Sticking it to Diabetes

What Liam wants everyone to know about Diabetes

2011-08-16T21:40:00.000-05:00

Today, we were talking about how the JDRF walk was coming up, and how it was a good time to share with people what it is like to have diabetes. He really seemed to be blown away when he realized that only people with diabetes know what it feels like.

He immediately told me he needed to make a movie about it and he wanted me to put it on the computer so people would know. I pressed record, and here it is:

I am SO proud of this little guy.

So who saw my pile of "low kits" going to kindergarten on Friday behind Liam's head? :)

Us and them.

2011-08-15T07:56:00.000-05:00

I spent most of yesterday putting together the plethora of cheat sheets for Liam's new teachers and school staff. And while I was standing in the office supply store, trimming and laminating, I watched gobs of kids come in and out with their parents. Buying their backpacks and school supplies. And it hit me so hard it took my breath away.

I looked down at the pile of guides in front of me, and the words popped out at me. Unconscious. Glucagon. Seizures. Ketones. Juice boxes. It seemed so over the top detailed, and at the same time I know that it has to be. My kid isn't safe at school. He's not even safe sitting in a room of other kids learning if people haven't been trained to KEEP HIM ALIVE.

I resumed trimming our laminated ID badges as I watched the people walk in and out. And it was just one of those moments when it was so obvious how different we are. I watched other kids pick out crayons and scissors while I created pile after pile of documents, each getting more and more ridiculous. A general care document with margins set at 0.3 of an inch and so much writing it makes your head spin. How to operate his insulin pump. His Dexcom Continuous Glucose Monitor. My kid LITERALLY comes with instruction manuals. It was just crystal clear. That is how they prepare for school, and this is how we prepare for school. Us. Them.

Hmmm. I listen to other people worry about whether their kids will have friends. Whether they still need the nap they aren't going to be able to take anymore. Whether they will like the lunches they send with them. And I can relate. I worry about those things too. And I try not to compare. As my wise husband often points out- we used to be them. Their stress load is increased right now too. This might be more than they are used to. More stress than you had yesterday is more stress than you had yesterday. But still. Us. Them.

And I start to feel alone. But then I look down at the pile in front of me. The ID badges Heidi made. The Diabetes ID sheet, that once upon a time, belonged to Hallie. It may have Liam's picture on it, and have been modified as we've gone along, but under document properties, there is her name. I think of all the emails I have exchanged with moms who GET it. I think of the pile of example 504's other moms have shared with me that are printed out at home. And these are made for real kids. They aren't just examples on some website. There is LOVE in these documents. And then I feel lucky, to have met so many other people who do get it.

I walk up to pay feeling stressed. This is a lot of work. I don't know if it was that all of my documents I was printing completely lost their formatting since the store's computers didn't recognize the font they were in. That all of my images were piled up in corners and headings were cut off and 1 page documents were now 3 page documents. Or that I had to pay to use their computer to fix them. That they didn't line up right on the printer. If it was just a premonition that I was going to go home and realized I had paid to laminate 30 ID badge cheat sheets that said to "rub the rube" of glucose gel into his gums. (And that is SO going to bother me all year). If it was that I still have a 504 to write and a meeting hanging over my head on friday.

I let out a big sigh as the cashier checked me out. She smiled, and said "One less thing!" One less thing. I like that. Yes, still more to do, but for now, one less thing.

Another paranoid (but more specific) school question

2011-08-08T22:45:00.000-05:00

So...

We switched over to the school schedule today to get ready for kindergarten in TWO WEEKS. He's been getting up at 7:30 and eating around 8, so I wanted some time to figure things out since he will be getting up at 6:30 and eating at 7. Breakfast has always been pretty tricky for us, but we've been having some consistent and satisfying results over the last couple months, so I wanted to make sure that a schedule change wouldn't affect that. (HA! HA HA!).

So he spikes up to freaking 384, double arrows up. Out the window goes the plan for morning snack- which he usually needs to keep him from crashing post breakfast (just no other way around it). Lunch was supposed to be at 11, but since he got his correction at 9:30, two hours after breakfast (did I say breakfast was supposed to be at 7? Yeah, he was still in bed. Oops.) he wasn't ready to eat lunch until closer to 11:30, because he was still uncomfortably far above target.

So the question is: what happens if it is lunch time at school, and he's high? Like, too high to let him eat high?

At home, we have the luxury of waiting until he comes down. I have the luxury of substituting low or no carb options until he's in range. At school, 30 minutes later means lunch is over. At school, lunch is whatever is already in his lunchbox.

In preschool, we didn't have lunch, but if he was too high at snack time, we'd give him the option of:

a) Hunt's Sugar Free "Snack Pack" (which means Jell-o)

I do not love this option for many reasons, first of all being that I firmly (ha ha) believe that jello-like products need to be cold. There is something scientifically confusing about how this does NOT have to be refrigerated. Which at pre-school was essential, since they would not allow us to use their refrigerator due to licensing restrictions. That isn't the kind of thing we'd normally have a problem with. Just ask my sweet five year old boy who almost spit out his Juicy Juice when he was low last week because it was COLD!! However, that did rule out meat, cheese, raw veggies... so there went our usual arsenal of low carb stuff.

Secondly, because I really hate to give Liam artificial sweeteners (check) and artificial dyes (unless that stuff is red from CHERRIES- no- check). I figure it sucks enough when he has to watch his classmates all eat the same carb loaded snack while he gets something else, so when he said he liked it, I decided to just call it a compromise.

b) Mt. Olive Pickle Pak

No brainer. Tiny, cute carb-free pickles individually packed and sealed so they don't have to be refrigerated. Now, I am totally repulsed by pickles and my husband is a strict Claussen-from-the-refrigerated-section-only SNOB, but these are so convenient that we are going to put our parental issues aside and let the kid eat them.

c) Jerky

We were getting desperate. We won't talk about the bag of fried pork rinds that made their way into my house. As a former vegetarian, the jerky offends me enough.

All is well and good with those, but a lunch they do not make.

We do have a Dexcom that we can monitor to make sure he's close to range as we come in to lunch, but remember he has to eat a snack two hours after breakfast to prevent a crash from the tail on his breakfast bolus. So if breakfast is at 6:45, snack is at 8:45, and lunch is just over two hours later at 11, we don't have much time to see where he is going to land before lunch. It makes me nervous.

How are we supposed to handle this? Any ideas?

Retail Therapy: D-Style

2011-08-05T21:21:00.002-05:00

So here it is. Just a few things I've been accumulating over the past few months in the name of diabetes and back to school preparation. Behold:

1. A diabetes bag: The Dr. Russell Journeyer

We had previously had this smallish messenger bag that we thought would be easier to carry and gender neutral, but it was way too big for Liam to carry at 4, and it was huge in my purse, and my husband usually just took what he wanted out of it when we went places. Let me disclose: I like to be prepared, so this is more than a strips and meter basic bag.

Next was the camo zippered case that we got when Liam was diagnosed. It was a good size for us, but I threw away the strap when we got home thinking we'd never use it, and the problem was more the inside. There was ONE lonely elastic strappy thing in there. we wedged our glucagon under it, but the rest of the "stuff" was just loose. I liked that the sides were more on the firm side, so that when I had to squat down in the middle of the grocery store/movie theater/public bathroom/airplane with a screaming/crying/grabbing newborn/infant/toddler strapped into a front carrier/on my lap/etc, there was a surface to work on. One of early cases was very floppy and the whole thing would just splay open and stuff was rolling everywhere. (Ever notice?: Test strip container: round. Lancet: round...) I'm just not coordinated enough and suddenly everything is all over the floor. Anyhow. So I wanted something firm.

But I also wanted something with places for all of the things. It's probably not just me, but sometimes the d-bag is closed but not zipped up, and then when you pick it up... a mess.

So I researched and found this bad boy. It's not exactly beautiful, but it isn't awful and it is supremely functional. Before I go all detail crazy and tell you why I love it let me take a second to share something else with you, lest you have a Houston moment and lose the things you need most.

See that shiny little thing hanging off the upper left hand corner of the bag? Funny story. So we were leaving a Walmart, and my husband (yep, totally his idea) saw one of those machines that will engrave a dog tag for you for about 5 bucks and decided it would be perfect to make a tag for his bag. It has Liam's name, "Diabetes supply kit" and our phone numbers with a desperate plea to return it to us. We've had it for nearly 2 years, and the thing is durable. Smart guy, huh?

Anyhow. The bag!

So on the left side, there is a loop for a small container of glucose tabs. Two secure velcro pouches (mesh) that we use for lancets, a Zofran tablet, batteries for the PDM, quarters for a snack emergency. Underneath is a zippered pouch we use to carry extra tape and tegaderm for pods and sensors that are losing their grip on life. Above, there is a pen loop, a clear ID badge area, and two wide pockets we use to carry a set of cheat sheets.

The middle has a removable bag that is made of heavy duty mesh. We carry an extra pod, a Juicy Juice box, Glucagon, blood ketone meter and strips. Underneath the mesh bag (along the spine) is a long stip of heavy duty velcro that attaches to a 7 day pill case. My five year old doesn't take a lot of pills, but I had originally planned to slap some velcro on the glucagon and put it there. It fits great in the bag, and I am lazy, so I haven't done it yet, but it is very similar in size.

This is the other side. Along the top there are several loops for test strips and insulin, and behind them is a pocket that fits a small gel pack to keep them cool. There is a perfect spot for our favorite lancing device below, and two large loops that I use for alcohol swabs and our Omnipod PDM. There is also another zippered mesh pocket below.

The thing is a beast. I can pick it up and shake it and nothing comes out. It is very well made, comes with an adjustable strap, and is smaller than a lunchbox. Check the site for dimensions. We got it because we figured it would be good to carry at school, it fits easily in my purse, and it's just pretty awesome. I'm in the market for a patch or something to spruce the front up, but I am happy to have a plain bag because it is so heavy duty and well made. We have been very happy with it.

2. We bought this:

So that when he:

Does this:

We don't do this:

We had been shopping for a waterproof phone case since we got the Omnipod- just to have around for the PDM, and while I've seen a lot of cool ones on Amazon, it took deciding on Saturday night that we were going to go to the waterslides on Sunday morning to motivate me to do it. By then, shipping one to me was out, so I drove 30 minutes to the closest place that had one Sunday morning, and we made it to the waterpark by 11. We used it to hold his Dexcom receiver, which was in his Tallygear belt. (LOVE).

I was really nervous, but we put it inside an extra ziploc bag inside, which turned out out be unnecessary. He wore it all day while he swam and slide and ran around in the water, and not a drop got through it. We avoided the lows we ALWAYS get while swimming, and we had some peace of mind.

3. We bought these labels:

I was looking for some to use for school anyhow, and I chose this site because in addition to sticking onto cups and clothes- no ironing needed- and having a great selection of colors/fonts/shapes they also make a specific Medical Alert label that isn't allergy specific. I couldn't find that anywhere else. The one shown above on the back of his Omnipod PDM is part of the regular school package- I just opted to list the diabetes on this style to label diabetes related things. The medical alert one has a large band through the middle that says "medical alert" and has room for instructions for care.

4. Laminating sheets. Awesome.

Just tilt your head a little to the side there... perfect.

Why yes, I am a nerd. I have used these for Liam's cheat sheets and sheets for teachers the last two school years, and LOVE them. They are super easy to use, require no machine, and are even more firm than normally laminated sheets in my opinion. They come in 8 x 11, 3 x 5, 4x6, and 5 x 7. They have held up great for us on instructions given to teachers, etc. They come 10 to a package, and I found these at Target. Again: LOVE.

Also: say hello to Mr. Dinosaur that Liam drew. Hi, dinosaur! I seriously thought he was lying about drawing it. It seems very detailed for a 5 year old, but alas, it is his. (Totally bragging.)

These are from Target, and are by the Crystal Light to go boxes. We avoid artificial sweeteners wherever possible, but these prove to be pretty awesome when Liam has ketones and I really want him to drink something. He loves water, but when I need to really motivate him, these do the trick. The thing I really love about these is that while they are minimally carb-y (somewhere under 4 a package, but I lost the box... oops!) they are made with Stevia, which I would rather use that some of the alternatives. The apple pear flavor is a big hit at our house. Also in this category: Hansen's Fruit Stix, which are harder to find, but still awesome.

6. Lance 100 calorie packs of Mini Peanut butter and Mini Cheese crackers.

Both come in bags of about 13 carbs, are trans fat, preservative and high fructose corn syrup free, and are just about 1 carb per cracker sandwich, which has solved my great dilemma of what to use to make up the carbs Liam doesn't finish at lunch. Easy to count, and pretty darn good. Just sayin.'

So that concludes my Very Long List of things I like, diabetes style.

Edited to add: No disclosure necessary. I bought all this stuff because I like it and I use it and nobody sent me anything or gave me anything, because who am I kidding, I blog kind of erratically.

Preparing for Kindergarten (in my own way)

2011-08-03T21:45:00.000-05:00

So you know how I asked you all about kindergarten and diabetes back in.... um, APRIL!!!?? Well, you would probably assume that since I was so far ahead of the game, I have it all wrapped up and ready to go for school in 2 1/2 weeks, right?

But in traditional Jessica fashion, I just asked really early so I could agonize and stress about all the details for the longest period of time humanly possible. It's just how I roll. I'm a planner. And a worrier. And have come to generally regard most of the people who we have interacted with since diagnosis- excluding those initiated with the big D already- to be pretty damn clueless about what it means.

Serious tangent:
Not that I can really complain, because until Liam was diagnosed, my "official" bank of diabetes knowledge was The Babysitters Club books I read in elementary school, because one of the characters had Type 1. Yup. Now hold up real quick: if you have not read them and are considering letting a d-kid read them thinking they will be all inspirational and the like- they aren't. The character, Stacey, doesn't get to eat sweets and sneaks them and lies about her diabetes and gets hospitalized. Also, they make her parents out to be really strict and kind of a bummer. And we d-parents don't need any help being less cool. I mean, we carry calculators, right?

Anyhow. My point was, I am on a mission to nail down this plan for school and the 504 plan and all of the related logistics. It doesn't help the matter that I have never had a kid in elementary school and I don't know the staff well (although first impressions are looking GOOD).

And while I do have 5 open Microsoft Word documents pertaining to all the planning, as well as a pile of 504 examples and laws and piles of juice boxes and glucose tablets, I am not quite there.

I'm a bit of a procrastinator. Or so I've been told. I just like to think I work REALLY well under pressure.

So what have I been doing since April, since I have clearly not been writing a 504 plan?

Shopping. It's retail therapy. And it's totally related.

Heck, enough people have shared 504's and all that- how about I just tell you what I've been buying. Tomorrow.

Diabetes in da house

2011-07-30T22:46:00.000-05:00

Tonight, I had a clear view of exactly how much diabetes has affected our house.

Enter scene:

Our kitchen table.

We've just returned from a movie where I sat next to my post-chicken nugget and french fry (ugghhh) dining, M&M coveting 5 year old, laughing it up at the Smurf movie. I had Dexcom in one hand and his OmniPod PDM in the other, watching him shoot from a steady 140 into the ugly 200's while I battled it out with the insulin trying to get him close enough to range that he could actually eat a few M&M's DURING the movie instead of after it.

He's tanking, fast and furious, and is now double fisting Juicy Juices to slow down the drop. (Don't you just HATE estimating carb counts when you eat out at new places?) We're reading two books we bought to read to his kindergarten class this fall, Lara Takes Charge and Taking Diabetes to School.

(Side note: I'm personally leaning towards using Lara Takes Charge, since I'm finding the other one a bit complicated for five year olds, in addition to making pumping sound like a negative thing. I also had a bit of a bone to pick with the wording in the first page or so- something about the pancreas not making enough insulin any more. It just seemed kind of confusing and more like Type 2...)

Anyhow, Liam is coming up nicely, and enjoys Lara Takes Charge. Onto book number two. I hit the first page of Taking Diabetes to School and Liam interrupts me to say "Hey Mom? I thought my pancreas doesn't make ANY insulin, but you just read that it doesn't make enough." Right. My five year old knows WAY too much.

About this time, Peyton, my precocious just-turned-two year old interrupts. She's had enough of not being the center of attention during the low. She starts demanding "Mommy, check my bingers!" as I pull out the meter to re-check Liam's BG. I explain that I need to test Liam now, but she's not having it. "Mommy, I'm LOW. I got 'betes!" Little one scores a juice box, back to the story.

Just another night at our house.

Confessions of a bad pancreas

2011-07-23T23:56:00.001-05:00

It's been quiet around here, no?

Things have been... going. Well, I thought they were. We were seeing a lot of in range numbers. Definitely some out from left field from time to time. Assuming things in left field start with a 3 and have more than 2 numbers.

I'm just going to say it. At Liam's last endo appointment, his a1c was UP. Not down, not even steady but UP. And before you start patting me on the back and telling me that we all have fluctuations and it's not my fault, let me also add: Liam's last a1c was awful. Six months ago we were at 7.4 with plans to go a little lower. Then it was January and February and March and Liam was sick A LOT. He was hospitalized twice with "reactive airway disease" which is almost exactly like asthma but is not called asthma. He had cold after cold, and two of them rapidly turned from a stuffed up nose into gasping for breath and wheezing and his chest sucking in when he was breathing. There were breathing treatments, there were steroids, and there was a WHOLE LOT of big numbers. So when I found his a1c was 8.4 in March, I kind of knew why. He only went to school 2 days in February. It was that bad.

So when I walked into this last appointment after seeing months of numbers I was happy with and a meter average of 170 (and we check about every 3 hours if not more often), I was walking in with a number in my mind. I figured we had to at least be back down to 7.5 after he hadn't been sick in months. I had my "Me? I won the Oscar?" face ready for when the doctor announced the news, thinking it might be even lower... so when he said 8.5, I about threw up. It was not pretty.

Our doctor knows we frequently check Liam, and use a Dexcom CGM all the time, in addition to his pump. I am on top of this stuff. We cruise along and when something funny comes up with numbers over a few days, I make changes. I am a woman of action. We pre-bolus. We are aggressive with highs. We balance the proportion of fat and protein in his diet. His verdict: We are working way too hard for an a1c of 8.5.

I agree. He thinks we've made a lot of changes recently. And aside from our schedule being a bit off since about 7 weeks of the last three months were at 3 different camps with different schedules, not to mention about 10 days in CA on a different time zone schedule, we couldn't come up with much more we could do then to get him on a strict schedule. So if Liam's a1c isn't down in another 3 months, he wants us to seriously think about going back to shots. He admits himself that it isn't going to give us optimal control, but it will remove a lot of variables. (Insert second "about to throw up" here).

I don't want that. I want optimal control. I want my five year old to spend the least amount of time possible exposing his body to high blood sugar and the effects it may eventually have on him. I don't care how hard I have to work to make that happen. Being diagnosed at 3, I know he will spend most of his life dealing with this. Not optimal is not enough.

To make matters worse, he had lost a pound. He hasn't gained any weight at all since last fall. The doctor thinks it's because his blood sugar is spending too much time high. (celiac panel has been normal). While I agree blood sugar may be part of it, I also know (now) that he needs to be eating at least 1400 calories a day for his activity level. (High. Way high.) He was eating around 1000 on a good day. It's not that I starve him. But when your kid asks for broccoli every single day and eats a lot of fruit and vegetables, they get full on less calories. Hello, fiber. So now, we don't just count carbs. We count CALORIES too. You don't even want to see my mealtime notes. I'm just relieved I'm not mixing the two up.

We've tried supplementing with Kid Essentials shakes (270 calories, I believe) but find those spike him like crazy. We've had to bolus him for double the amount of carbs to bring him back into range. Even then, not ideal. But neither is loading his plate up with extra butter and cheese. I'm really not sure what to do.

We tightened up his ranges for his goals and lowered the level we correct at on his pump hoping that will help, but to kick off our new battle against the a1c, he gets a cold. One of the awesome ones that requires breathing treatments. More highs. (Insert sigh).

I'm kind of suspicious it had something to do with our switch to Apidra right after his last hospitalization in March, but his doctor doesn't want us to switch back to Novolog just yet- he says they are all clinically the same in his experience (including his own, since he also has Type 1). While I like that his Dexcom graph shows more rolling hills and less spiky mountainous lines, I'm not sure if it's the best for him. I can't quite remember how long it took him to come down from the 200's or above on Novolog now, but with the Apidra, it doesn't start moving until about 2 to 2 1/2 hours for Liam. I know I noticed it, so the Novolog must not have taken that long. It could explain more time spent high when we do get the "left field" numbers, but who knows if it's just me or something else entirely.

So, that's my confession.

When it gets hard, it's my tendency to turn inward. I have a bit of a strong-woman complex and I can't seem to accept help from anyone. I started this post two weeks ago and then walked away from it. Such is the story for most of the last several months of very little posting. It isn't easy for me to say these things. But I miss the DOC. I'm feeling alone, and it's my fault. I know I'm not. So here it is.

Apidra: I need your help.

2011-04-09T15:48:00.000-05:00

We finally decided to crack open one of the bottles of Apidra that has been sitting in our refrigerator for, oh, I'd say close to a year. That decision was based on a lot of things: the post-meal spikes we were getting (often up close to 300), an A1C that was MUCH higher than I was ready to hear after basically two solid months of viruses and antibiotics and steroids and breathing treatments and doctor visits and hospital trips that he usually brought home new viruses from. The biggest push was that after this last virus, where he was hospitalized overnight and given a 4 day course of steroids- basically ALL of his pump settings weren't working and needing tweaking. We figured since we were basically starting from scratch... why not?

But now? WHY? What? What is happening? It's been about a day and a half and his usually flat night time line on the Dexcom is distinctively jagged. He is eating meals, staying pretty flat for the first 45 minutes, then taking off into oblivion. He turns around faster than I expect, but then he is crashing hard where he's never crashed before. His basals are bottomed out at those times, and I don't know what to do. It almost seems like we're seeing more of a tail on the Apidra than we did on the Novolog.

His overnight basals all need to be raised, his correction factor seems to not be working (or else his basals are set too low), and we're still seeing pretty huge post meal spikes.

I know it takes time and tweaking, but seriously, is this normal? Is this just a bad match for us?

I really would love to do some basal testing, but he's apparently decided to have a monster growth spurt and need to eat everything he can get his hands on, so that isn't looking too good for me.

My instinct is to raise the basals and decrease the carb coverage at meals, since he is crashing so hard, but still spiking, but I don't think I even know where to start.

Any ideas? I really want to hang in and see if we can make this work, but I'm getting desperate here.

I'd post some Dexcom pictures but what I'm looking at right now is more of the "sugar free Jello has a blue lid, not a red lid" variety than Apidra craziness. 17 carbs, not 0.

One year

2011-03-01T00:22:00.000-06:00

As I listen to the static-y breathing of my almost FIVE year old over the baby monitor as he sleeps upstairs, I am blown away that it has already been one whole year since we started podding (and more importantly, pumping at all)! A year ago, Liam had his last shot of Lantus. A year ago, that second glass of milk meant an extra shot. A year ago, we were tentatively taking the first steps of our journey that scared the living daylights out of us. We were hooking our then 3 year old's body to a device that we expected to keep him alive, a device we expected him to wear, in some form or another, for the rest of his diabetic life. We were scared. We were excited. Hell, who am I kidding? We were up all night cramming over Pumping Insulin, scared that we may not pass our "test."

We were lucky enough to be all of those things with Laura and Nate, who were right by our side as we took that huge step in that training room at Children's. Looking back at those pictures now, the boys look so little. I am always shocked by how much older Nate looks every time I see him, and I straight CANNOT believe that next Monday, Liam will be FIVE. That can't be right.

But then I remember that yes, it was one year ago, days before his fourth birthday, when we intermittently loved the pod or else were threatening to chuck it into the field behind our house. And it was on his birthday that we finally started to see the numbers we were looking for. Cake, bounce house and all!

It has been one heck of a ride. In the last year we have watched as the OmniPod has given Liam more freedom. It has given us back some spontaneity. Some of the "carefree" his childhood was missing on injections. You want to eat snow ice cream at 9:30am? No problem. Pizza? Watch me work some extended bolus magic. It has not always been easy, but not having to draw up insulin and inject him several times a day has removed some of the medical feel his life had taken on. It makes me so grateful to live in a time and place where this kind of technology is accessible.

Our life may be a heck of a lot beepier, but to be fair, it's more often the Dexcom or my neglected laundry/dishwasher/dying phone battery/etc.

Thank you to you all for your support, and most importantly, thank you to Laura for knowing exactly what I mean (most of the time) when I ramble. And also, for reminding me of our one year anniversary and give us a legitimate excuse for the cupcakes we were already going to make today. What?... we're CELEBRATING!

Kindergarten: this is where I begin spiraling into an over-analytical blur of crazy

2011-02-10T22:37:00.000-06:00

A few days ago, I went to a kindergarten preparedness meeting at Liam's preschool, expecting to learn what I need to do to prepare HIM for kindergarten in the next 6 months. Instead, I was the mom hyperventilating while the speaker talked about all the ways kids can fall through the cracks in such a bigger class in a bigger school. There was an audible *gasp* (totally me) when she mentioned that there will be a day when there is a substitute teacher who will not know your child and will attempt to feed them peanuts when they are severely allergic. You know it ain't peanuts I'm worried about. Those words have haunted me since.... "substitute teacher." (Insert shudder).

So ever since, I've been stirring my big pot of angst-y HOLY CRAP what am I getting in to and trying to figure it all out.

This is our first kid going into elementary school. I'd be worried if he didn't have diabetes. There is a whole lot of new and uncertain and I don't always love those things. Or ever love those things. Don't get me wrong. I am a planner. I will spreadsheet and list and flowchart my way out of the stickiest of situations. I know we can do this. But I don't even know where to BEGIN. Where do I begin? Seriously?

I know we need a 504 plan- and I know where some really helpful stuff to get us started is- thanks to some awesome D-Mamas pioneering the whole "school" road for those of us who have not yet had to. I just don't want to mess this up. Kindergarten registration is next month, and the school nurse, who I talked with on the phone a couple of months ago, said to call her and set up a time to meet as soon as we are registered.

She seemed very helpful, but at the same time, I don't want to come into this unprepared and be pressured into anything that isn't just right. I don't want to get a 504 plan in place to find that it doesn't work smoothly and then jump through a bunch of hoops to change it. I don't want to set the wrong precedent. And truthfully? I don't KNOW what we want.

Do we want him going to her office for everything? Or testing in the classroom? Do we want separate kits in every classroom or office he will ever be in? Or do we want him to carry his bag everywhere? If he carries his bag, what does he do with it when he's playing? Does someone else hold it? Do we still bolus him before he eats? What if he doesn't finish everything? What if he decides he NEEDS to take a 20 minute dump 5 minutes after he's bolused? (like he does every. single. day.) What if he comes back and his 30 minutes of eating time is up? Or a teacher threw his food away because they thought he was done? What about ALL the teachers he will have? On the kindergarten schedule he has his own teacher, special group work possibly with the other 3 kindergarten teachers, a music teacher, computer teacher, and a PE teacher. When and how do we train ALL these teachers? And what do we train them on? And oh my WORD, P.E!!!!????!?

I keep thinking back to an analogy the speaker used during her presentation. She said that if our kid dropped a mitten or left their coat outside while they were playing at preschool, the teacher or even the front office staff would recognize it and put it back into their backpack, but if that happens at elementary school, it's going to end up in a huge bin in the back of the cafeteria. That really just made it hit home how much bigger of a pond I'm dumping my little goldfish into. It also made me go home and write his name in his coat. Oops.

Every single teacher and staff person at our private preschool knows Liam and knows he has diabetes. Even the parents who volunteer at carpool know that the little camo lunchbox looking thing is NOT his lunch and needs to go straight to the front office. We are in a cozy (albeit not medically trained) little bubble. We have a system. They have laminated sheets in several different formats outlining EVERYTHING they need to know. I'm scared to leave.

Where do I start? Please help me, oh wise ones. :)

This is why we had to sign a waiver.

2011-01-27T09:53:00.000-06:00

I've mentioned how awesome Liam's school has been at working with us to accommodate his needs. They are a private preschool, but they have continued to surprise us with what they have taken on. The main staff person taking care of his diabetes is so awesome that I am heartbroken that she won't be coming to kindergarten with us next year. She has gone above and beyond so many times that I am literally speechless.

While she is great, credit is also due to the director and owner for even allowing the staff to provide any of his care while at school. It is because of them that we get to keep his life the same as before he was diagnosed. They are certainly less hands-on with his care, but every other week when the main person is off, the director often takes over his care. Deep breath.

I really like her. I appreciate her. She takes time from her busy schedule to read to him when he is low and stuck up in the office. She follows him out to my car on days where he has had issues. But her brain works in less of an organized way.

I first got concerned when she forgot to call me before correcting him one day. We had arranged a phone call if he was over 200 so I could adjust his correction down to prevent a low at school. He got a bit more insulin than he needed and a pretty fast and furious crash followed by a stubborn low followed. I reminded her to call if he was over 200. Put a note in his diabetes kit, next to my already overly detailed directions.

The next time I got concerned was when she REMEMBERED to call when he was over 200. I was walking her through the steps to bolus him, and when we got to the part about the carbs he was eating, she said "so I put in the 25 carbs for his snack..." NO!!!!! Not 25! 15! Always 15! Every single TIME, 15 CARBS!!!! We used to do 15 carb snacks before he went on the pump and they were uncovered. When we switched last spring and started pumping, I decided to keep the snack amount the exact same to keep confusion to a minimum. Every day, he gets a bag full of whatever his class is eating. The difference is: I measured his at home so that it is EXACTLY 15 carbs, and then labeled it with a sticker that says: 15 CARBS. So when she said 25- I seriously hoped she knew that was wrong as soon as she said it. I reminded her that ALL snacks are 15 carbs, unless it's a special birthday snack from his classroom- which I will come look at and give her a number to use. Another note in the meter case.

The next time, it was a special snack coming into class. The regular person emailed me the day before to figure out how many carbs we wanted to bolus him for the next day, and I emailed back that I agreed with he assessment. We were going to go with 11 carbs. The director was cc'd into the email, knowing she would be checking him the next day. An hour or so before his snack time, I called and spoke with her to make sure she'd gotten the email and to remind her that we were doing 11 carbs today because of the gingersnaps. She said she saw the email, and that everything sounded great. When I picked him up, he was already lower than I'd like. I checked his pump, and was surprised to see she'd bolused him for 15 carbs. So she remembers the normal amount today (yeah!) but not our conversation an hour beforehand (ummm?).

Last week, everything went according to plan. She called when he was slightly higher than expected to make sure she should proceed normally. I agreed, and we hung up. I got a call an hour later, about 15 minutes before pick up time saying he was 70 with two arrows straight down on his Dexcom. I told her to give him a juice box and I was already on my way. When I got there, she was baffled about why he had dropped so fast. I gave her the "diabetes doesn't always make sense line" and put Liam in the car. Then I checked his pump. She bolused him for 25 carbs. Nearly TWICE what he actually ate.

I just don't know what to do. She isn't required to do ANY of this. From the beginning, I've been cautiously detailed in explaining what CAN happen. How serious it all is. I wanted them to feel the gravity of the situation, but not be so terrified that they wouldn't touch him. I've talked to her, left notes, and I think she just forgets things sometimes. As wonderful as she is, she is a little scatterbrained. This all has happened over the last YEAR. It's not every week that we have an issue. Not very often, considering. But even one time is too often, isn't it? I'm lucky that pick up time is barely more than an hour after snack time, so usually if something funny is up, I can catch it before it becomes serious.

All the same, all of my anal retentive plans and systems to avoid exactly THIS, is failing.

What do I do?

Flying panko

2011-01-12T00:44:00.000-06:00

Sometimes, it feels like a BIT much.

I mean, when we are baking Christmas cookies and I am carefully trying to contain flour and sugar from flying around my kitchen, knowing that they have been WEIGHED and MUST NOT BE COMPROMISED... that's one thing. When I seriously consider weighing his apron to see how many grams of flour made their way onto it before calculating the carb count- which I know, probably sounds like the height of crazy- it's okay with me. It's worth the work. To watch my amazing four year old son bake cookies at Christmas- to watch his face as he bites into a cookie HE MADE- it's worth making my kitchen look more like some kind science lab. There is a payoff there.

But tonight? When he wants to help cook and take ownership of healthy food that is part of his healthy diet? We were making these baked breaded asparagus sticks and he was helping to roll them in the breadcrumbs, and all of the sudden, his dirty hands fly up to his shirt to brush them off and whole wheat panko breadcrumbs are flying EVERYWHERE and my voice catches in my throat as I'm about to yell "Liam, NOOOOOOO!!!" across the kitchen and suddenly I want to cry and order pizza instead. Which I would totally do, if pizza wasn't a guaranteed ticket on the no sleep tonight train.

Deep breath, some (very) rough calculations, and a good 10 minutes later and the crisis was averted. Not without a bit more thought about what kind of dinner I could just BUY, but we made it through. The payoff certainly didn't feel as big if he was biting into a cookie... I mean, as much as he loves vegetables, whole wheat panko doesn't quite rank with chocolate chips. I know that as important as it is that he has the memories of being a kid, it is also important that he continue to enjoy eating the healthy diet he ate before diagnosis. Even more important now.

It is so dang hard to balance sometimes.

A not-so-gentle reminder

2010-12-10T19:58:00.001-06:00

Tonight, while driving home from dinner and cupcakes, Liam called from the backseat to tell me he was low. Though I found that HIGHLY unlikely since he was barely bolused for dinner- let alone the cupcake- I decided to pull over and check him. He's spent much of the last two days with his pump turned off, guzzling juice box after juice box while barely cruising along at 100- so I wasn't going to chance it. Dexcom said 297 and dropping, but I pulled over and parked the car so I could crawl into the back and negotiate the strips and meter since it was already dark.

I wiped his (cupcake-y) finger clean with the alcohol swab, let it dry, and poked his finger in what is probably best described as some sort of daze. Not to say I wasn't paying attention, just that I was approaching the task from a place of routine that is so repetitive that I didn't flinch when I saw the blood. We can't, right? I can't allow puncturing my son's flesh multiple times a day to paralyze me with grief. If I did that, I would miss all the good moments in between: the look on his face as he gets to dive into the cupcake, as he runs back out to play even harder.

So it wasn't the blood that made me flinch. It was the tiny, but resolute voice of my 17 month old daughter sitting in the car seat next to him that perked up at the sound of the lancet and said "ouch!" I looked to her, and again, she pointed at the lancet hovering over Liam's finger and said "oh, ouch!"

In her short little life she has had her blood sugar tested maybe 5 times or so, and only a couple she might remember, but in that tiny little chunk of experience, she has already registered that the lancet that I figured she could barely feel set at "1" is equal to "ouch." Wow.

The look of concern and compassion on her face stunned me. While finger-poking may have been a battle in the beginning, now over a year later, Liam doesn't usually even react. That isn't to say it doesn't hurt. If you ask him, he will tell you in his way too wise 4 1/2 year old voice that it does.

In all the repetitive tasks we do as parents managing diabetes, it is easy to lose sight of what we are actually doing. Things that once seemed barbaric and unnatural become part of a routine, and before we know it "pick a finger" becomes just as common as "put on your shoes" or "wash your hands." I don't resent that it has become routine to us. That is a necessity. It is what allows us to move through it quickly and get on with the good stuff.

But the reminder Peyton gave me tonight broke the haze just long enough for me to remember: it still hurts.

Hi.

2010-12-08T15:50:00.000-06:00

So I didn't get swallowed up by laundry, but September 22nd- aside from marking the end of one year of diabetes in our life- got a heck of a lot more complicated. Big stuff happened, and then some really lame stuff happened, and that is not at all why I am here. (Although there is another post in there somewhere.)

I just wanted to check in and say how grateful I am for the things I have in my life. My beautiful, awesome kids-yes. My hardworking, always making me laugh when I need it husband- definitely. My family, my friends, the food on our table, the roof over our heads- of course.

But in the face of diabetes, which let's just face it- sucks- I have some awesome things that I just want to recognize.

1. A support system that can not only listen to me rant on and on about blood sugar spikes and basal rates, but can make me laugh so hard that I am within inches of actually peeing my pants as a grown up. I feel so incredibly fortunate to have not only tapped into the support network here online, but to have also found such great friends so close to home. Whatever sanity I do possess, it is because of you all.

2. A dedicated team of teachers at Liam's preschool that take this seriously enough that I know he can go to school where he started just a few short weeks before his diagnosis last year. While his teachers last year were helpful, I am blown away by one in particular- Ms. M- who takes the time to notice when Liam drops so much as two fruit loops at snack time, then actually takes the time to grab another premeasured bag of them to give him two more, then thinks to return the bag to me to tell me it is no longer 15 carbs. The first time this happened, my jaw DROPPED, because in all of last year, this never once happened. I can't believe my 3 year old didn't drop one piece of food last year, but I never heard about it. She has gone to the trouble to put together a set of photocopies of the backs of packages in advance when they are using food during the science portion of class- so that Liam could taste for himself the difference between salty, sweet, and sour. I am so appreciative that he gets to be a normal kid in class, even if there is extra work going on behind the scenes to make it happen.

3. The MOST awesome front desk person turned super stand-in school nurse at his school who has not only volunteered to learn to test Liam's blood sugar and bolus him, but takes the initiative to peek in on him before he goes out to recess and call me if he's dropping to see if he needs a glucose tablet or two before he goes out. She reads him stories when he's low and can't sit in class until he's re-tested, she calls me when special snacks come in and helps me google Taiwanese almond crisps to see what they might possibly contain so we can estimate a carb count when a pan of homemade ones come in. She is indescribably awesome- and a big part of why Liam is in preschool. This is a private preschool, and NONE of this is her job, yet she donates to his JDRF walk team and tells me how amazing he is and how much she loves getting to be a part of this.

4. In the face of all the worries I have about transitioning him to public school next year when he goes into Kindergarten, and a full day, and new staff, and dealing with an honest to goodness 504 plan instead of just the kindness of school staff with no obligations- I was able to call and talk to the school nurse, who was AWESOME, who then told me that one of the kindergarten teachers has Type 1 herself, and that we can request to get him into her class. But even if we don't do that- the entire school faculty and staff work closely with her and are familiar with this whole song and dance.

Woo hoo!

Today is the day.

2010-09-22T15:00:00.000-05:00

Here we are, less than 24 hours since we made it back from our trip to CA, and we are greeted with
a) two kids that do not know what time zone they are in, or will be sleeping in
b) a bill for $670 for test strips that were apparently shipped a few days early and were therefore *not covered* even though they SWORE they would be
c) a pancreas that decided to further it's journey to total crapped out-edness while we were in another time zone for 2 weeks, therefore leaving us with an almighty MESS of basal changes that may or may not apply to the time zone we actually live in
d) two family members flying in tomorrow for the walk this weekend with exactly ZERO sets of clean guest sheets
e) expired milk
f) promise of approximately 100 JDRF Walk t-shirts that "have a little formaldehyde in them" that should probably be washed before the walk that are hopefully arriving less than 24 hours before the walk.
g) a day that one year ago, saw Liam in the hospital being diagnosed with Type 1 Diabetes. A day that means so much and so many things to me that it warrants more than just a side note on a list of crap. Stay tuned. If I don't get buried under laundry before tomorrow, I'll be back!

Now, coming at you live...

2010-08-31T00:00:00.001-05:00

..........this update of "Sticking it to Diabetes" is brought to you by the numbers 3, 6, and 2 (!!!) and the letters W, T and F!

Just when I'm sure his pancreas is finally crapping out for good after a two days worth of carb craziness something along the lines of : 1 unit of insulin to something other than 32 carbs, since that suddenly launches us into blood sugar oblivion... While I am analyzing trends and figuring out my next move-BAM! Suddenly, I can't keep him above 100. He's going low an hour after meals. We feed him, and I watch his Dexcom for the familiar spike and... nothing. WHERE DID THE CARBS GO? I gave him roughly 50 grams of uncovered carbs today, and at least 40 last night. He stays low, low, low, 300! Low, low, low, 310! 362! Mayday! Mayday! Now, pod change night and we've catapulted to 362!

Perhaps his pancreas is having it's last hurrah? I do not know.

What I do know is that Sticking it to Diabetes is turning into more of Diabetes Sticking it to Liam's Mom. A name change I was not consulted on. I suck right now. I'm lame. I say lame stuff. I see friends and I am so boring and not myself around them that I want to go home. To put them out of their misery. Not only do I suck, but I suck equally across the board. I don't even do one thing great. I am spreading my mediocrity across all aspects of my life and I am just over it.

If I've been quiet, it's because I'm in a funk. It started with my laptop crashing on me, and suddenly not having easy access to the online diabetes community or the moms I've come to love like family from the blogging world. I started to drift off, and I got blindsided by a whole plethora of emotions I didn't know I had lurking around. Anger. Resentment. Jealousy. Not good stuff. Not me.

I found myself at a fundraiser the other night for my son. I didn't organize it. A woman from a mom's group I joined that I was barely acquainted with surprised me by not only joining our walk team for the upcoming JDRF walk, but recruiting others. She is generously donating 50% of the profits from her own business to our team, and is just generally being INCREDIBLE. She hosted this fundraising night along with two other businesses that she told about my son who also wanted to contribute. Amazing.

I was only able to stop by for a little while, but when she called everyone's attention to me and asked me to speak to this (smallish) group, I was caught unprepared. I stood to talk to this group of strangers, expecting to tell the story I have so many times already, and not two sentences in, I started... CRYING. That's right, crying! You totally understand, right? The thing is, in all the times I've told this story, I have NEVER cried. Never in front of anyone but maybe my husband, and maybe Laura and Joanne one time, but it was more of a mist than a cry. I can count the number of times Liam's diabetes has made me cry on both hands. In one year, I have cried less than 10 times. And in front of these strangers, I lost it. Wherever it is that I have pushed the rawness of this- deep underneath the basal patterns and carb ratios and the stony sarcasm- I just blow the lid off that sh*t.

I have spent so much time buckling down and pushing on and being optimistic and generally just being a blood sugar slaying robot- that something as simple as crying sent me for a loop. I barely heard as the next woman stood up and talked about her niece who had been diagnosed with diabetes as a child and told everyone how her niece says that it's horrible because diabetic kids can't do something as simple as have cake at a birthday party, and how she felt like she might as well be "retarded" (not a word I would approve, but I'm quoting here). My eyes glazed over as she described how that niece had just had a baby and how overjoyed they all were that the baby wasn't born with diabetes. (My eyes may have been glazed over, but one eyebrow was definitely raised and you all can join me for the eye roll). Another person stood to speak about how her father in law had died due to complications from diabetes and being overweight and how her husband had just been diagnosed and how we have to beat diabetes.

By now the glaze in my eyes had dissipated and I was wondering how PC it would be to launch into a tirade on Type 1 vs. Type 2 Diabetes. vs. "the bullsh*t other people who only know someone with diabetes say when they don't know what the HELL they are talking about" while in the middle of a fundraiser being hosted for my son by a bunch of moved and generous strangers. I wait for an opportunity to open my mouth but I realize I am just TOO TIRED and DRAINED to do it justice. I mentally take names and plan to pull people aside at the walk to set things straight.

I go home thinking about all the things that were said that were wrong and not the spirit of the event. I go home thinking of every spelling error I ever noticed in a walk video when I should have been crying. I go home thinking that I am tired. I am losing myself in diabetes.

I can't see the humor in it anymore. Whenever I used to talk to people about it, they'd marvel at how positive I was. How clearly I could see the silver linings. I've noticed that I don't see them anymore, and consequently, I don't talk to people about it anymore. I can't even come here and blow off steam without the self-loathing kicking in two sentences in and deleting the depressing crap I don't want to look at anymore. I don't know how I got into this dark hole, but I am clawing my way out. This isn't me. I'm not going down this easily.

What's wrong with everyone?

2010-08-17T22:24:00.001-05:00

Not much has changed. I'm still here, and I'm still mad. And I'm even mad about being mad.

I've never been an angry person. I've dealt with a lot of crap, and I haven't let it get to me, for the most part. I've never been one to hold grudges. My college degree is in psychology. I understand grief. I get that this is part of it. I just don't have time for it. Go away, grief.

Part of it is that this year, we are participating in the JDRF Walk for a Cure. As great and positive as it is, and as good as it feels to DO SOMETHING, it's intensifying things. I take it so personally. We sent out this letter via email with a link to our website and our walk video, and in the words of Laura, "...crickets..."

Don't get me wrong. We didn't expect every single person to write back. We certainly didn't expect most people to donate. Or to join our walk team. And we have been blown away by the number of people who have. It's the people who haven't so much as mentioned it that we were sure would. Family. Close friends. And it's REALLY getting to me.

Mainly because we made ourselves so vulnerable in all this. Since Liam's diagnosis, we've done all we can to maintain our image of strength. I can't say whether it's been more to convince the people around us that we can handle this, or to convince ourselves and our precious little boy. Probably both, to different degrees. We don't fall apart. We don't complain much. We just do what needs to be done, and forge on. On top of that, we live hundreds of miles away from the family and friends we have known our whole lives. Most of them have seen us twice since Liam's diagnosis, if that. They don't see us aging as we go night after night on hardly any sleep. They don't watch us as we work frantically behind the scenes doing all the things we do as pancreases- before we even get to be "parents." They don't hear the heartbreaking questions Liam asks us. They don't know what this "type 1 diabetes" thing is. So more than I wanted their support, their sympathy, I just wanted them to KNOW, as much as they can, what it is we DO around here.

So when all was quiet after our letter, after it was posted on facebook a few times and we STILL hadn't heard a thing from most people... I started to stew a little bit about it. When my husband got a page up on facebook for our walk team and supporters, I sent the invites out to several of these people. A couple surprised me. Most did not.

One, in particular has me especially angry. This girl and I were inseparable the first two years of our boys' lives. We started to grow apart when I had to go back to work, and then we both moved away. Things just got busy and the calls became fewer and further between. Nonetheless, this person is A) Human. B) A mom. C) In possession of a little boy who is 2 weeks older than my son, who does NOT have to worry about diabetes.

When her son was diagnosed with a slew of overwhelming food allergies at 2 years old and she was a mess, I took time out of my lunch break to go grocery shopping at specialty stores and brought her bags and bags of groceries that he COULD eat when it seemed like everything was about to change and he couldn't eat anything. Because that is what friends DO. And with everything we are going through now, she can't even click "like" on my damn facebook page when explicitly invited to. It just ... I don't really know. I'm hurt. I'm angry.

And it's not just her. It is taking every ounce of willpower to not just go through my friends list and scream "UNFRIEND!!!!" while deleting each and every one of them who won't so much as click a box for me. For Liam.

I feel so isolated as it is. And this JDRF walk has made it so glaringly obvious how removed I've become from my friends. My old life. These people feel like strangers.

Mad.

2010-08-04T11:58:00.000-05:00

I don't know what changed. I don't know why it's now that I am getting angry about diabetes. Lately, I have more and more moments where something happens, and instead of being just sad, I'm mad.

The other day I took Liam out to lunch, and while we were waiting for our turn to order, the woman at the counter in front of us ordered her son's lunch. When she ordered milk for him, the little boy, who was about Liam's age, threw an almighty tantrum, screaming that he wanted CHOCOLATE milk. His mom changed their order, the boy calmed down and they left.

We got up to the counter, and I ordered Liam's (white, plain, boring) milk. And he didn't complain. He never does. He rarely says a word about the french fries I go to great lengths to avoid. We go out and he sits by his friends, eating his food, and he doesn't say a word about what they get. He doesn't even ask. And while a tiny part of me is grateful that he's so easygoing about it, lately, most of me is just mad. I want him to throw a tantrum. I want him to ask for the chocolate milk. I know he wants it. And when he doesn't ask, it tells me that he knows. He knows those foods make him go high and stay high. He stops being four for a minute, and worries about what is better for his body. And it kills me.

It makes me angry when I have to test his blood sugar, and I got to look for a finger that doesn't look quite as abused, and I can't find one. It makes me angry when I sneak into his room first thing in the morning to check him, hoping he's holding steady so he can sleep just a little bit longer, and mid-check, he rolls over and says "Hi Mom" in his sleepy little voice, and I have to live with knowing the very first interaction my son and I had wasn't a "good morning" or a hug, it was me making him bleed. What a crappy way to wake up.

It makes me angry when he sits down to eat his favorite foods and he stops to make sure I've bolused him and asks if he can eat yet. It made me angry to hear my husband describe the way he nodded in understanding at the little girl speaking at our JDRF kick-off event as she described being high, and not being able to start eating dinner with her family. It means that when he's too high to start eating dinner, and I put on my best fake accent and carry his plate high in the air to the table and present him with a plate of veggies and tell him his appetizer is ready, holding off on the carbs until his insulin has had a chance to bring him down, I'm not fooling him.

Despite my best attempts to let him be four years old, diabetes is making itself comfortable. It's becoming routine. While I know that his acceptance is not necessarily a bad thing, it makes me angry.

It isn't fair.

Liam's 2010 JDRF Walk Video

2010-07-28T22:03:00.000-05:00

Things I haven't been writing about

2010-07-20T16:20:00.000-05:00

From my pile of hibernating "drafts," before it becomes completely irrelevant:

It's been busy lately.

A couple of weeks month ago, Liam had his endo appointment. Our A1C dropped a measly 0.1, but I can't say we expected much better after his round with strep throat and antibiotics. The doctor was happy with his numbers, which is more than I can say for myself. Overall, he had been spending a lot more time in goal range, but we were having daily lows and highs beyond what I was okay with.

I tried talking to his doctor about a solution, but found that although the CDE's at our group and the NP he sees every other visit can download the PDM for Liam's OmniPod to get all of his logs and reports, our doctors aren't familiar with Co-Pilot, the system his pump uses and they had to use the printouts I'd brought for my own reference to get an idea of what was going on. Not a problem, since I had them with me, but I would have enlarged the print if I'd known they weren't going to do the download they'd done at every other appointment since we started on the pump.

With my reference sheet out of my hands, I felt even more disorganized in my thoughts. I think when I talk about Liam's diabetes, my sense of being overwhelmed is very evident. I wouldn't say it's predominant in how we manage his day to day life, or even his diabetes in general- but when I try to talk about it, or explain problems we are having, I get overcome by the details. My brain gets way ahead of my mouth, and I stumble around trying to verbalize the relationships between his basal rates and ratios and corrections until I'm sure I sound as crazy as I feel sometimes. It makes me frustrated to not feel I am communicating effectively- especially about something so important. I wish they could download my brain.

My babbling led to the doctor asking how we were sleeping, which led to maniacal laughter, which led to the doctor suggesting we were too stressed about all of the variables of the pump and maybe we should consider going to back to injections. While my immediate reaction was probably more along the lines of thinking HE was crazy- I can really appreciate that he takes the parents ability to cope and stay functional seriously- after all- our child's life depends on it. If we were the type who were actually overwhelmed beyond all reason- that suggestion could have been a good thing.
That said, I am a control freak. I have a love/hate relationship with all the variables a pump entails, but it isn't an unhealthy one. We can still laugh at ourselves, and I think that says a lot. (Even if it is maniacal laughter).

Anyhow, we left the appointment feeling we'd made little progress and having learned nothing new. While we were happy that the doctor was happy with things, it was unsettling to leave feeling we had more to accomplish and being given no more direction on how to move forward.

I don't think it was any more their fault than ours; we had an afternoon appointment that ran up until 5:00 PM, and while we explained everything we felt was important to the fellow working with our doctor, she then went to discuss things with our doctor before returning with him. Not all of the points we'd discussed with her were addressed, and it wasn't clear to me what she had told him and what she hadn't. I really like her, but the whole format was weird.

After that, we decided to take things into our own hands. Well, things were already in our hands, but after trying to talk with a CDE about his issue and then coming out of his appointment with no real answer, we decided to see if we could figure it out on our own.

My biggest problem was that after Liam's bout of strep throat, his sensitivity to corrections doubled. Meaning before, 1 unit would drop him 200 points, and after he finished his antibiotics, 1 unit would drop him 400 points. We certainly hadn't expected him to start needing LESS insulin as time went on, but what was really weird is that not one other thing changed. He didn't seem to be more sensitive to his basal or bolus doses. It's all the same insulin- so that doesn't make sense. His settings were skewed disproportionately so that while he had the lowest basal rates of the day, he was getting the most insulin per carb, and there were insulin tails flyin' this way and that and tiny corrections dropping him 400 points- you get the picture. Messy. Most of the time things were working, but with his basal being as low as it could go- he was still going low. I read some things and talked to some people, and I started to doubt myself.

Enter mathematics and logic. (Don't worry, they're leaving soon...)

Long story short, we jumped to a radically different set of pump settings that made sense mathematically but had almost no actual correlation with Liam. Go figure. So we gradually eked our way towards something that worked a little better, one tiny bump at a time. And what do you know... we're basically back to where we started. Only now we're short 50 or so test strips until our shipment comes in August.

So you mean to tell me that diabetes, while making liars of everyone who told me algebra was a waste of time that I would never use in REAL life (HA!) and making me mumble numbers under my breath like a crazy person- actually has very little to do with mathematics in the long run? Or logic?!!?

Dexcom

2010-07-12T20:36:00.000-05:00

So we jumped on the bandwagon and decided to try this sucker out. We were able to arrange a trial with our local rep so that we could see if Liam would even tolerate it. We were lucky enough to be able to start this journey with Joanne, Fred and Elise-which made the whole thing a lot more fun and less scary. (For the kids and the grown ups).

We currently have Liam on the OmniPod, so he's not used to having to carry or wear anything. When we were first considering this, we really struggled with the idea of him wearing a medical device that he actually had to lug around. It's hard seeing an insulin pump on your kid, but we've felt fortunate to at least be able to use a tubeless pump that doesn't get in the way. It's one less thing HE has to deal with. This CGM (Continuous Glucose Monitor) has a range of about 5 feet (barring the odd piece of clothing or particularly dense gust of wind, as we discovered). That means he's carrying it on his body.

Up front, my husband and I tried to prepare ourselves for this. We knew that Liam was a great candidate for a CGM since he has a lot of variability in his blood sugar levels, and since he has had several lows recently below 50. Yuck. He doesn't consistently notice those lows until he's around 50 or below a lot of the time, although he is getting better. We also know that we are nerds. We LOVE information. We knew that once we got this thing on him, we were never going to want to take it off. We discussed how we could see ourselves using this device- as a TOOL. As much as we wanted to know everything, all of the time- we really wanted to approach this as a way to check in every month or so to make sure Liam's pump settings were helping to maintain a steady blood sugar. As much peace of mind as we know it could give us, we just worry that it's unfair to put him through more medical stuff so we can sleep at night.

So how was it?

The first couple of days, it felt like I was totally cheating on Liam's PDM (remote to his OmniPod). We usually have a hands-all-over-each-other kind of relationship. And we have battery stash to prove it. With this new toy in the house, it was all I could do to not stare at this thing every 5 minutes (and sometimes every 2 minutes to see if it was a new 5 minutes yet). While the numbers was within 40 points or so most of the time, it was the trend arrows that were invaluable. It caught a low I wouldn't have ever suspected right when he hit 80 (and his meter said 81). It was a particularly aggressive one, and out of nowhere, and I was thankful for the guidance. The sensor survived several rounds of swimming and slip-n-slides before falling off on day 5, but to be fair, I probably should have taped it by then. When it came off, we had a tiny little dot left where the wire had been (but again, day 5, not 7). We've definitely had pod sites that looked much worse after 3 days. The sensor didn't bother Liam.

Sometimes we lost signal when he was sleeping on it- but usually for brief periods of time. He didn't seem to mind carrying the receiver in his cargo pockets, although it made it clear which shorts were a little too big, because the extra weight would bring them down if he got past a leisurely walking pace. We were pleasantly surprised. I even watched him break into an older group of boys playing some kind of outer space police force game by flashing the monitor and telling them he was a not just a policeman, but a SUPERHERO- to which a particularly amazed looking boy told him "Wow! Come with me!" Not bad at all.

If I had any hesitation, it's not what I expected it to be. I thought he'd feel burdened by carrying it. I imagined it as a physical albatross he was being forced to drag behind him- but it wasn't like that for us. He misses it. The problem was more what I saw it do to him.

We've been very open with Liam about his diabetes. But we've also made it clear that he can do whatever he wants to in life. We see him first as a four year old boy. For that, we've made it our goal to make it as small of a part of his life as is reasonably possible. We monitor him closely. We work behind the scenes as much as possible so that he can just be a kid sometimes and not worry. Don't get me wrong- he knows exactly what we're dealing with, and he knows how his pump works and knows that we need to weight and measure his food and count carbs (he even knows it is a REALLY bad idea to say numbers out loud when mom is doing that!).

So while we cut back on one of the most invasive parts of his diabetes- the finger pokes- we replaced it with more of a mentally invasive one. Every time the alarm went off because he was falling or rising or high or low- he'd come and tell me he was buzzing and beeping with a worried look on his face. The numbers I love every 5 minutes meant that at times, he was thinking about his diabetes every 5 minutes too. I had a really hard time with that part. I wish I could wear it instead.

All said and done (and we are SO sad it is done)- we're trying to get one. Assuming our insurance sees the medical need- which seems pretty apparent given the information I sent them- we're covered at 100%. I can't say for sure what role it has in our lives, in our family, but we know that we need to be able to see what is happening so that we can make some truly educated decisions on how to manage his needs- which are a whole other post in the works.

We are so thankful that this kind of technology is available, and so thankful to Dexcom for allowing us to see if it is right for us.

His take on things

2010-06-28T22:49:00.000-05:00

We went to Target today in a last minute grocery run for dinner and decided to swing by the toy department to check out stuff for Peyton's upcoming first birthday when we passed through the swimming aisle and saw this:

And I'm sure most boys his age would think it was cool. Most of them would probably want to swim with them, or play with the little guys, maybe throw that thing in the middle around, or turn it into a gun of some kind... not my kid.

My kid? Says "Hey look Mom! It's a Spiderman, and his pancreas, and another Spiderman!" That's what my kid sees.

Perhaps I should explain that my husband is in a line of work where we have occasionally had stress balls shaped like pancreases (pancreai?) around. Perhaps that one of them even hangs on our Christmas tree with Christmas 2004 written on it in Sharpie. Liam knows his diabetes affects his pancreas, and we may have demonstrated with our toy pancreas.

Maybe he's onto something.

You tell me.

We have carb issues.

2010-06-21T22:52:00.002-05:00

So we're at Liam's Tae Kwon Do class, and I go ahead and check his blood sugar, even though he just had snack an hour before, just to make sure we are somewhere in the realm of acceptable before I send him out to the mat for his class. 149. Which I think is a lovely number, considering his goal is set at 150 during the day right now. Lovely in most cases, but kind of nerve-wracking considering he just got his insulin an hour beforehand, which means he will plummet until the 2 hour mark. His basal has been reduced by 50% for 2 hours, starting about 30 minutes before his class- which in most cases does the trick for him, but I don't think it's going to work with so much insulin in his system. I decide to carb him up, trying to balance carefully between having him go low and making him take off into the 200's and ruin any chance of his being able to concentrate and participate in class. I decide to give him two of the big smarties. 5 carbs. I plan to watch him like a hawk. I watch him shove them in his mouth, and send him off to join his classmates.

Flash forward about 15 minutes. He's been running, doing jumping jacks, kicking, punching... you get the picture. As he finishes his turn kicking the instructor's paddles, he turns and runs to the back of the line, pressing his hand against the glass window in front of my face. There's a smartie in the palm of his hand. Half of the carbs I wasn't even sure was enough to keep him from going low, right there, staring back at me. I stand up in my chair and yell at the window to eat the smartie! Eat it now! (Complete, of course, with gesturing and angry faces and other parents looking at me like I'm crazy). He puts it in his mouth and starts chewing as he sits back down. My heart is in my throat.

His instructor notices (the chewing, not the heart in my throat), and calls him in front of the class to ask him what it is. Liam tells him "It's candy!" (Of course he did!) The instructor makes angry faces and sends Liam out of class to spit it out. The teacher who comes to walk him out of the room has no idea what I'm talking about as I start explaining about diabetes and glucose tablets and low blood sugar. He lets him finish it. Obviously, we need to make sure ALL of the staff knows about Liam's condition. Meeting planned. Check.

Bigger issue here? I have a carb hoarder on my hands! We've been struggling a bit with lows that don't seem to make much sense lately. So many that I have managed to make him sick of juice. This kid LOVES juice. And I have counted on that when he goes low. He can get one down in less than 30 seconds. But several days ago, he told me he doesn't like his low juice anymore.

We don't always use juice, but more often than not, we do. It's fast, effective, and portable. And around that same time, we started noticing that if we gave him skittles or smarties or other things besides juice, we'd find out 10 minutes later that he'd but a bunch in his pocket to save them for later. Not effective.

So what do we do? Do I take the one joy of being a type 1 diabetic away and make him eat glucose tablets instead? Stick with the juice he's already burned out on after 9 months?

Announcement

2010-06-14T19:04:00.000-05:00

I would like to petition whoever is in charge to take the word "die" out of diabetes so that we don't have to repeatedly reassure our son that it is not the same thing.

Who's in charge around here anyways?

A different kind of numbers.

2010-06-12T13:42:00.000-05:00

Number of times I have attempted to put a test strip into my new cell phone, which has the same color and type of silicone cover as Liam's PDM (aka Personal Diabetes Manager, remote control for our OmniPod: 250

Number of times I have attempted to make a phone call on Liam's PDM: 20

Number of times my 11 month old has said "poo poo" today: 2

Number of times my 11 month old has said "Mama," EVER: 0

Welcome to my life.

Scissors required

2010-06-04T20:22:00.000-05:00

Did you guys know that you need SCISSORS to open these babies?

I had NO clue. Even though I have carried one or two around with me religiously for the last 8 months. And have also previously used them to decorate baked goods... (but who does THAT kind of crazy nonsense with cake gel?) I was giving our neighbor the rundown before we left to go out for dinner for the first time, and when I picked it up to show her, it just hit me.

I unscrewed the lid and stared at the sealed tip. Sealed. I tried to bite it, to see if I could have gotten it open if I had needed it. No luck. Wow.

Also, I wanted to add that summer is just about here, and after our first ever post-diabetes swimming attempt, I learned two things:

1) Swimming makes Liam low, but only after I've checked several times and found him in a completely normal range.

2) After making a switch to the "physical" kind of sunblock, I can attest that the zinc stuff gives Liam exactly that pale, waxy look he gets when he actually is low. So I continued to stop him and check him- even after we had been home for hours- thinking he was low. This went on all day, because I repeatedly forgot why he looked pale until the meter was showing a decidedly un-low number. (Guess I was a bit too aggressive with the basal reductions at the pool?)

Happy Summer!

Today

2010-05-25T22:17:00.000-05:00

I should have known it would be one of these kind of days when he woke up high. I played things a bit too cautious with his correction since he was heading off to preschool, and by snack time my phone was ringing because he was the kind of high where the meter uses words instead of numbers.
He was laying down in the office when I got there, and was looking like he was really feeling every bit as high as the meter said. He broke down when I told him we'd have to skip snack today, since it would just make him feel more yucky right now. He cried the kind of cry that I hate to hear. Not the four year old, whiny, I-didn't-get-my-way cry, but the it's-just-not-fair, defeated cry that breaks my heart.

I wanted to grab him right then and run away with him. Take him home for some kind of snack he could have- cheese, meat, sugar free jello... I knew I had a bag of almonds he could eat in his bag, but school is a nut-free zone, and they aren't allowed to keep any of those perishable, carb-free snacks in their kitchen due to licensing, so it was off to class he went for his last week with his friends.

He stayed high for most of the afternoon, and with that kind of quiet often comes his most disarming inquisitiveness. We were driving home when we passed a drop in child care place we had used once or twice when we moved into town. Not long ago, he had mentioned how fun it was there, and asked if he could go back. I told him that he was a super special boy and now he needs super special people to take care of him so they can help with his diabetes. He seemed satisfied with that at the time, but today, as we drove by, in the most wistful, tiny voice he said "Mom, I hope that someday there is a cure and I can go there again."

I hope so too, buddy.

The dog ate my diabetes blog week

2010-05-24T23:44:00.000-05:00

I meant to do it. I sat down on day 1 and was having such an awful day that I just couldn't admit to myself or the world that between Liam's night time checks and my teething baby I sleep an average of less than five hours a night- on a GOOD night, never even close to uninterrupted.

I read and read and read all everyone else had to say. I took notes. I laughed. I cried. I nodded my head in total understanding. I mentally drafted blog posts while doing dishes, grocery shopping, and changing diapers, but every time I had a moment to stop and write it... it was just too much.

It's nothing huge, necessarily. Liam has been acting out and we didn't know if it was because he was a four year old boy, or a slightly sleep deprived four year old boy, or a diabetic four year old boy... you get the picture. We've always taken the attitude that wonky blood sugar or not, he still has to act in an acceptable way. And wonky blood sugar it has been. He had strep throat, which announced itself when he threw up all over the place, which then lent itself to a vicious cycle of starvation ketones that wouldn't go away because he wouldn't eat because his throat hurt. Then he was on antibiotics for 10 days- more wonky blood sugar. And now he suddenly needs half the insulin he did before for corrections, so we've been battling daily lows with no discernible rhyme or reason.

Things are going a little more smoothly now. It took us taking a hard look at things and realizing that while he was getting a lot of attention- a lot of it was related to diabetes, and managing it. Things aren't perfect, but we're getting there.

On top of that, Peyton is now 11 months old and is cutting her fourth top tooth. We've had a non-stop teething extravaganza over here in the last couple of months, and this tooth seems to be the worst one yet. There is not much sleep happening, which tends to make other things get a little out of focus.

There is other stuff too, but I can't remember what it is right now, and I'm going to call that for the blessing it is and go to sleep before I remember.

Good night.

Waiting for my phone to ring.

2010-05-04T10:13:00.002-05:00

I had my camera charged up and ready to go so I could take some pictures of Liam with his "robot arm" also known as his pod- but that just isn't as fun. I came home from a quick errand, and my awesome husband took these pictures with his cell phone.

Me and my cell phone are jealous. Not only of his cool new calendar and alarm clock systems, but this camera? Come on! My phone makes tiny pictures with a giant date stamp in the corner. He'd say it's because he's a better photographer, but I still disagree. It's because he has a better cell phone. Hint, hint eh-hem **mother's day and birthday this month** cough cough.

So the reason I'm here at home on a school day at 10:05, and not there at his preschool with the baby ruining her nap for the morning? Today is the day the school takes over his morning blood sugar check and snack bolus. More on that later.

Things I'm thankful for tonight

2010-04-28T00:51:00.002-05:00

Today I went in to Liam's preschool to supervise the front office staff do his pre-snack blood sugar check and snack bolus, and as I watched my wriggly goofball of a son, fresh off the playground from recess and FULL of energy bouncing in his chair and trying to do a headstand on the floor, completely oblivious to the bolus she was getting ready to deliver, the school director started to look a little flustered as she tried to get the PDM next to his pod to deliver the bolus. "It's okay," I heard myself say. "That's actually one of the great things about the OmniPod. You can do it from where you are standing. Just imagine trying to get a shot near him when he was on injections." She relaxed, and the bolus delivered, but it really got me thinking.
Even on our worse days, things are so much more manageable now. Diabetes isn't ever simple, but it's gotten a lot easier to deal with over the last few months. So, in no particular order, a list of things that I am loving right now.

1. D-Moms and the online community
Until a couple of months ago, I was barely aware that a diabetes community existed. I'd joined a couple of forum type websites initially that ended up being pretty inactive, and found one or two... okay, just one other mom of a type 1 diabetic, and proceeded to email her novel length rants full of questions and frustration and very little coherence (Sorry Lorraine!)

While I still really like to bug her, I had the good fortune of running across Joanne who realized I was very close to her and sent a whole bunch of other d-moms my way. She also mentioned Laura, who lived even closer to me and had a son who was diagnosed within days of Liam at the same hospital, and incidentally, had just been booked into a pump training class with me. Real live d-moms, in the flesh! How awesome!
I really didn't realize how much support was out here. And you all have been so incredibly awesome. (And cheaper than therapy! Ha ha!) The first time I got online to chat with other d-moms, I laughed harder than I had in months. The whole next day, I felt lighter. And it kept lasting; the isolation I'd been living with began to lift.
I think the simplest way to explain this was something I saw Joanne's sweet little Elise do the first time we met. We were sitting down to eat lunch (at Laura's house, no less- MAN I love those playdates!) and while I was checking Liam's blood sugar, Elise reached her tiny finger out and touched Liam's Multi-Clix lancet and said "same." She recognized that he had the same one as her. That just got me all choked up. That was the point. For the kids to see that they were the same. (Well, and us...) I want to put my finger on all of you awesome d-moms and say "same." You get it. Simple as that. It means so much to me to have you all in my life. I am so grateful to have met all of the other people living a life like ours, as much as I wish none of us had to live it.

2. The OmniPod
Insulin pumps! The greatest thing since insulin! Even when I'm trying to figure out which basal rate to put where, and I'm rambling like a crazy person, I'm SO grateful that we have the ability to tailor basal rates to his varying needs. I'm so grateful that Liam can stand on his head while we bolus him. That we don't have to give him shots anymore. That I don't have to watch him try to decide whether it's worth it to have an extra shot so he can have a glass of milk when he wants one.
I'm grateful that he can walk around, swim, ride roller coasters, turn his bath into a deep sea expedition, all without having to worry about disconnecting a pump. I love the PDM (Personal Diabetes Manager, for the uninitiated) and its big color screen. Its seriously simple prompts and menu. (So much so that I also need to buy stock in AAA batteries.) It's made Liam's life resemble that of any other kid so much more in the last two months, and if I had any goal for him other than his health and safety, it was that he still get to be a kid.

3. Healthy Balance Juice from Old Orchard

This may seem small after all that heavy stuff, but my kid really likes juice.
The big JDRF letters on the bottle caught my attention, then I saw that it was 6 carbs a cup. Not free, but also not straight sugar that will make Liam spike like crazy. It's sweetened with Splenda, and while I wouldn't let artificial sweeteners touch the kid before, I'd rather Splenda than aspartame if we're going there.
The very best part? This is a much better solution every once in a while than Crystal Light (0% juice), or even the Minute Maid Fruit Falls or Just 10 (5% juice) because this stuff is 20% juice. My local Kroger carries it, but you can check it out here .

Perfection

2010-04-25T15:14:00.001-05:00

It probably isn't a good thing when you walk into a room and people say "you look like you've had a crazy day" or "what happened?" or "did you sleep at ALL last night?"

Okay, so my hair... it's spirited. And my skin was always pretty pale, but the dark circles... those are new. I take great comfort in the fact that they aren't completely permanent. Thanks to an awesome husband and dumb luck, I got to go to bed early one night last week and got to take a nap two days in a row and when I woke up and saw myself in the mirror, I ran into my husband's office like it was Christmas morning to show him that they were gone. (Almost).

The truth is, they're back. Of course. It was fun while it lasted. We just don't sleep much around here. And how can we?

We've got basal rates that are too low, and basal rates that are too high, and insulin to carb ratios that are too high, and correction factors that are too high.

So we eat dinner and he goes high (not enough insulin in that ratio) and we correct him and he drops like crazy (too much correction) and we treat the low and he zooms back up high again(too many carbs?) but then he starts tanking (basal rate too high) and it's all just a bit complicated. What comes first? Chicken or egg?

It's like untying a knot. I just don't even know where to begin. I'm not supposed to change it all at once, but it's a mighty pain picking at one loop at a time trying to untangle all these details, just to have the loop I just thought I loosened tighten back up when I pull at the next one. (Sorry, I was probably a bit ambitious for my sleep deprived brain there- that was confusing.)

We see a trend over a few days. We agonize over it. We think we've got it. We sit back to watch, and see the problem we just thought we fixed come back. Only now it's worse. Or else that trend we were seeing has disappeared into thin air and we are looking at the same trends we had last week. Time to start over.

It reminds me of that awful game where you have to match all those tiny little shapes into the corresponding holes while the timer is buzzing away counting down as you race the clock, and you almost have them all in where they belong when BAM, the timer dings and the pieces all launch out every which way. I hated that game. What was that called? (Google consult: Perfection.)

Ahhhh ha ha! Irony! That's why it got under my skin, isn't it? Because some of us just can't let go. Some of us have this issue with obsessing over getting it just right, and CANNOT STOP until we do. I should go look for my therapist's card, huh? I needed that laugh. Okay.

...

Is it even possible to be getting more sensitive to insulin corrections, but less sensitive to insulin at meals? Can that even happen?

Disney World

2010-04-22T09:52:00.001-05:00

There are moments in a life with diabetes where it becomes achingly apparent just how different things are for our family. My son may get dropped off at the same school as your kid, but I'm betting you aren't being asked to sign a waiver saying that they aren't responsible for keeping your kid safe. My son may stand up with yours and receive a soccer trophy with your kid, but undoubtedly, he will not get to sit down and eat pizza with the rest of his team afterwards, because he is low from running around with them before the ceremony. And when your kid finishes eating pizza and goes to play with his teammates, my son won't be able to do that either, because now, he needs that pizza.
These moments come and go. They are not the focus of our lives- they can't be. And after almost 7 months of them, they do not paralyze me with dread and anger and sadness quite as much as they used to. I expect them, to some degree. And I focus on the moments in between them, where he does get to be just like everyone else.
But there was just something about watching my four year old little boy laying back, glassy-eyed in his stroller as a parade of his favorite characters went by at Disney World, not even cracking a smile that crushed me. It wasn't that he didn't enjoy any of it, but as we watched his numbers barrel upward from an unfortunate 250 to an unwelcome 350 to just plain HIGH, it was clear that while he was present in there somewhere, it was diabetes looking back at me. I hated it. I felt cheated. Angry for him.
One clean first aid station, a pod change, and one amazingly supportive husband later, we were somewhat back in business, looking at a slip of paper inviting Liam back to participate in Jedi training on stage with his favorite characters in an hour. His blood sugar was dropping, almost back to an acceptable range and he had definitely perked up, but the ketones were questionable since we were dealing with urine test strips, lagging behind on the data by a couple hours. We knew this may be his only chance to do it, so went ahead and made the call to let him go up and show Darth Vader what he's made of, and it was well worth it. He's still talking about it.
The rest of our trip was better on numbers. Definitely high, but not with any predictability. Chalk that up to theme park food and a mom who was maybe just a little bit overprotective and maybe hardly let that kids feet touch the ground after a day of stubborn lows the day we flew in. Who knows. It wasn't perfect, and it may not have been the experience I'd hoped he'd have, but he took away a lot of great memories. Diabetes may have made itself known, but it didn't get away with everything.
Aside from the highs, it was great spending a week with the grandparents away from (some of) the stressors of everyday life. It was great having extra hands everywhere and not having to cook anything, but it became clear that diabetes does not take vacations. We didn't get many breaks, and neither did Liam. There was a lot of unfamiliar foods being weighed and dissected, a lot of restaurant server interrogations, a plethora of blood sugar checking. We were downright EXHAUSTED when we got home. And it was clear that big bad diabetes found a Disney vacation no more sacred than a day of lounging around the house watching cartoons. Highs, lows, ketones, meltdowns from crashing numbers, meltdowns from skyrocketing numbers, (and maybe one or two meltdowns from being a four year old boy at Disney World thrown in there)...
It was hard. It was maybe one of the hardest times I've been through since his diagnosis. It was hard watching him have diabetes at Disney World. It was hard realizing how much work it all is, even when we are on vacation. It was hard coming back home with the excitement of this trip behind us to see no end to the days exactly like those days stretched in front of us. We need a cure.

We need a cure.

Sweet baby girl

2010-04-08T21:08:00.001-05:00

My sweet baby girl was born into a storm of crazy, with three different family members battling cancer across the country. We had just moved away for a job opportunity that we couldn't afford to miss, and were living in an unfamiliar place. Being away from family at all was hard, let alone in a time like this. One of these people, my husband's mom- who is seriously the most awesome person I've ever had the pleasure of knowing- passed away two short days before Peyton was born.
While the other family members had happier news as they fought their battles, the loss of my husband's mom and the distance between our families and our new home took a toll on us. It was a bittersweet time to begin with, and we were sad even in the beginning that there was such a shadow over this new joy in our lives. We couldn't help but compare the joy of Liam's birth, surrounded by our friends and family, to the birth of Peyton, where our visitors were few and far between. It seemed unfair.
When Liam was diagnosed, she was just over 2 months old. Those first two days in the hospital I had to leave her with a neighbor who we were very blessed to have met. As lucky as we were that we had support, I couldn't believe that I was leaving my 2 month old overnight. The first night I ever spent away from Liam was when I was in the hospital when I had Peyton. He was 3 1/2.
During those unimaginably tough first days, I left her, again and again, returning to deliver pumped breast milk and feed her. We were lucky enough to have my mom come stay with at the hotel near the hospital with us so that Liam would never have to be alone. But it didn't change that I was leaving her.
And as hard as I tried to keep up my milk supply, the stress of being in the hospital and forgetting to eat for a few days, in addition to the pumping sessions that were taking a backseat to sessions dedicated to teaching us about giving injections and counting carbs- it took it's toll on my supply, and for weeks as I battled that, I began to feel a growing sense of guilt at number of ways I felt I was failing her.
In those early days, on our rigid meal schedules and carb counts and precisely timed injections, with all the behavior issues we were having with Liam as he adjusted, I had to choose him. She was crying and hungry, and this ugly disease would need to be feed right then too, and I had to leave her to cry, again and again as I fell slave to the food scale and syringes, the screaming tantrums. Again and again, I had to deprive her of her simplest needs.
The guilt I feel, even now, crushes me at times. While I've been attempting to slay this dragon attacking my son, she has grown up. All too quickly, she's becoming less and less of a baby. I blinked, and she is 9 months old. I feel like I didn't enjoy it like I should have. Don't get me wrong, I've loved her every single second of it. We've laughed. We've played. I just feel like I was robbed. I blinked, and my two month old, refusing to be swaddled, is now 9 months old and crawling everywhere, pulling up on furniture, calling for Dada. She eats with such gusto I can't believe she's related to Liam. She's her own little person, who is determined and curious and dramatic, and just plain wonderful.
She's already lost so much to this disease. And what brings me here tonight (yeah, that? Above? That was just my intro...) is my fear that this disease may try to take more of her someday. That someday, we'll see symptoms in her that we are all too familiar with.
I can't help it. I'm just obsessive by nature. As rational as I've tried to be, it sneaks up on me. I have refused to test her blood sugar. She hasn't been exhibiting symptoms, and it just seems wrong to put her through anything unless we have some reason to suspect we need to. Diabetes has rocked motherhood for me. Everything I thought I knew was normal, or not, I'm unsure of now. I realize that while Liam may not have been born with diabetes, I don't know when exactly it decided to rear its ugly head. I've never parented a non-D child, in a sense.
I mentioned that Peyton likes to eat. And what I mean is, she inhales food. Not baby food. She hasn't wanted any of that since she was about 7 months old. She has been going to town on table food since then with her two tiny teeth, with or without my permission. Thai food, Mexican food, you name it. We let her taste foods we expect she wouldn't like, like lemon, or pickles, and she's begging for more. She eats more than Liam most of the time. She shoves food into her mouth so enthusiastically, it ends up going up her nose. She cries for more. And it's kind of cute. Until I wonder whether this hunger is related to something else. The sane part of me tells me that she's just a gifted eater. She comes from my husband's family's stock. I mean, they take food like pies, that are already loaded with butter and fat, and then they FRY them. Serious eaters, folks. That sane part of me tells me that she loves her sippy cup because she's teething. The other part will only put an inch or so of water in it when I hand it to her, afraid for her to be thirsty. I want her to refuse it. When she wants that cup at all, I tense up.
She doesn't seem to have any other symptoms of diabetes. She's gaining weight, she's not soaking diapers. She's really not even drinking all that much.
Tonight, for one second, I let my concern hit me before I tried to rationalize it all away. Before I started to refuse to test her, I let myself wonder if I was being even more stupid for being so stubborn about it. It only took that second to plant that seed in my mind, and I knew I was going to test her. Something about the way she ate tonight just scared me a little more than it made me laugh. I held her in my lap, and adjusted Liam's spare lancet to it's most gentle setting, and used it on her tiny finger. She didn't cry. Neither did Liam, the first time. It took the second and third time before he started to realize what was coming and fight me.
Longest 5 seconds of my life.
95.
Whew.

Done.

2010-04-06T19:44:00.001-05:00

doctor's appointment. logs. screaming baby. preschooler touching everything. CDE frustrated. husband leaving to catch flight. whining baby. changing numbers. teething biscuits everywhere. in her hair, her nose, her ears. still no tooth. whining boy. 384. windy parking lot. tripping on hem of pants. drop keys under the car. not listening. tegaderm, where is the tegaderm? no toy? tantrum. screaming. crying. sobbing. paying. leaving. hysterical. dinner. no grocery store. too late. pizza. 40 minutes later, bolus. watching out window. no pizza. baby. walk away from baby. wailing. phone. not in delivery range now. great. dinner? yogurt, granola bar, easter candy. bed. now.

pizza. easter candy. fetal position. cry.

Edited to add: attempting to wipe his own bottom and clogging the toilet. noteworthy.

One month

2010-03-30T10:22:00.000-05:00

It's been one month since we started pumping. And we're doing really well. Liam's numbers (with the exception of the last two days, thankyouverymuch SORE THROAT, have been great. Better than we've ever seen. His A1c dropped 0.5 in the first week alone. His body may not know what to do with such great numbers yet, since he's used to hanging out much higher, but we're getting there. Maybe we can take all the rebellion and stubbornness we are seeing as signs of a body that finally feels good enough to argue about it.

He loves that OmniPod. Each time pod change day rolls around, and he starts to worm his way out of it, we lay out the 12 shots it is replacing on one side, and the new pod on the other side, and ask him to choose. It isn't a tough choice.

As much as he may whine squirm while I'm trying to get the thing on him, when it starts it's click, click, click... CLICK, he goes quiet, and then triumphantly exclaims "I didn't even CRY!" regardless of whether he did or not. We agree, and cheer him on. Because he's only fussing about it in anticipation. Once that last click is over, the crying stops. It's just not that bad.

Then there are the times where he seems disappointed in himself, and says "I wasn't brave this time" and we hug him and remind him (and maybe ourselves?) that being brave doesn't mean you aren't scared, it means that even though you ARE scared, you give it your best try. Those days I hug him even tighter.

That boy is brave.

And now, a return to your regularly scheduled programming of frustration and despair...

2010-03-23T14:02:00.000-05:00

Confession.

I'm cutting corners. Certainly not with Liam's diabetic care, but just about everywhere else, it feels like. As positive as I can be about diabetes, and even at the best of times, it takes a lot of time. Poking fingers, fumbling with test strips, counting carbs, obsessing over numbers, keeping logs, worrying, waiting... all of it. You know what I mean. It's a full time job. And my life was pretty busy before diabetes.

And as optimistic as I can be- it doesn't make more time in the day. And that is exactly what I need.

As it was before, sometimes laundry didn't get folded right away. Dishes sat in the sink sometimes. And sometimes, on the counter next to the sink when it ran out of room. Oops.

Now? Oh man. If I vacuum, it's to keep my newly mobile baby from devouring every abandoned test strip or juice box straw wrapper, or teething on wrapped alcohol swabs she finds. (Not making that up. Um, hi, poison control? It's me again...) It's the little things that pile up. And I just can't seem to find the time. And when I do, I'm taking time from something else that I probably shouldn't: sleeping, showering, eating, brushing my hair... I just can't make it all fit. And I'm a perfectionist, so I can't let it go either. If it sits there, it eats at me.

Just one example:

Every day, Liam wants a PB& J sandwich. Late last spring, we made enough freezer jam for 5 years. Most of it is still sitting in our freezer, since that jam is a relic of our old, carefree days of no weighing food, recipe-shunning madness. I haven't a clue how many carbs are in it. I will always remember the day we made it. And I hope that this year, maybe I'll be brave enough to attempt to make some more of our own.

In the meantime, we've been buying jam at the store. A LOT of jam. Our jam jars tell the story of his diabetes better than we do. We've got the sugar free, from the days of strict carb counts in the beginning. Several jars, each one with fewer carbs than the last, as we desperately attempted to keep his favorite food a part of his diet along with other stuff. A boy cannot live on PB & J alone. Then the free for all jam when we were allowed to use carb ratios. I'm talkin' full-sugar, make-that-blood-sugar-shoot-straight-up, just-because-we-can-jam. A bit of rebellion at the new freedom. And now finally, we are kind of close to where we started, at lower sugar jam, just like he ate before. Of course now I live hundreds of miles from a Trader Joe's and I can't buy our old jam. So as thrilled as I was to find the Smucker's low sugar stuff, the strawberry kind is full of dye- red 40. Yuck. The grape, however, is not.

And so everyday, he eats his sandwich. In the kind of way a 4 year old boy does- with both hands, somehow smearing it all over his face, and purple jam plopping into his lap. Onto his clothes. Which go into my laundry pile. That is most of the time about as tall as I am. I just can't stay on top of it.

Every day: lunch time, a new outfit. Half a bottle of spray n' wash. Another load of laundry. Dirty clothes pile getting taller. Clean clothes pile getting smaller.

So sometimes, he doesn't have clean pants. Sometimes, I pull a pair out of the hamper, shake 'em out and...

cut corners.

Good day

2010-03-22T21:21:00.000-05:00

I've come here and started typing a good six or so times in the last couple weeks, but I catch myself at about paragraph three of my sob story and I have to stop myself. Because while my life is intermittently (and sometimes more often than not) filled with CRAP, it's also filled with a lot of good things. Great things, even in the face of diabetes.

It might be that when I'm sulking about how badly I think I've messed up or how out of control I feel, diabetes is right there in the forefront of my mind, and so the thoughts I'm obsessing over in my head tumble out easily into this blog. But when it's good? I'm not here. We're playing Legos. We're cooking together. Or making messes out of glue and construction paper. When it's good (and that is happening more all of the time these days), diabetes is just a little smaller than it was the day before.

So instead of saying some of the other things on my mind right now, I'm going to say that I watched Liam ride his bike at the park with some other little boys today, and attempt to play basketball. I watched him smile, and laugh, and fit right in. I might have checked his blood sugar four times while we were there, but he had a great day.

And it's those moments that I want to focus on; that I want HIM to learn to focus on.

Sitting out

2010-03-10T15:33:00.001-06:00

Days like today, I look at the 302 staring back at me from his meter, and I look at the clock showing 2 hours left until his soccer practice, and I feel a battle. The race is on. Can I turn him back into a normal kid before the clock is up? Or will he still be a kid with a Problem.
Even if I get him a bit lower, is he going to be so distracted that he doesn't listen? Will he decide to wander off because he's feeling that certain kind of ornery he feels when he's running high? Are the other parents staring at me, wondering why he is even there? Will I over-correct and then feed him raisins or juice on the sidelines while he watches his team? At what point should we just leave? When he gets to play another 10 minutes? 5?
When he walked off the soccer field during his game last weekend, complaining of a headache, and the meter reading HIGH! (and by the way- the exclamation point? Totally unnecessary, thanks) I wondered why we were even there. When one of the other parents looked at him sitting on the sidelines and thought he must be watching a sibling play- because he's on the sidelines THAT MUCH- it makes me feel like it's a charade. He's not really even on the team. This weekend, we left. We took the snacks it was our turn to bring- probably the only ones all season he COULD have eaten, since we're on a fixed carb schedule right now, gave them to another parent to pass out, and we left.
We didn't even go home, we just knew we didn't belong there.
I just don't know. I know we're getting closer, and I know it isn't always like this, but right now, it sucks. I don't want my son to have to sit on the sidelines of his own life.
It just isn't fair.

Pumping

2010-03-02T20:25:00.000-06:00

So yesterday was Day One. It was bumpy. Liam had been sick, and his insulin needs were higher than normal. So we battled highs in the 300-400's that would only dip 30 points or so after corrections before rising even higher. And yet still, it felt like it was the right thing to do. I couldn't stop smiling. (Well, maybe a few times).

Night time was particularly tough. I was up every hour to check him after making corrections I just didn't know what to expect from. After I checked him, I'd have to stare for a minute at the number trying to make sense of it. I think I actually fell asleep for a few minutes sitting up, because when I filled out my log this morning, the blood sugar check and the subsequent adjustment were about 30 minutes apart. I know I didn't sit there for 30 minutes looking at that PDM. Hmmm...

This is what last night looked like for me:

And this is what it looked like for Liam:

And that is exactly why I already love this pump. He slept through it all. No extra shots waking him up. That is what this was all about. Making this a little bit less for him to deal with.

Waiver.

2010-02-27T07:53:00.000-06:00

With our pump start coming up Monday morning, I was taking the opportunity yesterday to tie up some loose ends before we got the ball rolling. I gave his preschool a call to finalize the details of his care while he is there two days a week (for a measly two and a half hours, but nonetheless...), to find out what paperwork and training they want before taking responsibility for his snack bolus, etc.

Liam is the first diabetic they have had at their preschool, and while I was nervous about how things would go since they are a private school and a 504 is out of the question for now, they really stepped up. During our parent teacher conference a couple months ago, I spoke with the director about our plans to start Liam on an insulin pump, and she was wonderful- volunteering to have herself and another office person trained to test his blood sugar and give him his insulin at snack time so I didn't have to drive there every day. Not a big deal right now with two days a week, but certainly an inconvenience for pre-K next year which is five days a week.

So we're discussing rubber gloves, and blood procedures, and medication forms, and doctor notes, and she mentions a waiver. Nothing I didn't expect. I say "of course, not a problem," prepared to jump through yet another hoop, when she continues, "so that we're not liable if we get a bad reading or something like that, and that we aren't trained medical professionals..." Right.

And then it hits me. Oh my God. What if they get a bad reading? What if he's got something on his hands and it pops up really high and his pump wants to correct and he's not high and... Oh my God. They aren't trained medical professionals. What if they forget and bolus him for the number of calories or something instead of carbs? Initiate panic sequence.

And for a second, before my logical brain starts composing the school's (very detailed) instructions, I'm in a spiral of what-ifs, and I about lose it. Forget preschool, what about kindergarten? A whole day away from me? For a second I plan to follow him around forever.

And then the other half of my brain kicks in and starts planning preset boluses and fixed carb counts for snacks at school and no corrections at school ever, unless I come do them myself. I breathe again. But I'm still scared. I still realize what they are asking me to sign.

And I'm curious. How do you do it? What does your kid's school do?

Just a number

2010-02-25T21:09:00.000-06:00

So today was our pump training class, and Liam starts on the Omnipod on Monday. We've had the kind of week (month, really) where I keep getting these randomly high blood sugars in the 300-400 range. He's had moderate to large ketones twice in the last several weeks, and frankly, I was all ready to get even more aggressive with this and get him on the pump so I can attempt to beat the heck out of this diabetes crap.

What I didn't know was that when we came in, they were going to get his measurements and A1C. I think from the moment I heard that was coming I was even more tense than when I had to do a pod insertion on myself. (Which was absolutely no big deal at all). At the end of the class, I asked if we had the number, and I should have known from the look on her face and the fact she asked if I wanted to come across the room to talk to her that it wasn't going to be good.

It wasn't good. It was pretty devastating, actually. Can I say what it was on here? I don't think I've actually heard anyone actually say what theirs is... is it like telling your age? I'm just going to say it. It was 9.9.

I know that it can be much, much worse. But when he was diagnosed, he was at 7.4. The doctors all said we had caught it early. He was up a small amount at his first appointment a month later, but not anywhere near this. I had really worked myself up to expect it to be higher. I know what his average blood sugar says on his meter. And I also know that we don't catch all of his highs. (Obviously, or the number in my head would have been closer). It just hurt to hear how much higher it's gone while he's being treated.

All those blood sugar checks. Every 2 hours. Midnight, 4 am. Every day. At the minimum. The hours I've spent agonizing over his logs, trying to make some sense of this- ANYTHING to find a discernible pattern that could warrant a change in his doses. All the sleep we've lost, and everything we've put this little, precious boy through, and it's getting worse.

It's been five months, and it's getting worse. What more do I have to give this?

I know it's not necessarily something we are doing wrong, but this is my little boy's body we are waging war over. His silly, sweet, precocious, wise for his years little body.

And we will win, diabetes.

Gatorade: Liam's story

2010-02-17T23:44:00.000-06:00

I picked Liam up from preschool yesterday and he seemed to be in one of his way-too-introspective-for-a-3-year-old moods. He was excited at first as I opened his backpack. Several Valentines fell out, and he got quiet. He didn't say much for a few minutes, then thoughtfully began to speak: "Mom, I wish I never drinked any of that Gatorade. I don't think we should drink any more. I think it gives us diabetes."

Crap. That's what I thought. Nothing profound or eloquent, just "crap." He remembers. Of course he remembers. I know it wasn't all that long ago, but his three year old attempts to understand this new part of his life- it just makes me sad. He understands what is wrong with his body. He tells anyone who will listen. But the thing he keeps asking is why? Why him? And I don't know.

The gatorade. It's all part of that day.

My husband travels for work, and this week in September, he was in Charlotte for a company-wide meeting. Those weeks are tough on him, and tough on us. He is going from early in the morning until late at night with few breaks to call. I was at home with Liam, and my 2 month old daughter. We'd recently moved to Texas, and were friendly with a few neighbors, but don't have any family here to help.

He'd been gone for one day already. The day before had been a bit uneventful. I had noticed that the scale was showing Liam was a couple less pounds than I thought he was the last time we had checked, but didn't think much of it. I had called his pediatrician to schedule his flu shot, and mentioned it briefly. She figured it was nothing, and said we could check it out at his appointment the next day. We had a busy day, and ran some errands at the mall. I remember that we stopped for dinner at the food court, and I let him have ice cream when he was done. We don't do that kind of thing often, and I remember thinking while we were there that we should do it more.

I got home and put him to bed, and it wasn't long before he was awake again and crying that he couldn't close his eyes. I figured he was having bad dreams, and after fitful sleeping off and on for a few hours, I carried him down to our room and let him sleep with me. He got very little sleep that night, but really wanted to go to preschool. I made sure to let the teachers know that he'd had a bad night and was very emotional, and let him go. When I picked him up that day, he took a nap. He doesn't nap normally, but I figured he was tired from the night before. When he woke up, he looked awful. I fired off text messages to my husband, one after another.

"Was he always this thin?"

"He looks different. His eyes?"

I called over our next door neighbor as he got out of bed. I told her he looked different. Wrong. I was second guessing myself. I knew he was tired, but it seemed like more than that. We stared at him. We watched him sit, and drink the glass of orange juice I gave him to perk him up. We just couldn't tell if it was more than a bad night's sleep. When he finished the glass of orange juice, he asked my neighbor to get him another glass, probably knowing I wouldn't have allowed him more juice. He only was allowed one cup a day. For some reason, I let her. She poured him another glass, and he drank it. He asked for more. I told him no juice, but he could have water.

I watched as he filled his sippy cup up repeatedly. I counted. Three, four, five, six, seven times. I called the doctor back and left a message. It was 4:00. I called my husband. He suggested the gatorade. For electrolytes. We were concerned he was dehydrated. His eyes looked sunken in. Eight, nine. The nurse called back. I explained about the drinking. How bad he looked. She never said diabetes. She said we should test his urine. I was worried about his kidneys. I knew some of the symptoms, but it hadn't clicked. She said I could take him to urgent care tonight, or just wait it out till his appointment in the morning. I agonized. It was the height of the swine flu season. I didn't want to expose him to worse if it was just some virus, or fatigue. I decided to take him in. This was the photo I brought with me so they could understand that something looked wrong.

My neighbor agreed to stay and watch my baby, who was just over two months old. I remembered that there was a kid's acute care clinic next to a restaurant we have been to several times that was decorated with an outer space theme, and I knew Liam would love it. I took him there with his sippy cup and we waited. They told me there was sugar in his urine. I had no idea what that meant. They said we should check his blood sugar. I watched as they explained to him that they were going to give him an "ant bite." The meter said Hi. I had no idea what that meant. They had to get out the manual to tell me it meant he was at least over 600. I sat there for a second, numb. I asked what that meant.

"It's probably diabetes." She mentioned it could possibly be something else, but probably not. I remember him watching the TV in the room over my head, while I turned away from him and began to cry. I tried to call my husband. No answer. I remembered that he was in an awards ceremony that night, and had mentioned I wouldn't be able to get through to him until after. I called again anyway. I thought about calling the neighbor at home with my baby. I didn't know who to call, really. And I didn't really know what to say.

At some point the doctor came back in and told me that they weren't equipped to deal with this. They called ahead to the nearby Children's Hospital and told them we were coming. They said I could take him home to pack, but I needed to go tonight.

We checked out, and as I paid my co-pay, the receptionist offered Liam a lollipop. Nice. I told her it probably wasn't a good idea, and I left. I got my son into his carseat before I fell apart. I remember leaning against the rear bumper of my car, sobbing, watching people come in and out of the restaurant next door. I wished they weren't there. I wished I wasn't there. And then I stopped crying. I got in my car, and I drove home. I called my husband. A thousand times. Still no answer. I got a call from the acute care clinic telling me that I actually had to drive further into the bigger Children's Hospital, and by the way, no siblings were allowed in the hospital due to the swine flu crisis.

I had a two month old, exclusively breastfed baby. My husband was hours away. We had just moved across the country from our entire family, and I was alone. My neighbor offered to keep my baby for me. I love that woman. She did my dishes, and held my baby, and kept me sane. So I packed up my breast pump, my son's pajamas, some story books for him, and started to load them all into the car.

I remember dashing all over my house grabbing things. Trying to call my husband every couple minutes. He finally got a chance to call, and I had to tell him. I remember standing next to my car in our driveway, looking back at the field behind our house while I tried to explain, crying. He was going to try to get home. When I got off the phone, my neighbor's husband suggested that he drive us. He helped me move our stuff into his car. I fed my baby, and then we left.

I watched the lights of the city as we drove into Dallas, realizing that I hadn't ever seen it at night until then. I listened to my son in the back seat begging to go to a restaurant instead. We got there after about an hour, and as we got out, I realized Liam had peed in his carseat.

...

I'm going to have to finish this later. This is hard.

No cake?

2010-02-14T10:25:00.001-06:00

"I don't want to eat any cake, Mom," he says, in a voice that sounds guarded, already assuming we weren't going to let him have any. It pains me. He's sitting on the floor of the gym, sweaty from playing games and climbing all over the inflatable obstacle courses at his little friend's birthday party. He sits down outside the door to the party room, and patiently obliges as I check his blood sugar again. Just as he patiently obliged as I caught him coming out of the bounce house each time, shoving broken off pieces of granola bar into his mouth, and as he patiently obliged as I pulled him out of the games, not once, but twice to check him because he looked just a little too pale, a little too "off." He'd been hovering around 90 or so, and between all the running around, it was making me just plain squirmy. And as good as he'd been about me pulling him aside, to hear him turn down cake, before it was even offered, before he even saw it, broke my heart.

We're at a point now where he's had to miss treats at special events just about as many times as he's been allowed to have one. We've been allowed to use ratios for the last couple of months, and while he may have to wait for a minute for the parent passing out the cake to apologize for not bringing him something different, and me to reassure them that it's okay, and convince them that he can have some, and then, in the most awkward and totally inefficient manner imaginable, try to scrutinize said piece of cake to determine how much frosting is on it and weigh it on the scale I brought (oh, the looks I get) to guess how many carbs it is- he does get to eat it. The other kids may be almost done with theirs, and I may have to sit down to make sure he finishes the cake- not just the frosting (again, with the looks), but he gets to eat it.

I don't know precisely what was going through his mind as he kept insisting that he didn't want any cake, but it wasn't that he wasn't hungry, or he didn't want some, because once we reassured him that he could have a piece, he ran in there and sat down next to the birthday boy and was laughing and eating like he didn't know any different. And it seemed that he really appreciated that he was tested outside the room, and at my husband's genius suggestion, got his shot *after* we got in the car a short 15 minutes later. It felt so good to see him be so normal, and perhaps, to feel so normal.

Maybe it's just inexperience on my part. I check him so many times, so many places during the day, that I don't stop to realize that even at 3, he does know how different he is, and that other people might be looking. He already has an awareness and wisdom beyond his sweet three years, and I hate that. I hate that he's at all cautious, and that he confesses when he sneaks a lick of a candy cane because he feels so guilty about it because he knows.

Maybe I should have gone into the party room ahead of time and had his cake weighed and waiting for him. It all makes me feel so clumsy and inexperienced. His own birthday is in three short weeks, and I better not mess it up.

Low.

2010-02-12T14:11:00.001-06:00

We can't usually tell what's going on with his blood sugar. He's not quite able to tell us when he's feeling high or low, not that we'd neccessarily believe him anyhow. This is the boy who not a month after diagnosis, would squint his eyes and roll around on the floor moaning "I think I'm low" in a feeble voice, then suggesting "maybe I need some juice." The same boy who would hold still while we fumbled with his meter and tried to get a reading, nervous that we weren't moving fast enough. We'd get a reading, usually well within range, if not above it. A stern "Liam" with a look and he'd raise an eyebrow, breaking into uncontrollable laughter. All for juice.

He'd have moments of acting really wild and crazy, and we'd be sure he was going high, only to test and find out that he was low. He'd be just laying there, and we'd be sure he was low, only to test and find out he was high. There were no sure signs, and none of the ridiculous looking cartoons on the sheet describing symptoms of hypo- and hyper-glycemia seemed to apply consistently. Or else all of them did. Truthfully, not much besides random (and very frequent) blood sugar checks would tell us there was a problem.

It finally took one scary day at a preschool class social for it to start making sense. We had met at McDonald's to let the kids eat and play, and as nervous as I was, I counted his carbs, checking and re-checking my Calorie King book and online lists in my phone before dosing him slightly less than I thought he needed, since he was going to be playing and climbing. He sat down and started to eat the french fries he had begged for, taking breaks for bites of salad when he took off after one of his friends from school. I hauled him back to our table and I heard myself shouting the most ridiculous thing: "I don't care about your salad, but you sit down and FINISH those fries, Mister."

About a half hour later, I watched him stop playing and lay down on the disgusting floor. I ran over in a panic and carried him back to our table to check.... 34. As I gave him a juice and held him in my lap I noticed that he looked pale. Specifically his lips, and the palms of his hands, which were almost white. I wish I had discovered that in some other, less awful way. A way that would require less therapy, perhaps.

Regardless, almost every time since, I've been able to count on that paleness to tip me off when nothing else does. Most of the time now, we can tell when he's going low. And if he's not low, well, we pretty much can assume he's high, but that's a story for another day.

So today, when we went outside to play in this crazy Texas snow with the neighborhood kids, he went out at 256, which I thought would be okay. I watched him like a hawk out there. And when we came inside, maybe 40 minutes later, I'd have sworn he was fine. After all, the telltale paleness was nowhere to be seen. But that rosy cheeked boy came inside and the meter said 54.

In this crazy game, there are no rules.

Take a look around

2010-02-10T11:20:00.001-06:00

It's been one of those days where I've heard myself silently begging "please let him have peed on the toilet seat, please, please..." as I try not to get mad that he didn't wait for me to get the ketone strips ready before he went. After all, he's only three. It's his pee. I should be thrilled that it's going in the toilet and not in his pants, right? He can't really understand that these ketones that have been hanging around all night and morning are just plain bad. We can make all the games we want out of trying to get him to pee on a strip, but it's still kind of weird. Not at all something that we would have done 5 months ago. I can't blame him.

It is weird. All of it. I've been so busy focusing on the details, the many important minutae of the day, that I haven't really taken a good look until lately. It's just now really starting to hit me, the gravity of it. The permanence. I don't mean to say that I haven't been aware how seriously or permanently this will affect our lives, his life. I have. There have been moments where it breaks through and I feel it. I grieve for the carefree quality his life used to have that may never come back. For the difficulty he will face. But I've been so focused on dealing with things one day at a time, trying to manhandle this diabetes into submission (you can laugh) that I haven't really lifted my head to see what the view looks like from here.

I took but a moment when he was diagnosed to cry, resting on the bumper of my car in the urgent care parking lot bearing the incredible weight of the news that this was probably diabetes. I refused to let him see me cry. I buckled him into his carseat and took my moment. And then I stopped. I put my head down and forged on. I dealt with the things I could deal with. I know that diabetes wasn't going to get easier. But I could make the logistics of it easier. I could make the meal plans easier. I could make the insurance coverage part easier. So I did that instead. I did the things that I thought would help.

It's just now that there are breaks in the haze of the details, and I've begun to see the rest of this new world. All of these other families living with diabetes, dealing with the same issues I deal with, with not much more to show than a little more control and a lot more experience. It's not that it's grim; it isn't. It's that it's still there. It is as big a part of their lives as it is ours.

I guess some part of me was hoping that this is so huge to us right now because it's new. That it eats up so much of our day because we don't have it down yet. And to a degree, that's true. I'm sure. We will figure out systems that work for us. I don't mean to make this sound negative. Every family I've read about or talked to seem to be thriving, in their own ways. They are living with this. Even we are living with this. This part to me is more about the battle between what I saw as "diabetes" and what I had seen as my life battling it out, struggling to coexist in my mind.