61. WHAT? Trends don't seem to mean crap as far as diabetes is concerned and that really ticks me off.

Right now we're thinking of adding the pump in after Hawaii... and originally we were thinking CGM (continuous gluclose monitor) in a year or so after that. I'm not sure we'll make it that long. I can never guess whether she's going up or down at any given moment - and half of the time my assumptions are incorrect. Do all diabetics (or diabetic children) seem to go up from a normal range to about 200-300 roughly 1-2 hours after a meal then find themselves back in range by the following meal? I assume that's normal and not technically a spike - just the way it's delivered and how it all works through the system but it sure does throw me off. And then she doesn't get a carb snack because she's a little high - but then randomly she's low at lunch sometimes when I'd only checked an hour before and she was well over range.

IT IS DISCONCERTING! I can't keep up. I hope the call we plan on making to the endos clear some of this confusion up for me, I don't know if it's me or just the nature of the beast. It's hard to know when we're this new to the game. DH is baffled too, so at least I'm not dumb alone ;)

Our next clinic appointment is on the 14th and boy you can bet I'm going to squeeze every minute out of that team I can muster. Questions galore.