Delusion, a chimera in my brain, a fancy, my ignis fatuus

"Normal is what everyone else is and you are not." Dr. Soran - ST:Generations 

    I was told shortly after Jonathan was first diagnosed that we would "find a new normal".  At the time, I thought that meant that we would integrate Diabetes into our lives and eventually the wound it opened would heal around it and it would just become a part of us.  In a way I guess that's kind of what happened, but I think it went a little beyond that.

   Yesterday, as I was approaching the verge of a mini-mental collapse over a bunch of BS at work, I sat down with someone to talk and they were surprised about how stressed out I was over the matters at hand.  They said, "well, I'm sure things at home aren't helping either."  I knew they were referring to dealing with my son's Type 1 and at first I was about to dismiss the notion that it could be a major contributor, but then it suddenly hit me - my little boy's life hangs in the balance of decisions I make every day, he's basically on life support and that which keeps him alive could kill him.  We've barely had a solid night's sleep in 20 months and there are many more nights to come...  And then it smacked me like a ton of bricks, somehow, some way, this had become "OK".  And I thought to myself "WTF!?!?!?!"  This is NOT OK.  This is not what a 5yr old should have to live with, this is not how a family is supposed to be managing their lives, this is totally wrong.

  I think what happened is (and I don't want to give it up, but I think I'll have to change my approach) in all my efforts to make life an normal as possible for Jonathan and the rest of the family, and trying to assure people that things are under control and all is well, I somehow tricked myself into downplaying just how perilous and damning this thing can be.

   Then, just last night, after a day of phenomenal numbers (like non-diabetic numbers), Jonathan was a little high at 10pm (13.5 / 243), so I pushed his buttons and didn't really give it a second thought.  At 2:30 this morning I did my nightly shuffle into his room to find 2.9 (52).  Oh $#!^!  3/4 of a cup of milk and 40 minutes later he was 5.9 (106) - 5.7 at 6am, and 5.9 at breakfast.  So what the heck would have happened if I hadn't done my nightly rounds?  I shudder to think, especially after a Princess' recent horror.  I've never questioned a 13.5 before, that's not totally unusual, and normally a wonky reading is over 20 and that needs to be re-checked.

   This morning I got another one.  Part of my morning routine is to check the mail, weather, and updates on my phone before moving on to get ready, and there it was on the top of my news feed:

"In my house the "medicine" that could save you, could kill you.  In my house juice boxes save lives. In my house parents never sleep.  In my house our days are measured in numbers.  In my house my child must be an adult.  In my house we dread bedtime.  In my house blood is shed every day.  In my house this is the norm.  Type 1 lives in my house."

    So despite my self-administered delusion, the fact of the matter is, there's aren't seven days a week - there are 3 days in a set.  A 2am walk to the washroom isn't something that will happen after 40 - it will be routine for the next 20.  As surely as there are 365 days in a year (occasionally 366) - there will be 3300+ bloody fingers, 122+ set changes, 4+ clinics / A1c tests, and 31,536,000+ chances to do it wrong.

   I guess "normal" is we make it, but the truth is my head has been in the sand lately, and while ignorance can be bliss it can become hell.  While living life somewhere in between I'm reminded that it's important to keep the truth in mind.

He's too smart for my own good

   Jonathan's a bright kid (and he better be if he wants to make good on his plans to become a doctor), this was no news to me.  Starting the pump just before he turned 5 I figured we wait a good four to five years before we would start teaching him how to use his pump.  Well... little man had a different plan apparently.  I guess seeing something done three or more times a day, seven days a week, for three months, he was bound to catch on to a thing or two.

   A few weeks back, Jonathan began insisting he could lock his pump himself - and promptly demonstrated the swift button presses to do it.  At first I was a little concerned that he would push any buttons, but knowing how obsessed he is about having his pump locked I thought this would be OK should an occasion arise where he was without us and noticed his pump unlocked.  Content to have him maneuver his tech to a safe place, I let it go for a while.

   Monday night, much to my horror, he unlocked the pump.  "Hmmmmm..." I thought, "this isn't good".  So we had a little talk about who unlocks and who doesn't.  He happily agreed.

   Last night, when it was time for his shower, I was disconnecting him and he proudly told me that he knew how to suspend his pump.  I paused for a moment and then decided I should know if he really could.  I handed him his unlocked pump and S#!T  Click click click - beep.  UH OH!

  While I'm impressed that he picked this up and does it without even seeming to have to think about it, I'm totally horrified that he could suspend it and go hours without insulin... or even worse yet... the unthinkable.... give himself up to 5 units without a single carb to balance it (5 is his current max bolus setting and I don't think he'll be changing that without an insane amount of bad luck).

   And so my dilemma...  Do I start teaching my five year old son how to use his pump properly or put the fear of God into him that if he so much unsnaps the case a holy hell-fire will rain down upon him?  I figure the latter will result in some sort of emotional scaring that will take reams of therapy to correct before he can ever look at the pump again, but the former just doesn't seem right for us at this time either.

   So with some serious thinking and a nice chat with a great friend (who is also a nurse, CDE, and is pretty much the go to gal in the clinic at the hospital) I think I'm going to go somewhere down the middle: there will be Jonathan jobs and Mommy-Daddy-Nurse-Grandma jobs.  Jonathan can keep his hands clean before testing, Jonathan can test and Jonathan can unlock and lock with Mommy or Daddy present.  Mommy-Daddy-Nurse-Grandma are the only ones who can push other buttons, and most importantly - Jonathan NEVER activates insulin (by the way, I know he knows how because he talks grandma through it step-by-step).

   Even giving him a little responsibility with the pump specifically is terrifying.  He could test all day long for all I care (as long as he is at least testing), but to push pump buttons.... I think this is what handing over car keys someday might feel like.  So hopefully, for my sanity, at least a few years of pump drivers ed and then we'll see where we go from there.

The truth is... I am Iron Man

   Maybe it's because he's such a great looking guy....  Maybe it's because he's so popular with the ladies....  Maybe, it's because he really is as cool as a billionaire playboy...  Or maybe, just maybe, it's because he has a miracle of technology plugged into his torso.  But no matter how you slice it, he's my hero!

   Someone asked me today "How do you do Halloween with Jonathan?"  To which I responded "Well, first we find a really cool costume, then we dress him up and give him a bag.  Finally we send him running house to house screaming 'trick or treat'..."  And I was once again labeled a 'smart-ass'.  Fact of the matter is, we all know it looks a lot easier than it is.  

   Factor in assumed activity to the dinner bolus, set temp-basal, check BG often, have juice boxes on hand, and try to keep up.  I've never been a much of a juggler in a practical sense, but it kind felt like we were marching down the street with our balls in the air.

   I'd like to consider myself to be fairly non-judgmental, and I honestly don't remember having an opinion on diabetes and Halloween before, but I can imagine there of plenty of people out there who would shake their head at the notion of a diabetic child going trick-or-treating, and maybe even a few who would question our fitness as parents for allowing such an activity.  The simple matter of fact though, is that Halloween is no different for a diabetic child as it is for any other (at least not in their minds) and the irony of it is that most, if not all of our kids, actually are healthier trick-or-treaters than some of the other kids because they are typically more responsible (ok, with some guidance) with their sugary treats and don't gorge themselves on piles at a time (like I did when I was a kid).  He, and his sister, each get one - occasionally two treats per day as desserts after a meal (usually lunch - sometimes dinner), and his is factored into his carb count.

   Halloween this year, that is the night of, wasn't as big a deal D-wise as some may think.  Actually, there was no candy consumed by either child last night.  In D terms it was no different than a long after dinner walk with some extra fun thrown in.  I really don't want to over-simplify it (a 3.8 / 68 half way through was a big F-me moment), but the things is as much as it's harder than some may think, it's more doable than they might imagine.

   The thing that amazes me though about Jonathan is, over the past year had change, when special treats come up he doesn't put up too much of a fuss if his sugar is high and he has to wait until later.  He's shocked the hell out of both his teachers with how good he is about it.  Not just Halloween, but birthday cupcakes, craft snacks, and a number of other seasonal items.  Sometime he's not too high and there's no concern, but if he's in the 20's (>360) the teacher feels uncomfortable about sending him up higher, and really she's right.  As much as I don't want him to be excluded from special activities, he's better to wait until later for that special treat and have something more sensible at the time.... and he never puts up a fuss about it.

   Calm, cool, collected... and great tech for battling evil... he is a real Iron Man.

Goodbye, Farewell, and Amen

   Just under an hour ago, we said goodbye to one of our constant companions - Lantus.  Jonathan received what is planned to be his last ever injection of the stingy stuff (still have a couple vials in case of pump issues but that's not part of the intended plan).

   He's not sorry to see it go either.  He's hated the stuff since day one and I can't say I blame him.  I had to do a little research to figure out why, but I learned that it has the same pH as tomato juice... I hate tomato juice!  As much as I'm glad to see it go though, it unnerves me a bit.  This little bugger was one of the reasons I liked MDI.  It was all about insulin on board.

   Jonathan typically got his Lantus at 6:00pm, but since his pump start is in the morning we've been dialing it back the last 5 days to land him at 8:00am.  He had his last dose, that's his syringe there, and the leftover Lantus that will be going in the garbage.

   Barring a correction for a high tonight, Jonathan will be saying farewell to to his pen after just three more shots (lunch, dinner, and breakfast tomorrow just before we head off to the hospital).

   He is excited about the pump.  Not too crazy about set insertions, but he's only had two and I think that will get better with a little time.  Jonathan is really looking forward to this change and the end of MDI.  Amen!

A funny thing hapened on the way to good numbers....

Well, I was warned, and they were right.  Summer is definitely making it hard to keep up on the blog, but I just had to share this head scratching experience.

Almost a whole year into it now (wow I can't believe it's almost his anniversary) and I'm a lot more comfortable with keeping Jonathan in a tighter range; even though it means some nights I sleep in increments of minutes.  A couple of weeks ago as we were trying to figure out some crazy night time highs, one of the nurses at the clinic said something totally unexpected..... We were giving him too much insulin at dinner.

WTF????  Too much insulin = night time highs?  That's a little back-asswards I thought.

She asked us to back off on his dinner bolus by 1/2 unit and not correct through the night for a couple nights.  That was tough let me tell you... 15 (270), 16(288), 17(306)... It was hard to watch. Oddly enough though, he was getting breakfast numbers in the high single to low double digit range (144-198).  On the third night he was 8.4 two hours after dinner and 11 at four hours and steady through the night.  Too bizarre!

After much discussion, here's the working theory the team has....  I believe I've made mention before that Jonathan is non-symptomatic for hypoglycemia.  That is until he gets really low and then he goes into over-drive (adrenaline rush).  Well, our 2 hour numbers were more often in the 3 1/2 - 5 range (62-90), but we were OK with that because he'd climb back up and be fine at 4 hours.  As it turns out though, the near miss in the low triggered the adrenaline and that combined with carbs yet to be digested would send him sailing back into the teens and requiring one or more correction doses through the night.

So the strange "fact" (as much as anything D management can be a hard and fast fact) was that in Jonathan's case more insulin resulted in higher numbers and less resulted in lower.

How bizarre, how bizarre!



PS: 20 days to P day

One Down, One To Go - It is Like Buying a Car, Just Nicer Sales People

   I'll admit it, if you couldn't tell from the last post, Ping was a foregone conclusion.  Um... well... yeah......  Turns out I have a more long and hard thinking to do that I thought I did.

   I knew that picking a pump, like any major decision, was best done after taking a long hard look at the each of the finalists.  Although Animas really caught my attention, I knew that not talking to Medtronics would be a huge disservice to Jonathan (and us).  So tonight, the very nice and very knowledgeable Medtronics rep made the 2 hour drive to see us and spent about an hour and a half with the family.  Bringing pumps for everyone to play with as well as a number of infusion sets and other accessories he was able to speak to every point we threw at him (I think he's been through this before).

   Tomorrow we meet with the Animas rep.  I've met her before, super-nice lady, and has a daughter on the Ping.  I thought Steve had his work cut out for him and felt bad at first about making him drive all that way, but now I'm not so sure it's not April that has to do some real selling.

   If anything though at least I feel a little more at east about this being a more even match-up.

One Decision Down, One to Go...

    When I got back from the JDRF Canada AGM a couple weeks ago I let the world know that I had finally been turned.  I was heading in the direction already, but that trip was the last straw, it's on, we're getting Jonathan a pump.  So that pretty much seals the deal on MDIs.  Now on to the other big question: which pump?

    I guess a possible blessing in disguise is that we really only have three options (short of paying 100% out of pocket) Animas, Minimed, or Disetronic... and yes they are listed in their current running order in my head.  Actually, until today, I hadn't even heard of Disetronic (Roche), but they were on the list of three that we reviewed with Jonathan's team at the hospital.

    As with pretty much any big decision in my life (or in this case my son's), I end up walking in with a pretty good idea of what I want and how this is going to go down.  I've already leaked my infatuation with the ping, but in all fairness to the other fine products out there I am going to sit down with their reps and see what they have to offer.  With that being said though, the Spirit is pretty much already out of the running: 1) Apparently the rep doesn't have voice mail (or it's not currently working) and 2) We would be the only Roche family in the city that our clinic is aware of and they know very little about that product so support may be challenging.

    So, barring a brutal disappointment  by either the fine people at Johnson & Johnson or Medtronics, our final decision is to either Ping or go Mini.  I've got call into both reps asking for a meeting to review their products and hopefully within the next few weeks we will have one on order.  In the mean time, I'd love to hear from both camps out there as to why you love your particular pump and what made you got to it, stay with it or if you switched and why.  Please be assured that this is more for personal curiosity and to help generate questions for the reps and not the poll that knocks the runner-up out of the race.

    Some of the reasons I'm leaning towards the Animas are:

Luer lock connection - more options for sets.

Finer basil increment (1/2 that of mini)

Four basil profiles (1 more than mini)

Finer bolus increments (but both WAY smaller than syringe)

CalorieKing in the remote

And the biggies.....

The meter is the remote

It's water-proof (12' for 24 hours) and Jonathan loves to swim

On board calculators

What say you?

My Columbus Egg

I am a fan of things strange and bizarre.  One of my favorite people in history is Nikola Tesla.  I came across an article about him and some of his work, during which I stumbled upon a concept previously unknown to me - A Columbus Egg.

I thought this was a totally cool and strange thing, surely I would have to some day write about my own Columbus Egg, even a little one.  I figured something would pop up down the road, but lo and behold, it happened today.

Sometimes I write about the little things that really get to me (you may remember the nachos).  I have been at a loss to solve this problem, but all of a sudden it hit me and I felt like a moron for not thinking of it before...  In my never ending quest to keep things simple, I line the cookie sheet with foil so that I don't have a lot of clean up after.  Well shoot, why not just pinch the liner to form a little wall across the tray?  In this way I can ensure that Jonathan gets exactly the amount of carbs that I planned for him.

And there we have it.  It's not perfect, but the whole family is back on the same tray and I have my win for the day.

*   *   *

On a side note, I've added a new song to the play list.  I had it originally at the top but moved it down because it's a 6+ minute song, but a good one.  It is 30 Seconds to Mars' "This is War".  It's not totally D music, but it really reminded me about how we have to believe in ourselves most and fight the good fight; and when it comes to D - This is war!

Almost... but not quite

I know I say I try not to get hung up on the numbers, but I'll admit it, I was a little disappointed today.

 

Three months ago Jonathan hit the A1c target of 9.0% he was given two months prior to that.  At that same visit in February, he was given a new target of 8.5% for our May visit.  Looking at all the data we've collected over the past 90 or so days, I thought for sure he was going to come in under that… not so...  8.7% today.  The nurses were thrilled and reminded me that for a 4 year-old the "gold standard", as they put it, is anywhere between 8.5%-9.0%.  The Doctor on the other hand seems to be of the same opinion I am - almost… but not quite.  I'm not entirely convinced that these tests are confined to a 90 day period - I've seen some indications in my reading that it's more like 120 days which means what was going on since his 9.4% in November is still in play.

On the up side, his trend is downward which is a good thing.  We’ll be going back mid-August for his next check-up and I think we're in a better position to get that 8 1/2.  We're leaving his meal ratios alone for now, but we're going to try out a new correction scale.  Currently his standard correction scale is >15.0 = +1ū, >20.0 = +2ū, >25.0 = +3ū, >30.0 = +4ū, and his night time and school lunch corrections are, >15.0 = +1ū, >20.0 = +1.5ū, >25.0 = +2.5ū, >30.0 = +3.5ū, just to be on the safe side.  We decided this morning to max out the capability of his pen for corrections at home (anything other than school lunch) by using a 1/2 unit scale.  We're going to start at ≥13.0 = +0.5ū and add 0.5ū for every 2.0 more (ex. 15 = 1, 17 = 1.5…) and see how that goes.  I'd really like to hit 8.0%, but as long as the number keeps dropping I'll be good with that.

We talked again about pumping and they insist that we're already doing all of the data collecting and analysis to enable us to easily transition over however, for some reason I'm still stuck on getting past the 1 year mark first.  That and I know I need to spend some time to do serious research on the options available.  I did find out though that omnipod is not available in Canada - our clinic had 1 patient on it, but they went to Michigan to get it and paid all the expenses out of pocket.  I still have some concerns about pumping, but I think it's likely we'll go that way in the near future.  I told them that if they have a pump with a CGMS that will send readings and error codes to my Blackberry and I can send instruction to the pump, then I'm on board.  I'm still concerned about infection at infusion sites and issues with insulin being prevented from making it to his body (kink, crack, etc…), but I have more of an open mind about it, especially after reading about some of my friends' pumping experiences (gotta love DOC) and I have little doubt that we'll at least give it a try.

Other than that, he's gained a couple pounds and grown almost an inch, still riding the 75th%ile curve.  He's had a little morning cough but that seems to come and go on allergy days since we don't give him anything for that.  All in all, not too shabby :)

I love my team

D-day/week was an incredibly sad and stressful time full of horribleness, but at the same time one of the most wonderful things in the last 8 months happened - we met our D-team.

The doctor who delivered the news to us in those early morning hours became Jonathan's paediatrician.  Admittedly not an endocrinologist but works directly with a few, she is one of the most well respected diabetes-focused paediatricians in the area, very knowledgeable and experienced in paediatric Type 1 Diabetes cases.  Jonathan absolutely loves her and despite a hefty case-load, she always takes the time to review anything we need to and help mentor us in our care of Jonathan.  During our stay at the hospital, she was in to see us every day, sometimes several times a day.  I walked the halls at all hours and more often than not she was there, to the point that I was starting to wonder if she lived there.  He was discharged just before a holiday weekend when the clinic would be closed for 3 days, so she gave us a number where she could be paged.
 
There are three RNs in the clinic that are all immeasurably valuable.  M is a Certified Diabetes Educator and was the one who started us on our in-hospital crash-course and the one that I ultimately look to, to vet any changes or advice that I'm not 100% sure of.  D1 and D2 (no pun or joke indented, but both their initials are D, so… I'm goin' with it in the order that I met them) are my other two go-to gals.

My weekly calls are usually with D2 who is also a CDE.  We review Jonathan's numbers from the last week or so, discuss my analysis and what I plan to do, and she helps by looking for causes of out-of-range numbers, offering suggestions for improved management, and finally we agree on dose changes if any.  D1 was also involved in our initial classes at the hospital with M, in fact she was the first person I ever put a needle into (BRAVE WOMAN!).  Now, I don't know if she was just trying to be nice or not, but after I removed the needle on a silent 10 count she told me to go for it as if I hadn't even inserted it yet.  Yes, she let me stick a needle in her... Now that's going the extra mile!

I'm on the phone with D2, D1 or M at usually once a week, even if it's just for a quick chat about the status quo, or if need be we've talked for upwards of 45 minutes going over any number of D related topics (I monopolize way to much of their time, but they are so great about it.  They always make me feel like I'm the most important call of the day).

We now visit quarterly for an A1c check, weight, height and blood-pressure checks, and a review with Doctor.  This is regular maintenance.  If the need were to arise, we would still follow normal protocol in response to situational urgency: appointment with doctor at her office, visit to clinic, or trip to ER, whatever the circumstances dictate.

Jonathan had barely finished his first post-diagnosis meal when we were first visited by a dietician.  She spent a lot of time with us reviewing how to read nutritional labels, gauge fresh food's size to estimate carbs, how to use the national food guide, assembling healthy well-balanced meals (that all kids should have), and how to add up all those carbs and subtract the fibre so that we can have the food side of the insulin ratio figured out.  She was also the one that turned us on to the Salter scale that we love so much.  From time to time, as we have questions about food and how what we put in his mouth is metabolized, we call her to get help figuring out why some of the "wonky" things that happen come up.  Guess what - she a CDE on top of being a Registered Dietician.

In addition to the medical team, we also have access to other support areas.  A social worker visited us during our first week to discuss financial support opportunities (we have insurance so this didn't really apply), government grants/tax credits, etc. and I touched base with her a few times while I was getting some of those set up.  For Jonathan, a Children's Life Services team member came in to talk with him, have some play time, and also do some children's level Diabetes education.  When we visit the clinic, Jonathan still has access to the supervised play area (if our appointment is within the hours of operation).  He enjoys visiting the clinic and looks forward to everything from the magic stairs (escalator), visiting with the clinic team, having Doctor check him out, and chillin' in the play area.  The team even initiated contact with other organizations outside of the hospital for us.

From my point of view, diabetes management is a team effort.  The team may change over the years and the level of interaction between the home team* and others may fluctuate, but it's not, and never will be, a one person show.  I could not imagine life without this team.  I'd probably be back at the hospital, in the mental ward.  Although we've learned a lot, and are now fairly self sufficient with managing the D ourselves, there is so much reassurance and comfort that comes with having this awesome team of professionals by our side through all of this.  I am eternally grateful to them and I could never thank them enough for all they do to help keep Jonathan a healthy, safe and happy 4 year old kid - because first and foremost, that's what he is; he just happens to have Diabetes.

*Home team: There are a few other key individuals on the team who I did not write about today.  Mom and sister also have important roles in this.  I have pretty much assumed the lead on this and manage most of the planning, communication and dosing, but my wife also takes an active role, in fact she administers more injections than I do, she flies solo when I have to travel and she does more of the meal planning.  Our daughter is one of Jonathan's big supporters too.  She tries to comfort him when he's weary of the pokes and shots, and she does her best to understand the impact that this has on all of us and be a team player.  You can also read about two other key team members in my April 25th post.

We are incredibly lucky and truly blessed to have such a great team!

The Kit

I thought I'd share this tonight in the hopes that someone finds it useful.

I am many things, it's a long list - and I chuckle now because as I break out into making my point about being lazy, I don't really feel like typing that whole list.  In fact, sometimes I am so adverse to doing things that are complicated or time consuming that I will take what ends up being the longer way around in a futile attempt to avoid the right way.

I like making everything as easy as possible.  Now, I'm not saying that everyone that simplifies and organizes is lazy, that's just me.  Nevertheless, one of the benefits of me trying to find the easy way out, is that I tend to compartmentalize things into groups or categories.  Believe it or not, after spending more than three decades trying to avoid putting the effort into staying on top of things, I ended up doing it anyways because it's just easier.

I know a lot of people have there own variation of this, but here's mine:

"The Kit"

The plastic box (manufactured by Plano U.S.A., model 3650), holds enough supplies for about a week.

The only modification I had to make, other than placing the movable partitions, was to the fixed partition between his NovoRapid pen and the tube of cake decorating paste - I had to cut a notch for that narrow part at the top of the cap.

The black case in the large spot on the right is the pouch holding his Aviva Nano meter, test strips and lancet pen from Accu-Check (the case comes with it).  I added to the case a pen, piece of paper, and some alcohol wipes.  If we're just running to the corner store, or to the park down the street for a quick play time I only take that black pouch with the icing gel stuffed into it (it's a tight squeeze, but it does fit).  There's a 15g-carb bag of Skittles underneath that gel too - it's been there since day one, but now I have candy stashed all over God's green earth.

On the left side at the top are his 30 unit syringes (graduated in 1/2 units) for his Lantus (the lavender topped vial just beside the syringes) and next to the Lantus are the pen tips for his NovoRapid Pen (bottom left).  In between the needles and insulins are some alcohol wipes, BD lancets (in case his Accu-Check lancet get jammed, which hasn't happened yet) and some Accu-Check lancet drums.  This complete kit comes with us when we're out for a longer trip and/or a meal of easily calculated carbs.

For more complicated meals, or longer trips, we bring along his Salter Nutri-weigh scale, the universal power adapter we picked up at Best Buy, more alcohol wipes in that little baggie, 4 "AA" batteries (in the round container on the top-right) in case we can't find an outlet, and a little container for sharps.  The black laptop case, like the power adapter, was purchased separately, on the cheap, in the office supply aisle at, of all places, the grocery store.

There's a handy pocket on the inside of the lid of the case that hold the 8 1/2 x 11" booklet I record all his data in.

"The Kit" slides perfectly into the outer pocket with just enough space to actually close that flap.

To anyone else, it would just seem that I am some geek that can't bear to part with his trusty little net-book, but inside I have pretty much everything I need for an average day (or week) with Jonathan.

I also have a larger back-pack that this case can fit into and also carry his binders with the first Diabetes books we got, symptom cheat sheets, Keto-sticks, and pretty much everything else, short of an endocrinologist.

In under two minutes I can have what I need, in my hands, ready to fly out the door, easy peasy lemon squeezy as someone once said.  I like easy.  I would have married easy.  Easy is my kind of way!

One more thing: I openly and honestly admit that all of this is because we have not yet chosen to go to a pump.  I know the pump will obsolete much of "the kit", but until that day comes....

The game... continued

I started responding to a comment on my last post "Like a game, but not." when I realized I was breaking into another post... well more of a sequel or update.

I think at best we get about a week of "stability" from time to time.  It's been a while since we've gone 72 hours without a correction.   I went into our last appointment convinced that he was going to be well out of range and he was spot-on center (for 4 years old, they targeted his A1c at 9.0%, and he was exactly that).  But again now I see numbers bouncing around with an overall upward trend.

We made the adjustment to the long acting last night (only 1/2 unit, thank God) and he was sent off to bed at 6.7 (120) 2 hours after dinner.   Most often at that level he trends up; not last night.  At dinner +4 hours he was 4.0 (72) - juiced him (13g) and he was 8.1 by 11:00 and a smidgen higher at 3:00, 8.3 (150)... beautiful!  7:30 this morning, back to 4.1.  *Insert multiple expletives here*

Jonathan's been really into oatmeal for breakfast lately, not bad, healthy choice.  He also like a little chocolate syrup in his milk - OK not so great, but he eats well over all.  Now back to 4.1, kid needs to eat NOW.  I do the math: oatmeal + milk + chocolate = 52g @ 1:13....4 units.... Hmmm... Let me think about this for exactly 4.1 seconds, because I can't make him wait too long, but I need to decide what to do about this.  The cheat sheet says "if less than 4, dose after meal with 1 unit less".  So at 3.9 it's 3 units after, and at 4.1 it's 4 units before.  That seems like a huge gap for a 0.2 mmol/L (3.6 mg/dL) difference.  Hmmmm....

Being that he's with me all morning, I go for the 4 and test him 2 hours later at snack time: 19.1 (344) *Insert multiple expletives here*

On one hand I'm glad I didn't short change him after all, but on the other it could have gone the other way too.  On weekends I'm a little more apt to be on the aggressive side with insulin; school days I do a 180 and go conservative.  Today it seems I did the right thing so far.

Next stop on the glucoaster, Lunch!

Like a game, but not.

Preface: At the risk of repeating what most of us already know, I'm going to write this one anyway since I do this for myself as much as anyone else.

We used to play it all the time when I was living at home.  Frustratingly addictive, with little achievements turned into riotous celebrations and crushing collapses taken way to personally.  We'd build, slowly and steadily, just waiting for the inevitable….. and then - Jenga!

On the surface it seems deceptively simple.  18 layers of 3 rectangular blocks, each about three times longer than they are wide, with each layer rotated 90 degrees to the one directly below it.  Starting with a "solid" tower, blocks are removed from lower layers and placed on top until you either end up with a 54 level tower (very unlikely!), or a spectacular fall - at which point you have to pick up all your blocks and start over again.  There is a multitude of factors at play with the most obvious ones considered - perhaps without realizing it - being friction and center of gravity, as a loose block is removed and the tower sways.  Gingerly sliding the piece out of position and relocating it atop the pile, excitement builds with the height of the game while silent forces work against you intent on thwarting your progress; rotational speed of the earth, tectonic activity, atmospheric eddies, etc.  Finally, and without fail, comes the crash.  It may be after a few moves, or a longer while, but it comes eventually.  This is starting to sound familiar, and way too dramatic for a simple game of wooden blocks.

And so it is, at least in my take, with managing a child's Diabetes.  On the outside, for those who even happen to take notice, it seems like a simple matter of a five second test, some addition and division, and an injection - then all is well.  For those of us in the know however, we understand differently.  While the outward actions of management on average days may seem simple, the underlying elements are anything but.  We can test for blood glucose levels, tally carbs, divide for insulin, and attempt to adjust for activity, but we can't always account for physiology and other influences.  It's tricky enough just living with the tolerances and variability of our meters and nutritional labels, but there are so many factors unseen and/or undetectable.  Maybe there is a cold on the horizon that is already brewing trouble we can't detect, and quantifying stress responses is pretty much impossible.  As a group, we could probably come up with 101+ things that might be influencing our children's glucose levels, but a lot of them we know are out of our hands.

There are two ways to view the game (and I use that phrase for literary effect only, because this is not a game): Day to day, week to week, as we ride the glucoaster and work to keep as much straight track as we can knowing that stability in range is indicative of better health, but dealing with the curves and loops as they come.  As well we play in 90 day rounds, the success of which is determined at a quarterly visit to the clinic for an A1c check.  I know some medical professionals really drive home the feelings of success or failure based on that number, while others will take it as a lesson learned of things that work well and need to be continued or things that may not be keeping us on the straight & narrow and need to be adjusted, while minimizing the inherent celebration or admonishment.  Either way, it serves as a stake in the season to benchmark our upcoming months.  Whether we put more stock in the daily results, quarterly results, or regard both equally, we have the same objectives in mind - the best management possible.

Our tower is swaying right now, and we have about four and a half weeks before the next appointment.  As I review the last couple weeks of data and the trends therein, I see things are on the rise.  Lunch seemed to be a bit of an issue recently with regularly occurring pre-dinner highs, so we've adjusted Jonathan's lunch ratio to give an extra 1/2 unit of NovoRapid and it seems to be better, but still in the double digits.  Another review of the data suggests that we have a broader issue to address spanning the whole day, which would be taken up with his long-acting basil insulin.

As I write this, I am awaiting feedback from the clinic about adjusting the Lantus.  I'm thinking we'll end up with a full unit bump from 4-5, but in all likelihood they will recommend going by halves.  This is probably the prudent thing to do despite meaning double the nights of frequent checks; but deep down I know, regardless of my yearning for longer periods of sleep, I would probably do it one half at a time anyway.

With a little luck, a lot of patience, and some skill, we're going to re-center our tower.  This may mean it will lean the other way a bit too and we'll have to adjust again, but in the end we're moving onwards and upwards, one block one day at a time.

PS: I've since spoken with the nurse at the clinic (amazing group of people without whom I would not have my sanity by the way) and yep, 1/2 unit up it is.