Sleeping Over with Diabetes

The dreaded sleepover; it can be a d-parent's biggest fear. Putting your trust in another parent, let alone one who doesn't know your child as well as you do, can be scary. Terrifying in fact. At the same time, Dylan having as normal a life as possible is critically important to me. I have always made it a rule to never let diabetes get in the way of his doing anything and this has forced me to relinquish a bit of control and trust him to take responsibility for his diabetes when I am not with him.

Sleepovers were one of the last things I allowed. For years, I would permit friends to sleep at our house, but the idea of Dylan staying somewhere else was simply not an option for me. Even his dad's house and grandparents' houses frightened me. Over time, however, as he has become more and more responsible with his own diabetes care, my trust in him has increased accordingly.

His first few sleepovers at friends' houses were with his best friend, who lives a block away from us, and whose parents are very familiar with diabetes and Dylan's care. They know to remind him to test frequently, they know how to treat his lows, and they recognize his low symptoms. And when they're not sure about something, they call or text me. In short, I am comfortable when Dylan is at their house.

Last Friday night, on the other hand, marked the first time I've allowed him to sleepover at the house of a friend whose parents (in this case a single mom) I don't know well. Dylan desperately wanted to stay there, and though every part of my being wanted to say no out of fear, I really had no rational reason for denying him this privilege, so we came up with a plan. Dyl was to text me every few hours with bg readings, especially before eating anything, and if anything was out of the ordinary, we would address it, and bring him home if necessary.

I dropped him off at 4:30pm, with a blood glucose level of 6.2 mmol/l. His pre-dinner text revealed that he was 5.1 mmol/l, and another text before bed showed he was 7.8 mmol/l/. At home, we would bolus for 7.8 mmol/l, if it was at any time other than before bed, as that's a tiny bit high for my liking. But we've always kept a marginally higher "acceptable" range for bg readings immediately before bed because Dylan has had nighttime hypoglycemic seizures in the past, though not in years. His nighttime bg levels have been very steady as of late, and he wakes up if his sugar nears 4.0 mmol/l, so I let him skip the middle of the night test for the sleepover. Yes, I really other parents would think I'm crazy for skipping a 2:00 am check, but with no variation in activity for the day, and bg readings steady for the previous few days, I felt confident that he would be fine. An early morning text showed a bg of 9.0 mmol/l, which he followed with a breakfast bolus for the french toast he was about to eat, and an insulin correction for the 9.0 mmol/l, all on his own. That's my guy; a true rock star when it comes to managing his diabetes.

So am I more comfy with sleepovers now? Not a chance. Yet baby steps are getting us there slowly but surely.

Sickie-wickie

Yup, Dylan's sick. The nasty flu bug that seems to be hitting everyone lately. Today is day 4.

It started Friday when we were at the endo appointment, though at that time it was only a stuffy nose and sore throat. By Saturday morning he was vomiting (only once thankfully), weak, achy, coughing, and had a fever ranging from 101 to 102. With no appetite, bg levels were the biggest concern, but they held steady for once! Sunday was more of the same all day. He managed to get up long enough to have a shower and change into clean pj's, but that was the extent of his activity.

Today I am hoping he is on the mend. Fever is down to 99, but nothing else has changed. Appetite still absent, weakness still present, and the cough is getting nastier and nastier.

I have been texting back and forth with the endo all weekend, updating her on his status. With his bg in range and no difficulty holding down fluids, however, there is really nothing she can do for him. We just have to wait this one out and hopefully he'll be back on his feet in the next couple of days.

Trends Don't Lie

Up and down, up and down. Just when I think I have pump rates set so that "in range" is a reasonable goal for the immediate future, diabetes goes and changes everything again. Call it Murphy's Law, call it karma, call it whatever you want, I call it living with diabetes. At it's best, it's manageable; at it's worst, it's a roller coaster, but it's always uncontrollable. And the more we try to control it, the more elusive that control becomes.

After some pretty decent bg readings for most of September, we have seen some consistent highs for the first half of October. And not "high" highs, which are so much easier to correct, in my opinion, with a nice, big, well-measured bolus. No, we've been dealing with what we call "low" highs in our house - those pesky high blood sugar levels that don't appear to be have an obvious cause. The ones that hover just a little above the "ideal" range; too low to continually correct, to high to ignore. The 11's were our battle for Thanksgiving. Not just one, not two, not even three, but a solid 48 hours of blood glucose readings ranging from 11.0 mmol/l (198 mg/dl) to 11.5 mmol/l (207 mg/dl). Furthermore, Dylan felt fine. He didn't feel high and wasn't showing any symptoms of hyperglycemia. It didn't seem to matter what he ate, or how many times we corrected the highs, the next reading was another 11. We changed infusion sets, tried a new vial of insulin, double checked against multiple meters and the result was still the same...11s. It became a bit of joke with Dyl after a while, as he'd test and then say to himself, while waiting for the number to appear on the meter screen, "anything but 11."

What does one do in that situation? Personally, I am always hesitant to adjust basal rates because so many things can cause a temporary increase in blood glucose levels. Maybe Dylan was under a bit of stress, or fighting the early stages of a virus. Perhaps he had a decreased amount of exercise for that 48 hour period. Or maybe it's the beginning of puberty - something I've been dreading, from a diabetes standpoint, for a while now. The point is, it's so hard to determine what causes a rise in bg, that basal adjustments are not always the best answer.

So I did what I usually do in this situation, after I've tried the obvious solutions (bolus, increased water, bout of exercise, infusion set change, new insulin, different meter) and haven't seen success - I look to the numbers to tell me. After all, numbers don't lie. And while a single number, or even a day's worth of data, can't always provide a clear picture, trends over time can reveal a lot. So I sat down at the computer, uploaded the last two weeks of pump data, and stared long and hard at the information, looking for trends, patterns, or anything that would shed light on the situation. Sure enough, I quickly discovered a number of problems. Twice during the day, for the past 2 weeks, Dylan's bg levels had been quite elevated (prior to the 2 days of 11's). It was always at the same time each day, and always a similar level of elevation. So I increased the basal rates for the few hours prior to those 2 times, in the hopes that it would help to curb the spike.

I then texted the endocrinologist to let her know that I had uploaded new data, and increased two of Dylan's six basal rates. I also asked if could she please let me know if any other changes were required. Yup, after almost 7 years of parenting a child with diabetes, I still ask the endo about every change to pump settings. And I probably always will.

A Few of My Favorite Things

August is "Advocating for Another" month and WEGO Health is running another of its great blog carnivals as an opportunity for bloggers who dedicate their time to caring and/or advocating for another to share their thoughts and ideas on the subject. With a preset list of topics in 4 different categories, hundreds of bloggers will contribute daily posts to the carnival between August 21st and 28th. 

Day 2's prompt is entitled, "These Are A Few of My Favorite Things." So here we go....my 5 favorite things about Dyl!

1. His sweetness. Dylan is the ultimate sweetheart. He is kind, generous, loyal, forgiving, affectionate, and always knows exactly what to say or do to make someone smile. He has a unique ability to see everyone and everything in a positive light. Since toddler-hood this has been one of his greatest qualities. He is a terrific friend, a loving son, and will make a very special husband one day.

2. His open mindedness. Be it food, an activity, a new book, or even a movie, Dylan is always open to trying new things. 

3. His sense of humor. Quirky and silly, Dylan is always cracking jokes and keeping us smiling. 

4. His courage. As mentioned in yesterday's post, he is unbelievably courageous. Never caring what others think, he is comfortable in his own skin and very sure of who he is. 

5. His ownership of his disease. He has taken ownership of his diabetes since day 1 and has never looked back. He learns everything he can about type diabetes, he talks to other type 1 kids and adults, he advocates for JDRF, and he does not hide his diabetes. EVER.

Advocating for Another Day 1 ~ Portrait Post

August is "Advocating for Another" month and WEGO Health is running another of its great blog carnivals as an opportunity for bloggers who dedicate their time to caring and/or advocating for another to share their thoughts and ideas on the subject. With a preset list of topics in 4 different categories, hundreds of bloggers will contribute daily posts to the carnival between August 21st and 28th. 

Day 1's topic is entitled Portrait Post, and asks bloggers to "write a descriptive portrait of your child/ren. Share qualities that make them, them – and include an image! (A photo or creative work of them!):"

As soon as I read the topic, I knew what I wanted to share. I have mentioned previously that Dylan has recently taken up vocal and instrumental performance and participates in a weekly performance class. Twice per year the kids have a live concert, in which they perform for their parents and peers. Two months ago, in June, Dylan performed a haunting cover of Coldplay's "Fix You" in front of a live audience of approximately 250 people. 

As a parent, I think I was more nervous for Dylan than he was. Unlike his ability to easily learn music for instrumental play (he plays the sax and the guitar), he's not a strong singer. And "Fix You" is not an easy song to sing. Most kids chose faster paced rock songs, or newer pop songs by idols like Taylor Swift. Not Dyl. He wanted to sing "Fix You" because he knows it's one of my favorite songs, and a song whose lyrics remind me of diabetes and my "inability" to fix my son's disease.

Courage is one of the qualities that I most admire in Dylan. He has an ability to do whatever he wants without any regard for what others think. And not in an arrogant manner. He is simple sure of himself. Self consciousness? He doesn't have it. Timidity? No, none of that either. Self doubt? No way. He is uber-comfortable in his own skin. I only WISH I had that level of confidence.

D-Camp is here

Ahh the joy of diabetes camp. It is the highlight of Dylan's summer and one of my favorite times of year. While I miss him terribly every year while he's at camp, I can honestly say that it's the only time I don't worry about his diabetes. He left yesterday for a week of outdoor fun, new friendships, and exciting adventures.

This is year four of diabetes camp and each year seems better and better. Dyl always comes back having learned so much, both from the staff and his fellow campers. One year he returned home excited to show me how he could do his infusion set change entirely his own. And last year he came home having mastered the dual wave bolus.

But it's so more than just that. It's the only place where diabetes is so common that it almost doesn't exist. It doesn't stand out, or set him apart from other kids, because everyone has diabetes. So when he needs to test his bg, no one cares, or even looks up. Why? Because they're all testing their bg too. Feeling low? Look to anyone, juice is never more than a stones throw away. It's like a special club with exclusive membership; a club where diabetes is the norm.

I also love d-camp because he is so well taken care of by staff. In fact, when we upload his pump data from camp week, it's usually better than when he's at home. I know he's safe there, and while that may not seem like much, to the parent of a child with diabetes, safety is one the most elusive things we know. We hope and pray for it, but we know that until a cure is found, safety is an illusion. We can never let our guard down. Knowing that Dylan is safe at camp is the most incredible feeling ever for this d-mama.

The only questions left is what do I do with myself all week?

Just Keep Swimming

Diabetes and exercise don't always mix well. While yes, exercise does wonders for the body and can provide significant help in managing blood sugar levels, the unpredictability when the two are mixed is enough to drive anyone crazy. 

Just this morning, Dylan started a week of intensive swimming lessons. 45 minutes of near non-stop lengths, practicing all strokes. The only breaks to the lengths are to tread water. I literally has no idea how his blood sugar was going to react but I (perhaps stupidly) tried to base my estimate of previous experience. Ya - anyone with type 1 diabetes or who cares for someone with type 1 knows very well that what works one day does NOT necessarily work the next. But you have to start somewhere, right?

A year and a half when we took Dylan to Mexico for 10 days, we balanced exercise (swimming) with insulin pretty well. Awesomely well, in fact. Turns out with Dyl at that time, that the glucose he was using, via energy he was exerting in the pool, almost perfectly balanced the increase in his blood sugar levels while being disconnected from his pump. Basically, this means he went pumpless for most of the day, every day, and the effects on his blood sugar were minimal. He'd wake up in the morning, test, bolus and eat breakfast, and remove his pump. He'd swim from 9:00 to about noon, test, put the pump back on to bolus for lunch, remove it again, and swim from 12:30 to 4:30 or so. Then he'd resume wearing his pump until the next morning. Seems crazy, yes, but it worked for him because he was so active in the water.

So fast forward 20 months, and add about 25 pounds in body weight. Pre-pool test revealed a bg of 8.1 mmol/l (145.8mg/dl). He wore his pump right up until the climbed into the pool. We didn't run any temp basal rates in the hour or two prior to the lessons, and he didn't have any extra carbs. Did I expect the same results as in Mexico? No. I expected a low, and I was worried because Dylan's telltale warning sign of a low is what he has termed "weak-knees," meaning that his legs feel like they're going to give out at the knees. Of course, in the water he wouldn't feel that because he wasn't standing. I stayed in the viewing area the whole time, armed with dex tabs in the off chance he started to feel low. 

Post-swimming test result? 12.9 mmol/l (232.2 mg/dl). Go figure...

2012 JDRF Walk to Cure Diabetes ~ Part 2

Today marked our 7th year walking for to find a cure for diabetes. 7 years! At times it feels like it's been so much longer; other times it feels like it was just yesterday we were in the hospital, learning how to test blood glucose levels and inject insulin.

The walk for me is a bag of mixed emotions. On one hand, I love the event and the way it brings so many people together. I love the rally, and the sense of hope, albeit fleeting, about the possibility of a cure. But I hate the reason why we're there. I can't stand that there are so many individuals, both children and adults, that live with type 1 diabetes, and I especially dread the stories of loss we hear each year, about a child taken too soon, or a college student who died from a low because they lived alone. But as long as Dylan has diabetes, we will walk year after year, building on memories and creating new experiences.

It's strange how certain moments or experiences are permanently etched in our brains, providing a vivid snapshot that doesn't seem to fade over time. Other memories grow weaker with the passing years. Our first walk is one of those burned on memories for me. It was in May of 2006, 6 months after Dylan's diagnosis. We were so new, still so unaware of what it really means to live with type 1 diabetes on a permanents basis. Dylan was still honeymooning and everything seems pretty straightforward. Almost easy. Little did I know that a charity event on a warm May day 6 years ago would change my life forever, because it would be the first time that I truly realized the magnitude of this disease.

That first year we arrived at the walk site early, and we did what we do every year. We dropped off our pledges, picked up our swag bag, and proceeded to visit all of the sponsors and exhibitor booths. I remember we had so much free stuff in our bag that lugging it around for the 5km walk wasn't easy! We crossed the finish line and everything seemed ok. Dylan's blood glucose level was great, he had no problem with the distance, and we had a nice turnout of family. It was shaping up not only to be a day to remember, but to be a day to look forward to each year.

And then, 10 feet over the finish line, Dylan turned to me, with a look of pure intrigue, and said, "Is that it mom?"

"Yes," I said, "The walk is finished, we did it!"

To which he asked, "So I don't have diabetes anymore?"

Whoa, stop right there! Had someone just punched me in the stomach? I couldn't breathe, and I literally did NOT know how to respond. We had talked about the permanence of type 1 diabetes on numerous occasions, but Dylan was 5. I really had no idea how much he actually understood, versus how much he wanted to understand. After a few forced breaths I finally managed to gather my thoughts and respond, "No sweetie, you still have diabetes. What made you think it was gone?"

His response is one I will never forget. He looked me square in the eye and stated matter-of-factly, "because it's the walk to cure diabetes. We walked, so my diabetes should be cured, right?" That's my guy. Always thinking logically, way ahead of the pack, even at the age of 5. (For years after this event, as I became more and more involved with my local JDRF chapter, I seriously contemplated telling them this story and suggesting that maybe they should consider renaming the walk.)

So every year when we walk, I remember that 5 year old boy with his innocent, yet valid, inquiry. And while we may have added many great walk memories to the list since then, this one will always stand out.

2012 JDRF Walk to Cure Diabetes ~ Part 1

Since 2006, our family has participated in the JDRF Walk to Cure Diabetes in Vancouver every year. We fundraise, we wear team shirts, and we walk proudly on this special day. It's a day when everyone affected by diabetes; be it type 1, type 2, LADA, or type 3; can unite for a common purpose: to spread awareness and help raise funds for research.

This year, however, we've been busier than usual. Life has gotten in the way of our regular preparation for the walk. I didn't do any major fundraising this year - no pub night, no team barbeque, no school coin drive. I really only started asking our regular donors for their support this weekend. If I'm really honest with myself, I know it's not that I have been too busy, because if I really wanted to make it happen this year, I would have found the time. I just didn't want to do it. After years of going full throttle on the fundraising, I'm burnt out. I need a break. So we've toned it way down and are doing minimal fundraising this year. Dylan has set a personal goal to raise $1000, but that's it for us this year.

A part of me reads that previous paragraph and is ashamed of myself. How dare I feel like I need a break? What right do I have to feel burned out? What about Dylan? He's lived with diabetes every minute of every day since November 21st, 2005. Six and half years of finger pokes, injections, site changes, carb counting, basal adjustments, and me constantly asking how he's feeling and what his last bg reading was. Over 2370 days; more than half of his lifetime. And he doesn't complain, ask for a year off, or feel burned out. He keeps plugging along, making the most out of his disease, by owning it and never letting it stand in his way. He is a better person than I am, that's for sure. A much better person.

The JDRF Walk to Cure Diabetes is one of Dylan's favorite days of the year. Why? Because it's the only day of the year that he feels completely normal. Having diabetes doesn't make him stand out on walk day. He can whip out his meter, plop down on the grass in the middle of a crowd to do a quick bg check, and no one even bats an eye. He can pull out of his pump to bolus for his lunch and no one does a double-take. No one asks how he got diabetes, or gives us suggestions on how to "cure" it, or eliminate his need for insulin. In fact, no one talks about diabetes at all. The walk is about celebrating life DESPITE diabetes. It's about sharing experiences and stories with others. And it's about realizing the we are not alone in this battle. There is a huge and wonderful community of people who are going through exactly the same thing we are. People who understand the daily struggles, the highs and lows, and the overwhelming feelings. People who get it.

So if you want to join us on walk day, we will be walking in Stanley Park, on Sunday, June 10th, at 11:00am. Or should you wish to make a contribution to JDRF and help Dylan meet his fundraising goal, click the badge in the top left corner of this site, or click here. Thank you in advance for your support.

Teach a Man to Fish ~ D Blog Week, Day 2

Living with diabetes (or caring for someone who lives with it) sure does take a lot of work, and it’s easy to be hard on ourselves if we aren’t “perfect”.  But today it’s time to give ourselves some much deserved credit.  Tell us about just one diabetes thing you (or your loved one) does spectacularly!  Fasting blood sugar checks, oral meds sorted and ready, something always on hand to treat a low, or anything that you do for diabetes.  Nothing is too big or too small to celebrate doing well! 

One perfect thing. Hmm. To be honest, when I first read this topic I thought of all the things I don't do perfectly; all the things I could do BETTER. I'm human, I make mistakes. Even when it comes to diabetes care for my son. 

Sometimes I forget to take a tester when we leave the house. We test a lot but could always test more. I'm not bang-on every time when guessing carbs (though I am pretty darn close most of the time, thank you very much). I let the infusion set go an extra day if it looks good and is still working properly. I tend to over-treat lows. I'm scared to bolus a high bg in the middle of the night out of fear that Dyl will get too low. I hold my breath when I enter his room to check a nighttime bg and I don't release it until I know he's still breathing.

Could I do better? Definitely. But there is one thing I have done very well; the one thing I really pride myself on when it's comes to diabetes. And that's teach. I've taught Dylan how to take care of the majority of his own diabetes care because I can't be there every minute. I oversee everything, of course, but for the most part, he's got it. He does his own tests. He counts his own carbs (sometimes better than I do). He is the master of his pump and knows its ins and outs as if it's a part of his own body. He can change his own infusion sets, though he prefers not to. He treats his own highs and lows. And he knows when to ask for help. 

The most powerful tool I've given him, however, is the belief and understanding that diabetes does not define him. It is a part of him, but not all of him. He can do anything he wants, eat anything he wants, be anything he wants. Diabetes has not, does not, and will not, EVER, stand in his way.

The First Time I... ~ HAWMC, Day 28

The First Time I... Write a post about the first time you did something. What is it? What was it like? What did you learn from it?

The first glucagon shot I ever administered to Dylan was one of the scariest moments of my life. Dylan was having his second hypoglycemic seizure (though his first with me; he was with his father the first time he had a seizure). I had been trained on administering glucagon way back when Dylan was first diagnosed with type 1 diabetes, but had never actually needed to use the shot.

The rest of this post is an excerpt from the previous post Dear Seizure. It has been adapted slightly.
"I rolled Dylan onto his side as best I could, while trying to console my daughter, who was 4 at the time, and sobbing, while my husband raced downstairs to the kitchen to get the glucagon shot (in hindsight, I now keep one in my bedside table). He couldn't find it. "What does it look like?" he called from the bottom of the stairs. "Hurry," I screamed, "It's in a long, thin white box."

OMG, in that brief time, I thought I was going to lose my son. I have never been so frightened. I sat there helplessly watching my baby seize, unable to do anything to help him. Suddenly my husband reappeared in the doorway and I felt the hugest sense of relief seeing him standing there with the diabetes supplies, while I thought, "We weren't too late." He had been unable to locate the shot itself, so he brought upstairs the entire rubbermaid container, in which we keep ALL of the diabetes supplies, and dumped it out on the carpet. I grabbed the glucagon and began to prep it, desperately trying to remember my diabetes training from almost 2 years prior, when the nurse had shown us how to prepare the shot.

My hands were shaking so badly and everything around me seemed to be spinning. I was crying. The only thing I could think of was "please don't die, Dylan, please don't die." I tried to stick the needle into the vial and hit the metal rim instead of the rubber dam. The needle bent to a ninety degree angle, but it didn't break off. I pulled it back straight and tried again. It went in. I shot all of the water in and shook the concoction, way too quickly, and it was all bubbly and foamy. I didn't care, I was desperate and my baby was still seizing. I drew at much as I could into the syringe and when I saw that the syringe was half full, I rammed the needle into Dylan's thigh so hard that if he could have screamed, he certainly would have. I injected what fluid I had in the syringe and then repeated the process, drawing up the last bit of glucagon in the vial and injecting it into his thigh again.

Finally, after what seemed like an eternity, the seizing slowed and then stopped. Dylan was still unresponsive, but after a few minutes his eyes started to focus and he looked at me. In that moment I knew the seizure was finally over. It would still be a long night ahead, as I monitored Dylan and checked his blood every 15 minutes for the remainder of the night, though within 30 minutes of the glucagon shot, he was up to 16.9 mmol/dl (304 mg/dl)."

We Made It!

Well, I survived. 11 days on vacation with his dad, and me having no control over Dylan's diabetes care and I made it. WE made it. Tomorrow they board a flight in Jamaica and return home with photos, memories, and a ton of pump data for me to analyze.

I can't say I haven't been absolutely sick with worry the entire time because I have. I have thought about about Dyl so much of every day, wondering how he's doing, how he's managing highs or lows, and how his carb counting skills are doing with all of the exotic food he's been exposed to. I've worried about the heat, the change in routine, and the extra exercise, not to mention the general worry about safety while he and his brother are in a different country without me.

Before he left, Dyl and I reviewed so many things, including temp basal rates (for heat and extra exercise), square boluses (for the all you can eat buffets), and pump storage while swimming (to prevent theft and to keep insulin cool). I knew he as ready; he went away with his school for 5 days in January and absolutely rocked his diabetes care, but the teacher in me had him review, review, and review again. I asked him to text me if he had ANY questions, and to update me once during the trip so that I didn't go completely crazy with worry.

Last Wednesday morning he called me, around 11:00am my time, or 1:00pm in Jamaica, ready to recite 5 days worth of numbers for me. Wow, what a trooper! At the time he called, I was boarding a tram to go up my local mountain and spend the day snowboarding with my daughter, so I asked him to give me the mini-version.

"Numbers have been good," he said. "A few 12's and 13's (216-234 mg/dl), but otherwise all in range. No lows." Three little sentences and I felt a massive weight lift off my shoulders.

"Are you having fun? What have you guys been doing?" I asked.

"Well, we went horseback riding yesterday, and this morning we went sailing and then jet skiing," he responded.

"Fun!" I said, "Liv and I are just about to board the tram to go skiing for the day, so I can't talk long."

"Aww, lu-cky," he said. That's my guy, always knowing how to warm him mummy's heart.

"Dude, you're the one in Jamaica!" I laughed.

That was the last I heard from him, but no news is good news. I can't wait to see him and his brother tomorrow!

Loosening the Reigns A Little

How do we, as D-parents, let go of the need to be in control of every aspect of our child's diabetes care? Is it even possible? For six and a half years I have attended virtually every medical appointment, A1c test, eye exam, and prescription pickup. I have sat in the IEP meetings, attended the research symposiums, and handled basically all of the day to day diabetes routine. Until this week.

It's no secret that Dylan's dad and I are divorced. We share custody, but Dylan has always resided primarily with me. Over the years he has spent more and more time with his dad, and recently we switched to a 50/50 access schedule, meaning that Dylan spends one week with me, then one week with his dad. But, as mentioned above, I have handled the overwhelming majority of the diabetes care since Dyl's diagnosis and that remains the same today. Until this week.

I have always tried to encourage Dylan to be as independent as he can with his diabetes care so that he can take complete responsibility for it one day. And so far he is well on his way to being able to do that. But planning for his independence far in the future, and actually relinquishing control, are too very different things. Until this week.

This week Dylan is on vacation with his dad and older brother, leaving me completely out of the diabetes loop. It is the first real vacation they've ever had with their dad. Sure, he's taken them on short jaunts here and there, by car, for 3 or 4 days, but they are always within a few hours of home, close to hospitals, and available by cell phone, email, and text. They've never traveled anywhere far away with their dad, especially to an international destination. Until this week.

Last Friday they flew to Jamaica for 11 days. That's 11 days of not knowing how his blood sugar will react to the hot humid weather, increased exercise, or different food. 11 days that I can do nothing but trust another person to look after my baby and keep him safe. For me, putting Dylan's life in the care of another individual, regardless of who it is, is the hardest part of all.

So here I am 4 days into the 11. Full of worry, but staying strong. So far. 7 days until I exhale.

Blindsided by Highs

Diabetes is anything BUT predictable, meaning what works today may not work tomorrow. Yet we must trust that when we regularly check blood glucose levels, count carbs accurately, change infusion sets every few days, and don't drastically change activity or stress levels, that numbers should be in range, at least MOST of the time, right? Wrong...

Yesterday morning we returned from a 4-day train trip to the Rocky Mountains and back. Just over 500 miles each way, with a lot of sitting and eating. But we kept a close eye on Dyl's sugar level and he was in range almost the entire time. All day yesterday glucose was good, then Dyl tested right before bed and...WHAM! 18.2 mmol/l (327 mg/dl). Um, hello high, where did you come from? We decided to change his infusion set, then bolused for the high. He went to sleep and I rechecked him just over two hours later (yes, I should have checked sooner, but I totally thought the set change and bolus would take care of it...stupid mistake). Rather than having come down quite a bit, as he should have, he was up to 28.8 mmol/l (518 mg/dl)! Holy crap, I don't remember the last time we saw a number anywhere near that high. Another bolus, this time of 7.1 units (which at night is enough insulin to scare the sleep right out of me) and we checked again an hour later. This time 24.5 mmol (441 mg/dl). Finally coming down.

Cut to this morning and his sugar was right back where it should be, and I am left wondering what happened? We did everything just as we always do and yet the result was drastically different. The only major change in our routine was the train trip. Delayed reaction to decreased activity? Perhaps. Just another day of riding the diabetes roller coaster? Definitely.

Hope vs Acceptance

When Dylan was first diagnosed with Type 1 Diabetes six and a half years ago, I was adamant about doing everything I could to help to find a cure; I fundraised, I volunteered, I advocated, and, above all, I hoped. My hope that a cure would come in Dylan's lifetime was so unwavering that I would stop at nothing to see it into fruition. And we were not among the parents who were told by medical professionals that a cure would be found within five, or even ten, years. I clearly remember our endocrinologist saying that she felt a cure for Type 1 Diabetes would be available by the time Dylan was my age (I was thirty at Dylan's diagnosis, he was three days shy of his fifth birthday), but that there were no guarantees. Yet I jumped into my advocacy as if a cure was imminent.

Those first few years, Dylan and I used to talk often about what a cure would mean to him. He was young and a cure would mean freedom from this new restrictive lifestyle. It would mean no more injections, no more finger pokes, no more counting carbs, no more mom obsessing over his every move, no more constant worrying (well, the latter two would probably continue regardless, I am a mom after all...).

Then when Dylan was nine, he volunteered as a Youth Ambassador for JDRF and gave a number of speeches to corporations about what it was really like being a child and living with type 1 diabetes. At the end of each speech he always spoke briefly about what a cure would mean to him. His speech ended with,


"What would a cure mean to me? A cure for diabetes would make me feel free. Free to eat what I want, when I want. To eat my Halloween candy on Halloween and my Easter eggs at Easter, free to be just a regular kid. Right now there is no cure for type-1 diabetes, but we can change that with your help. This June, join me and the many other children, teens, and adults with diabetes as we walk to find a cure, so kids like me can live happy and free. I don’t let my diabetes get me down, but I do want a cure so I don’t have to deal with diabetes every minute, every hour, every day."

That was only two years ago, and yet so much has changed. At eleven years old, Dylan has become a young man, and has become so responsible with his diabetes care. The disease has been fully enveloped into our lives; it is routine, in a way. And sometime in the last two years, Dylan and I stopped talking about a cure. It wasn't that we stopped believing, or gave up hope. Maybe it was due to the fact that he could no longer remember life without diabetes; or perhaps it was that those conversations simply took a backseat to everyday life. Whatever the reason, a cure was no longer on the forefront of our minds. We went from hope to acceptance.

Fast forward to last week, when I got a mass email from the Canadian Diabetes Association asking individuals to share their stories. They want Canadians touched by diabetes to describe what a cure would mean to them, and post it to the CDA Facebook page. Readers will then vote on the stories, and the author of the story with the most votes will win an iPad 2. I really didn't think anything of it at the time, but later I realized how long it has been since Dylan and I had talked about a cure. 

That same evening I asked Dylan what he thought. I didn't ask him if he hoped for a cure, because we all know the answer to that question; I asked him if he still thought about a cure. His response came immediately, without any hesitation. "Every day," he said. "Really?" I asked. "Yes," he replied, "but I try not to worry about it too much. I've accepted that diabetes is my life, so I deal with it." That was it, end of conversation.

As the tears inevitably flooded my eyes, I stood up and left the room. I was literally unsure of how to feel about his response, and I'm still torn. A part of me is so proud of him for his mature outlook and acceptance, partly because it would break my heart to learn that he pines for a life he may never have, and partly because, in the long run, this attitude will likely lead him to take better care of his diabetes as he gets older. At the same time, however, hope is important; believing that a cure is out there somewhere can provide solace and comfort in times of need and desperation.

So I guess my question for readers is: At what point, if ever, do you give up hope for a life free of diabetes and simply accept the life you've been given?

It's All Part of the Process

Learning anything new takes time and practice. Be it diabetes care, or learning to play a musical instrument, it is an ongoing learning experience. Tonight, Dylan had a "senior band" (senior meaning the kids are 2nd year and not brand new to their instruments) concert at our local high school. With 4 different elementary schools, and an abundance of proud parents, it was a pretty big deal. I was nervous for him, and even more so after he had a 3.1 mmol/l (55.8mg/dl) blood sugar reading minutes before the concert began. Some fast-acting sugar later, I sat in the bleachers and watched my son play his heart out to "Funkytown" on the sax, while we played our secret game of "thumbs up/thumbs down" (thumbs up = sugar level feels good, thumbs down = feeling low) across the gymnasium. Two thumbs up during the performance and I was one proud mommy!

Dylan is right of center, with the blond bangs

Like diabetes care, we are far from mastery of the saxophone, but we are well on our way!

Take that Diabetes!

The search for a cause of Dylan's headaches has now brought us full circle. We have gone from blaming diabetes, to questioning his eye sight, and back to diabetes as a cause again. When I first thought diabetes was the culprit, I assumed it was high blood sugars that were giving Dylan headaches, but when we tracked the headaches, there was absolutely no correlation with elevated blood sugar so we eliminated D as a cause.

Then this past Friday, Dylan had his quarterly checkup at the Diabetes Education Center of our local hospital. After speaking with his endocrinologist about the headaches, she thinks that they may, in fact, be a result of D. Her belief is that they are an after effect of low blood sugar. When I heard this, it sounded vaguely familiar. I remember reading some comments from type 1 adults that compared the feeling of over-treating a low to a hangover. Does treating, or perhaps over-treating, a low result in a headache? And if so, is there any way to avoid this?

On a separate note, Dylan did a victory dance for his endo at the appointment Friday. His last A1c was in early December of last year and we were both very upset to see a result of 8.7. It was the highest he had even been and I felt like a complete failure as a d-mom to let his A1c get that high. The 8.7 was the direct result of Dylan being very nonchalant about his testing. He was great testing at home, but was neglecting to test at school, resulting in too many highs. His endo wanted to see a reduction of a full point, bringing his A1c into the upper 7's by the next appointment. A tough task indeed. We both vowed then and there to be more vigilant about testing, determined to bring that 8.7 down to a healthier level.

So were we successful? Not only did Dyl get his A1c into the 7's, he got it down to 7.1!! Personally, I would still like to see it lower, but we are celebrating this victory nonetheless. Take that diabetes!

"See"king Answers

Headaches can be quite a nuisance, and trying to identify their cause can be equally annoying. As I posted yesterday in Blame Diabetes, Dylan has been getting frequent headaches for the past few months and we have been unable to figure out why.

Originally I assumed they were blood sugar related, but after some simple tracking I quickly ruled out diabetes as a source. My next thought was that they were an allergic reaction to something. We saw our family doctor and he gave us some suggestions on how to check for a food allergy, but so far we've come up empty-handed. Dylan is currently on a waiting list to see a pediatric allergist, but the wait is almost a year, so it will likely be autumn before we get in.

Then Dylan came home from school a few weeks ago complaining that he was having difficulty seeing the overhead projector screen from his desk, leading me to think he was straining his eyes and needed glasses. He was due for his annual eye exam anyway, so we went in yesterday to see the optometrist. Another strike-out. Dylan's eyes are close to perfect, and while he has a -.25 in each eye, it is not enough to warrant glasses or to cause headaches. The optometrist was not at all concerned, and informed us that vision can fluctuate a little bit during growth spurts, and with diabetes. He expects it will stay the same or return to normal by next year's appointment.

I'm happy for Dylan that he doesn't need glasses (he really didn't want them), but I'm frustrated that we still have no idea what is causing his headaches. He has his quarterly DEC appointment (A1c test and visit with the diabetes team) tomorrow morning, so maybe his endo will have some answers.

And for the record, the results of his pupil dilation test (to check to any signs of diabetic retinopathy) were perfect. His eyes show no signs of any problems whatsoever.

Blame Diabetes

Suffice it to say I do this far too often. Diabetes is on my mind for such a large proportion of each and every day that I tend to hold it accountable for any problem in Dylan's life. Sure, a lot of the time it's warranted because diabetes is the culprit, but from time to time there are other factors at play. After all, he is an 11 year old boy. He CAN and WILL get sick, scraped, scratched, bruised, banged up, and heartbroken as he grows up, and many of those times it will have nothing to do with diabetes.

On and off for the past few months, Dylan has been battling headaches. Some are minor, some more intense, and some even causing nausea they are so powerful. At first, I wrote them off as normal, stress related aches and pains, but their persistence has me concerned.

My immediate reaction was that they were blood sugar related; that he was getting headaches when his blood glucose level was high. In fact, I was positive this was the cause (always quick to blame diabetes). So we started tracking patterns. Every time he had a headache we'd test his blood sugar, but we quickly learned that there was absolutely no correlation between his sugar levels and headaches.

Back to the drawing board we went, unable to figure out the cause of his discomfort. Fast forward to a couple of weeks ago when Dylan came home from school and told me he had been having trouble seeing the overhead projector screen from his desk in his classroom. As the metaphorical lightbulb flashed in my brain, I wondered, "Could it be that simple? Does he need glasses?"

He is due for his annual eye exam (the one with the pupil dilation) anyway, so I called the optometrist and made an appointment for Dylan to have a full eye exam. We see the doctor this afternoon, so hopefully I'll have some answers soon.

1st Live Performance

Last month I posted about Dylan's new singing pursuits, in A D-Mom is Superwoman. He joined a performance company last September, after watching the students perform at a benefit concert last year. The concert he saw at the time was entitled, "Pumped for the Cure," and it was a fundraiser for our TEAM DYLAN, with all of the proceeds going to JDRF. He was so impressed with the quality of the performers, that he couldn't wait to join himself.

Dylan had his first live performance just before Christmas and I had mentioned that I would post clips soon after. Oops - I totally forgot, so here they are now! Both of these are group performances. In the first he's singing only, and in the second he's playing the saxophone.

Dylan (left) singing "Twist & Shout". Can you see the pump bulge under his shirt? I can.

Dylan (left) playing sax for "Crabbuckit"

His next performance is Sunday, Feb. 12, when he will perform, solo, Frank Sinatra's "Come Fly With Me." Just one more thing for which we DON'T let diabetes get in the way. EVER.