Category: Diabetes

Trust, Insecurity and Double-Checking

franciscanmom7 Comments

My child’s life depends on double-checking.

He has a continuous glucose monitor that constantly checks his blood sugar–but at least twice a day he has to do a finger stick to double-check that the monitor is correct.

dexcom g4When he leaves the house, we’re always asking him if he has his supplies (and the receiver to his monitor, which he removes from his pocket when he comes in the door. His routine:  take off shoes, take monitor out of pocket.)

I’m OK with that, because he’s a kid.

But when someone double-checks ME, it never fails. I get all bent out of shape, and I react in a manner that’s WAY out of proportion with the situation.

Just this morning:  I woke Little Brother up in time for him to get ready to go to theater camp. I asked what he wanted for breakfast and we figured out the carbs. As I scrambled eggs, he gave himself a shot. I wrote down his blood sugar, carbs and dose of insulin and went back to the stove to finish the eggs. Hubs walked in and asked Little Brother if he’d had a shot yet.

“I’m RIGHT HERE with him,” I yelled.

It’s not Hubs’ fault for double-checking. This is MY problem. Double-checking is important, but when someone double-checks me, I get all sorts of offended and upset. I feel like they don’t think I’m good enough to manage the task on my own. I feel like I’m not being trusted to do it.

There is no room for insecurity like that when it comes to dealing with diabetes. Hubs and I need to work as a team–and we need to be able to double-check each other and communicate well.

I could have just answered, “Done.” I could have said, “I wrote it down.” I could have just given a thumbs-up and turned back to the stove.

What am I so afraid of, anyway?

Fighting the Fear

franciscanmom11 Comments

What a difference a year makes.

union soccer schoolsLast summer, Little Brother spent a week at a soccer day camp affiliated with the Philadelphia Union pro soccer team.

This summer, he’s doing the same, starting Monday.

Last summer, all I had to worry about each morning was whether he had enough to drink to prevent dehydration.

If this summer were just like last summer, I’d be telling him that he’d be packing his own lunches this year.

But this summer everything is different. This summer there’s an insulin pen and a continuous glucose monitor to think about. This summer I have to pack enough food and Gatorade to keep his blood sugar stable during a very active day, and he has not had a day this active since his diagnosis in November.humalog kwikpen

For me, that’s scary.

I don’t want him to be scared. I’m trying to keep all of that emotion hidden from him. He’s 12. He should be excited and ready to have fun, meet other kids who love soccer as much as he does, and learn skills that will help him play his favorite sport better.

But he’s going to need to take care of himself this week, to check in with the nurses during breaks, to eat and drink enough to fuel the activity and the adrenalin. He’s going to have to be “different.” This camp has nurses, and I’ll meet them on Monday and hand them his care plan, and then I’ll walk away for 7 hours and spend the day wondering if his sugar is dropping.

I’m thankful that the camp is less than ten minutes away from home. But I’m terrified, and I don’t want to let that show.

dexcom g4Those easy camp dropoffs are a thing of the past, and I regret that I ever took them for granted. I feel like we have taken a huge step backward in terms of the independence Little Brother is developing and we are allowing him to have. I want him to be able to do things on his own, but at the same time I can’t help wanting to hover over my kid and the glucose monitor that helps us keep him on the right track–that helps us keep him alive.

I’m not writing this to ask for pity, but I’m not too proud to ask for prayers–for a safe week for Little Brother and for peace for this mother’s heart.

 

 

 

Walking a Fine Line

franciscanmom13 Comments

For the last two months or so, Little Brother has benefited from some wonderful technology that helps with his diabetes care.

dexcom g4

This continuous glucose monitor checks his blood sugar every 5 minutes, allowing us to get ahead of highs or lows–and those lows are happening with greater frequency now that the weather is fine and he’s spending hours on end in the pool. In addition, the routines and schedules around schoolday mealtimes are not in place in the summer, so we can use all the help we can get.

But I got a phone call yesterday from the manufacturer of this device, informing me that our insurance won’t cover it because the diabetes medical provider used a certain diagnosis code. If a different code were used, this would be a no-brainer. Our provider used a code that means “diabetes with no complications.” If they had used the code that means “diabetes, uncontrolled” we could have the CGM.

So basically we’re too good at caring for our child to qualify for the technology that helps us care for our child.

Little Brother has a picture-perfect A1C (an average blood sugar over 3 months). For 2 of those last 3 months we have had the CGM to help us keep him there. But in the last few weeks, his sugar has been on a roller coaster, what with swimming and backyard soccer and sleeping late and eating at friends’ homes where Guess The Carbs is a spectator sport. In the past 2 weeks he’s had several scary lows, including last night when he “pinned” that meter at 40 for more than 10 minutes (a blood test, at one point, showed his glucose level at 37).

If that’s not “uncontrolled,” I don’t know what is.

We need all the help we can get, and his provider and the insurance company are making it really difficult for us to do that without incurring crazy out-of-pocket expenses.

Diabetic Negotiation

franciscanmom8 Comments

Little Brother almost always eats the same breakfast:  an everything bagel with butter and two scrambled eggs.

This morning he was looking for something different.

eggo chocolate chip“I got some chocolate-chip Eggo waffles at the store,” I said.

We checked the label. Two waffles have 31 carbs. Four waffles have 62, which is almost exactly the same as his bagel-and-eggs combo.

“I’ll have four waffles,” he decided.

I asked him if he wanted any eggs, reminding him that without them, he might find himself hungry later this morning.

“There’s protein in the waffles,” he said. “It comes from the chocolate chips.”

I Am Mommy. Hear Me Roar.

franciscanmom5 Comments

On Tuesday, Little Brother is going on a field trip. That’s the kind of thing that happens in May. Since we live very near Philadelphia, his school often schedules field trips that take advantage of the many historical and educational resources of that city. This year they’re visiting a seaport museum and wrapping up the day at City Tavern, where they will be served a Colonial-style meal. city tavernThe students will dine on Tavern Country Salad with raspberry shrub dressing, lightly-breaded chicken breast, mashed potato, vegetables, Thomas Jefferson biscuits, Sally Lunn bread, and fruit cobbler.

That’s a far cry from the brown-bagged PBJ, juice box and granola bar he usually gets on a field trip.

I got in touch with City Tavern to ask for nutrition information about their food. After playing phone tag with their events coordinator for several days, she finally called me back this morning and very sweetly assured me that she’d speak to the chef and find out what I needed to know.

Two hours later she called me back and informed me that I was out of luck. While she could list all the foods they’d be eating, she couldn’t get me any nutrition information. Since they’re not a chain, they don’t have to provide that, and clearly they aren’t interested in doing so.

It’s really not fun to play Guess the Carbs in a restaurant, and I was hoping that since we’d inquired ahead of time (and I made the first call more than a week in advance of the trip) that the restaurant could help us figure things out.

denied

The restaurant’s website urges visitors: “In order to help us maintain a historic atmosphere, please refrain from the use of cell phones.” Well, that’s NOT going to happen, since Hubs will need to consult the Calorie King website to try to figure out what the restaurant refuses to tell him, despite the other thing they mention on their site:  “Should you have any culinary requests, please do not hesitate to ask any member of our staff.”

I guess nutrition information isn’t considered a “culinary request.”

We can guess on things like mashed potatoes and vegetables and even the chicken. But Little Brother has eaten there before on a field trip (before diabetes) and he was all about the bread. I did a simple google search on “Thomas Jefferson biscuits” and the third result is that restaurant’s own recipe.

nutrition city tavern philly Jefferson sweet potato pecan biscuitsIt took me less than three minutes to plug that recipe into the analysis tool at Calorie Count and generate a nutrition label. I’ll be printing it out, along with the recipe, and packing it with Little Brother’s diabetes supplies that Hubs will be carrying on the trip.

I hope Hubs hands them that piece of paper on his way out.

If he doesn’t, I’m mailing it in.

All I requested was information. Not trade secrets. Not recipes. Just nutrition information because my child has a medical need that requires me to know what’s in the food he eats. And as I just proved, this information is not difficult to acquire.

You’re next, Sally Lunn.

Feeding the Hungry (and Allergic)

franciscanmom7 Comments

To the mom who was so apologetic about mentioning her daughter’s dairy allergy to me at dinner the other day:

Do not feel as if it is an imposition on me to tell me what I need to know in order to safely feed your daughter.

With a bit of advance notice and an opportunity to bounce ideas around with you, I can come up with safe alternatives. I don’t want you to have to feel like you need to send “special food” with her wherever she goes. (Or, at the very least, when she comes to dinner with us.)

tomato pieIt is both a corporal AND spiritual work of mercy to honor someone’s medical dietary needs.

The corporal part is obvious. I think the spiritual part falls under the category of “comforting the sorrowful.”

When your child has special dietary needs, it’s tough on parents. By comparison, I have it “easy” with a diabetic. We just need nutrition labels and insulin. It’s not that he can’t have something.

I get a lot of “what can he have?” from people who don’t know how diabetes works. That is an opportunity to gently educate (“instruct the ignorant” in a way). I do know that the people who ask me this question are acting on a generous impulse, and I appreciate it. I appreciate even more when they ask first, rather than investing in expensive special foods like sugar-free candies, which are much less diabetic-friendly than people think.

So when I ask what your child can have, I intend to provide that. She’s singled out enough. You have to bring special food for her most, if not all, of the time. I wouldn’t offer to find something that works for her if I wouldn’t gladly do it. I am happy to find a way for her to enjoy the meal that all her friends will be sharing.

(And don’t worry–I left out the Parmesan on the tomato pie.)

Small Success: Midweek Crazy Edition

franciscanmom3 Comments

I’m glad to be linking up again at CatholicMom.com for one of my favorite features:  Small Success Thursday!

Small-Success-Thursday-400px

It’s been a kind of crazy week. From 3:15 to 7 PM each day I’m at the high school serving dinner to 100 kids. (My poor husband is fending for himself this week.) Little Brother comes along, because he takes the school’s slogan to heart:

you belong here

-1-
I am doing what I love this week. The spreadsheet just might kill me, but I’m sorting out drinks and paper plates and condiments and forks and what-goes-where and how-much-we-need and finding creative ways to use leftover food (taco beef from Tuesday is in the freezer, waiting to be part of Monday’s chili) and brainstorming with moms about chili alternatives because not everyone eats chili.

-2-

I am managing to be super-flexible this week, which for me is huge. When a few other moms approached me about chili alternatives I didn’t blow a gasket. I was only a tiny bit insulted (mostly embarrassed because I hadn’t thought of that, and my job this week is to be the Mom Who Thinks Of Everything.) Of course, I can only be flexible in this situation because I have been so busy Thinking Of Everything…so we’re going to have Chili/Dog Night on Monday. Hot dogs, 4 kinds of homemade chili, leftover mac & cheese (we had 4 pans too many last night), chips, salad and quesadillas.

-3-

I just gained 30 minutes a day. Little Brother had an appointment at CHOP yesterday with his endocrinologist nurse practitioner. She amended his glucose-testing schedule because of the timing of snacks and meals during the school day–so he won’t be testing at lunchtime. This means I can show up at 10 for the test-and-snack-and-argue with the nurse routine (Little Brother, not me) and then be done until 3 when it’s time to pick him up after school. Little Brother will have to see the nurse to get insulin to cover the carbs in his lunch, but I don’t need to be there for that. Overall, they are pleased with his progress–his A1C was 6, which translates into a blood-glucose of 120 on average for the past 3 months.

I had been going to school (at my child’s request) at 10, again at noon, then at 3 to pick him up. That’s a lot of time, a lot of gas, a lot of knowing I had to drop what I was doing soon and get back to school. So I am hugely relieved. I will be there for the 10-AM test because there will be a judgement call involved and he’ll argue for something that is not always the best alternative. I’m kind of the mediator between him and the nurse!

I know how I’ll spend my extra 30 minutes today–exploring the rest of the Small Success posts! Do you have a Small Success to share? Stop over and link up or leave a comment at CatholicMom.com!

Small Success Thursday: New Blog Edition

franciscanmom8 Comments

Small-Success-Thursday-400px-1-

Shortly after Little Brother was diagnosed with diabetes, I received a message from my friend Katharine Grubb (she’s also an author! You should read her books!)

She was urging me to begin a new project. As if I need more new projects. She wanted me to use the information I was gathering about cooking for my Type 1 Diabetic child and share it with others who could use it.

I knew she was right, but I had to let some things settle in first. Finally, yesterday, I took the plunge and pressed the “publish” button on my new cooking blog.

Cook and Count has the carb-per-serving count for each recipe I feature. I also plan to include Little Brother’s story as well as other things we learn about dealing with diabetes as a family.

-2-

I taught FIRST grade the other day when they needed a substitute at school! I used to teach first-grade Spanish, but I had a new batch of kiddos every 35 minutes. All day long is another story entirely, but we had a great day. Best line of the day, after I wrote my name on the blackboard:  “I can’t say your name! It has too many words!”

-3-

I’m taking advantage of the better weather (and lack of early-morning ice)–I got to Mass twice this week and the gym once. I’m hoping to do better on both counts, but it’s a start.

Stop over to CatholicMom.com and read about everyone’s Small Success! Share your own in the comments or link to your own blog!

Murphy’s Law and Conference Calls: My Day in a Nutshell

franciscanmom7 Comments

I was having a pretty decent day today, until around 8 AM. That’s when it all fell apart.

As I tossed laundry into the washing machine, my daughter called. She’d left the house 10 minutes earlier and stopped at Starbuck$ on her way to school. Leaving her car running, she went in for her drink–but her driver’s side door froze shut, and all her other doors were locked, so she had to be rescued.

I hadn’t even had my coffee yet at that point.

Arriving home, I quickly downed some breakfast and got ready to go to daily Mass for the first time all month (and maybe only the third time this year). I almost fell apart when Hubs suggested that we take care of a banking errand right now. Fortunately he was willing to wait until after church.

He’s home today, because his office has no power. That means he’s been spending most of the day on conference calls.

On speakerphone.

Conference calls involving 75 computer programmers do not provide the world’s most fascinating eavesdropping, for the record.

I made my usual runs to Little Brother’s school to hang in there with him while he had his before-snack and before-lunch glucose tests and shots. He says he needs me there…I’m serving as a security blanket of sorts, I guess. Whatever helps. On my way back from the second school run, I was in Hubs’ car because he’d blocked mine in. I pulled into the driveway, listening to the Catholic Guy show in satellite radio, and suddenly heard some unfamiliar voices talking about “the primary user.”

“What the hell?!” I yelled, turning off the car engine and suddenly realizing what had happened.

Hubs was using his cell phone for the conference call. He hadn’t turned off the Bluetooth.

Fortunately, he had it on MUTE, so his career was in no way jeopardized by my hollering.

But honestly, I was really feeling like a mess today. All I wanted was a good cry and a Big Mac. I couldn’t cry until I got back from that second run, because I didn’t want to be in school with red eyes–all the kids there know me and I have to be able to smile when I see them. And I didn’t get the Big Mac, because Hubs wanted to go to lunch together at the diner.

They brought me the wrong omelet, and I got to listen to a lecture on 99 experimental treatments for juvenile diabetes.

Don’t get me wrong. I’m glad they are doing research. But I’m just trying to get my diabetic child through the next meal. I don’t have room, mentally or emotionally, for experimental treatments, the Defcon 3 Continuous Glucose Monitor, or artificial pancreases (pancrei?)

I still want that Big Mac, and I still want a good cry, but I can’t have either one right now because it’s time to pick Little Brother up at school.

Better Not to Know?

franciscanmom6 Comments

It’s Catholic Schools Week, and Little Brother’s school celebrated today with an ice-cream party for the kids. They do this every year. It’s a fun tradition.

But when you mix diabetics and ice cream, chocolate syrup and sprinkles (not jimmies–sprinkles) it’s not an easy tradition.

We didn’t want Little Brother to have to say no to the ice cream. He can have a reasonable portion (and maybe even a little bit of the toppings), but in order to “cover” that with insulin, we need to know how much ice cream he’s going to have. And that involves measuring cups. wonder cup metric

I’m at the school, on average, a couple of hours a day. Today I couldn’t be there for the ice cream, so I had to do some of the homework ahead of time. I left our measuring cup, along with a list of the carb counts for the ice cream and toppings, with the nurse.

In the middle of all of that, I ran into one of the teachers, who is herself the parent of a diabetic (also diagnosed in grade school.) She gets it, and she has been very encouraging. Today she let me know that someone (and she didn’t mention names) was wondering why I was so worried about measuring the ice cream. She told me that she’d set them straight, telling them that because we’re new to this, we’re not ready to just “eyeball” portions yet–but we’ll get there.

I think I’d rather not have known this. I am in and out of the school, because my child is just not feeling confident enough to manage this without me. I am also a substitute teacher there. The whole faculty has seemed so supportive. And now, I guess, someone supports me to my face but judges me publicly behind my back.

Thanks for that.

I know I should be grateful that there is a teacher there who has my back. But all I can think about is how someone else in that school kicked me in the gut today.