Highs & Lows can appear out of nowhere!

I feel like we've come a long way with our understanding of type 1 diabetes in six months.  Who knew we'd have to get so knowledgeable but here we are.  The thing no one can help with though is that you can do everything right, everything you've been taught, and yet...

Highs &  Lows can appear out of nowhere!

They come out of nowhere sometimes and there seems to be no rhyme or reason.  I know there probably is something: growth spurt? low-level asymptomatic illness? change in the weather? poor sleep the previous night? hormones/puberty? full moon?

N my 11-year-old with T1D has been amazing for the past six months.  He is handling it all with good humor and some resignation.  I know he isn't "sneaking" food or forgetting to bolus because there isn't a need for him to sneak and we make sure there are always two brains working out a bolus.  We are trying to teach him good habits to take care of his chronic health condition because someday he'll be out on his own and we won't be right there anymore.  

N likes cereal for breakfast.  I know, I know, there are better options but we've been assured (repeatedly) that he can and should eat what he wants and cover the carbs.  What I mean by better options is that there are carbs that have less effect on the range of blood sugar, the spike and fall.  High fiber, lower carb meals work better for that post-meal spike and several hours of blood sugar stability and we know this but we also know he is 11 and he likes cereal and he can have it.  He doesn't eat fruity choco marshmallow whatever, he eats a whole grain cereal but it is still cereal.  He gets his bolus and we wait 25 minutes to give his breakfast of 30 grams of carbs and a protein.  About an hour later his blood sugar goes up out of range but it usually comes back down within an hour.  This has been his norm for the three months we've been "distance learning" by staying home.  Same meal every morning.  The boy likes his routines!  

We've tried adjusting the time between the bolus and the meal and 25 minutes is about it.  If we wait too long he has a low followed by a spike and if we give food too early the spike stays elevated longer and the peak is higher so 25 minutes.  Until two weeks ago.  Two weeks ago the spike was 100 BG higher than previously!  It also spiked up and stayed up for 3 hours.  It came back into range about twenty minutes before his next meal & bolus would occur.  

The other thing we noticed, about the same time, is that his lunch bolus isn't working quite as well and there is a weird drop and raise between lunch and dinner.  He gets lunch at about noon and we can only give insulin every three hours due to insulin on board and not being on a pump or calculator that can help us.  To avoid "stacking insulin" we've been told to wait 3 hours before correcting with insulin or bolusing & eating.  So he eats at noon, has a smaller spike that is on the high side of in-range for him at 170-180, sometimes out of range but lasting less than thirty minutes above range.  Then at about two hours & forty minutes his blood sugar falls to the lower end of his range to around 100.  He doesn't usually want an afternoon snack; probably because he isn't going to school and working up an appetite.  He could have insulin at 3 but he often doesn't want a snack and he is in-range so none is needed.  Then he spends the next hour with a steady glucose rise until he is out of range and he stays that way until dinner at 6.  I know, I know, I could give a correction but then I feel like I have to push dinner back or worry that I'm stacking insulin.  Ugh!

We have our math, ratios, corrections, factors, etc.  We do the math as we've been taught and most of the time it works out.  But for two weeks now we've had this nonsense that makes me wonder what I'm missing.  Thankfully we can send in our numbers to the medical team at the Children's Hospital and get a professional opinion but I sent in numbers this morning by 9:30 and haven't heard anything back from them.  Since it is Friday, I assume I won't hear anything until Monday.  

So we'll keep doing what we do.  We may swap out some preferred foods for less preferred ones for a few days to try to get things back into a more preferred pattern.  Our CGM lets us look at our graphs and helps us check for patterns.  It also makes suggestions for ways to adjust when a pattern emerges and we've used this to change our long-acting insulin dose over the past week but it hasn't changed the daytime pattern and we are starting to see midnight lows again so we are holding.  

Type 1 Diabetes is just an uncooperative toddler that follows rules when it feels like it and shakes them all up when it doesn't.   Here's hoping we aren't heading into a pattern of return to the 3 am club.  Right now his glucose is in range less than 80% of the day even with corrections every three hours, and at night he is dipping below range between 11:30-12.  

I guess this is why I drink so much coffee, or wine...

It's finally here! The Dexcom G6!

It finally happened.  Our son's Dexcom G6 was approved by insurance and was overnight delivered to us yesterday.  So much excitement for this very expensive new piece of equipment.  We paid our entire out of pocket maximum and deductible for this one device but we are thrilled and believe it will definitely be worth it.

Since this is our first ever continuous glucose monitor we are very unfamiliar with how previous models worked before.  The only thing to compare it to is the finger pokes every three hours we've been doing and I am not going to miss those. With the G6 we don't need to do calibrations or finger pokes to check numbers before treating.  So we read up and watched a video or two yesterday.

This morning we did a finger poke & bolus for breakfast then we were ready to give it a try.  My son was VERY nervous anticipating that it would hurt or be uncomfortable and I was super nervous for him knowing that if it did hurt or was uncomfortable it wouldn't change the fact that CGM use is better at helping manage diabetes.

I sat him in front of the TV and distracted him with a show he likes.  I took my time and prepped the site.  I re-read the instructions, with pictures, provided with the inserter then placed it on him.  I was very nervous to push the button but he didn't want a count down so I took a deep breath and pressed.

"Uh was that it?" my son asked.

I was so happy.  He said it didn't really feel like anything.  He said it felt "like a flutter".  Two hours of warm up later and we were on.  The monitor takes readings every few minutes and starts a little chart/graph so we can see if we are in range, low, or high.  We were in range and had an hour before lunch and so back to his own entertainments he went.

Now today, of all days, dearest hubby decided he would bring home donuts from the grocery store.  He figured our son could have one with his lunch cover.  Not plain donuts, or small donuts, but a super fluffy, frosting covered, sprinkled donut.  I looked it up as best I could and figured it was between 40-60 carbs depending on what site I looked at.  So we bolus for 40g plus lunch figuring a high blood sugar later was better than low.

Here's where the dexcom is going to help us manage things.

Before, I would've checked his BG at 2:15 (snack time at school but at home he doesn't really eat a snack at this time usually).  I then would've checked before dinner at 5ish.  I looked at his number at 2:15 and his BG was 119.  In range, but surprising because I figured I had not covered all of that massive donut.  Interesting but okay.  We refilled his water and chatted a bit then off to chores I went.

At 2:30 he came out with the sensor and said it alarmed and his BG was 182.  That is out of range but he had his last insulin at 11:00 so I figure his lunch wasn't fully out but the insulin from 3 hours previous had done all it could.  We double checked our CGM with a finger poke and it was high too.  I had him drink a glass of water and said we'd look in about fifteen minutes; if it was still high we'd do a correction.  So at 2:40 he was up to 256 and we corrected with insulin.  He stayed out of range for the next few hours.  His pre-dinner number was 290!!!

Normally I wouldn't have caught the high until the 5:00 dinner.  I wouldn't have given the correction at 2:40 and who knows how much higher he would have been by dinner.  I would've had to recheck his after dinner with a finger poke but because of the CGM we just checked every twenty minutes until it started to get back into range.  By 5:45 he was back in range and had finished eating.

No surprise what happened next.  At 7:30 he had another alarm but this time it was low and dropping rapidly.  We gave 15g of juice.  So NICE not to have to finger poke for that or again fifteen minutes later...checked the CGM we were back in range at 98 with a steady arrow.  Checked again fifteen minutes later still in range holding steady.

So what do I think.  I LOVE the dexcom already.  I HATE donuts.
(Okay fine, I like donuts but I think maybe they are not worth it.)

School Days & Weekends

We send our blood sugar numbers into a team about once a week.  Sometimes they ask us to make adjustments to our ratios, correction factor, or long acting insulin.  This is awesome and I am super thankful that we live in a time when I can send information in and have someone with expertise review it and make adjustments to our care of our T1D son. 

Here is where I have some strife though...weekend numbers are dramatically different than school day numbers.  There are so many reasons I believe this happens.  I'm never sure if I should send in weekend numbers or weekday numbers or try to send in all the numbers.  The team is usually looking for 3 days of numbers. 

During a school day, our son wakes at a specific time.  He has breakfast, usually cereal, and takes less than twenty minutes to eat it.  He rides a bus to school.  He has only twenty minutes to eat lunch at school so he asks for a simple lunch that he can eat quickly.  He has two recesses outside and twice a week he has a PE class.  He does a BG check at about 2:30 and has a snack as needed to stay in range.  His weekday numbers tend to stay between 75-110. 

On the weekends, I let him sleep in a bit (only an extra 30 minutes).  He prefers waffles and bacon on his days off and takes 30-40 minutes to eat since he is visiting and relaxed.  At lunch he again takes 30-40 minutes to eat and he typically eats 20-40 more carbs at this meal than what he eats in his school lunch.  Sometimes he is very active on the weekend and other times he is relaxing and watching TV or playing video games.  Snack & dinner are about the same on weekends and weekdays.  His weekend numbers tend to range from 100-160.

When we send in 3 days of weekday numbers we often get a response that we may need to lower doses.  When we send in weekend numbers we often get a response that we may need to increase doses.  Over the past four weeks we haven't made any changes because we go back and forth between sending in weekend & weekday numbers based on when the team requests the next set of numbers. 

We're still waiting for approval on a continuous glucose monitor and I'm hoping that changes how we are watching and adjusting for my son's best health.  Until then I will keep sending in my numbers and wondering if I'm missing a necessary change because we've had lot of 3 day weekends recently:)

Wonky Numbers

Sometimes you just get a WONKY NUMBER. 

You do everything the way you are supposed to.  You give a typical day of meals, all standard fair, you cover carbs and make sure your T1D son is getting enough fluids.  Things have gone according to plan all day with numbers right in range.  Then you do the bedtime check and WONKY NUMBER.  These always seem to show up at bedtime or right before you need to leave the house.  They are never the first number of a weekend morning where you had no plans except lazing about in pajamas.  Nope.  WONKY NUMBERS are for making you lose sleep or change/cancel plans.

So things have gone fine today.  He woke up right on target.  He ate the same breakfast and lunch that he has had 100 times before.  It was not a PE day at school.  All his checks were right on target.  No corrections given all day.  So at bedtime we do the check expecting to be in range but NOPE we are at 220.  Hmmm wash your hands and test again just to be sure but yep out of range.

Now I don't want to make a big deal out of it but we have been very lucky to be in range for the past several weeks.  Things have been going along as expected and our team even gave us the green light to stop the 3 a.m. glucose check.  (this is a whole different kind of problem for a later post)

How am I supposed to sleep now?  WONKY NUMBER!!!  

What if it was a fluke and I've just corrected him so that his blood glucose plunges to an unsafe low while he sleeps?  Of course, this isn't a very likely scenario.  The likely scenario is that the insulin from his dinner shot didn't absorb well or the apple he ate was more "carbalicious" than a typical apple. (Don't get me started on how some of the fancier apples can pack twice as many carbs as the more standard brands.  Our carb counting book just gives us a generic count but some apples are very carby.) 

I know it probably isn't necessary but this WONKY NUMBER is going to ruin my sleep tonight.  I've already set my 3 a.m. alarm because if I don't check I'll be up all night driving myself crazy. 

What's for Dinner

I don't enjoy cooking.  I've never really liked cooking.  I like baking!  I like baking breads and desserts.  We don't really need me to be baking breads and desserts though and we do need to have balanced meals (ugh cooking).

We ate out a lot before N was diagnosed with diabetes.  We had dinners in sometimes but it was always so much effort.  Each person in the family has different preferences and I remember as a child being forced to eat and clean your plate.  I was a sneaky child about food.  I'd hide food in my pockets and flush it down the toilet.  I'd hide food on a ledge under the table.  I'd sneak food from my plate to the plates of those nearest me.  I would cry and carry on when forced to eat and there were several times when I actually would vomit.  I was HORRIBLE!  It isn't the flavor of food that is difficult for me; it is the way foods feel in your mouth that cause the gagging reaction.  I don't know if I had been raised by other parents that I would be any different now.  I have a very strong sense of smell and very easy gag reflex for textures in my mouth.  As a parent, I never wanted to make the food battles that had been part of my miserable dinner time experiences.  I made all new problems instead:)

I have two sons.  Pretty much whatever one likes to eat the other one doesn't much care for.  My older son doesn't like cheese but my younger son eats all kinds of cheese.  The older son likes several vegetables but the younger only eats fruits.  The types of fruit one brother likes the other brother doesn't care for.  They both like chicken strips but the kind of seasoning they like is very different.  One son likes spicy foods and the other thinks spices are too much.  Serving a meal that I think everyone will eat is not very likely at this point but you have to start somewhere.  I know that we didn't have a very healthy diet but that wasn't a big deal to me.  I figured that wasn't uncommon in families.  It is important to have a healthy diet but when the ramifications of eating the way we did were years and years off it was hard to make this a priority.  With type 1 diabetes in the family the ramifications of an unhealthy diet are NOW, right now in your blood glucose reading.  So we will all be switching to a healthier diet but how and where to start. 

Thankfully we have the help of a nutritionist and dietitian.  I know my goal right now is to get us on a regular schedule for meals and snacks and to make sure that healthy options are served and someone is modeling eating those foods.  It doesn't make the responsibility of cooking any more fun or easier.  The first couple weeks we were home I was so overwhelmed with the food.  I'd cook for an hour trying to make a healthy meal and in five minutes everyone would be "done" having eaten almost no food at all.  Little payout for a lot of effort.  As the time has gone on and we are six weeks post diagnosis I can see things starting to get easier.  So where to start?

First, I made a list of the foods that all of us eat.  Not what I thought would be best but do we actually all eat.  It was a short list: pizza, chicken strips/nuggets, waffles/pancakes, steak, french fries, crackers, chips, dinner rolls.  That was it.  Each individual person eats a lot more than these few items but these were the only things on everyone's list. I started there.  Chicken strip night, pizza night, steak night, breakfast night - four days of dinner options. 

Next, I started rounding those meals out.  I added a vegetable tray and fruit to every dinner.  There is always a veggie tray and some fruit on the table ALWAYS.  I also started making some substitutions to these meals.

For our chicken nuggets - I traded frozen chicken strips for trying some recipes for chicken strips using chicken breasts.  At first I would serve both the familiar and new but now I just serve the new chicken strips.  I found a recipe that we can all eat with varying levels of satisfaction and I make adjustments to it each week hoping that some day it will be about perfect.  The frozen french fries have been traded for home made fries & home made sweet potato fries (the kids are willing to eat one sweet potato fry each time I make them but they mostly eat the regular fries).  I borrowed an air fryer from a family member and cook this whole meal in it. 

Pizza night hasn't been adjusted much as we get it from a take n bake place.  We've switched to the thin crust and no longer get breadsticks or desserts.  Instead we have pizza, veggie tray, fruit, and a sugar free popsicle for dessert. 

Steak is like the chicken strips.  I keep trying variations of recipes looking for the best fit.  Everyone likes a seasoned steak from the grill so that is once a week now.  Since this one is easy it is usually the night we get more creative with vegetables.  We've tried sweet potato, acorn squash, steamed broccoli, steamed cauliflower, roasted carrots, roasted peppers & onions, corn, green beans, artichoke, and hummus.  None of those were big hits but we'll try them all again in a rotation until something sticks. 

I've also tried skillet and sheet pan cooking for steaks and with some teriyaki sauce we were able to add a meal.  Teriyaki steak (or chicken because everyone will eat either) with rice or noodles.  Again we try some veggies with this meal since the rest of the meal is pretty much working for everyone.  I've made the rice fried with onion, peas, and carrots.  N doesn't like fried rice because he doesn't like mixed foods.  We also tried zucchini with this without much success but I liked it.  Our whole family likes going out to a hibachi grill so I'm continuing to try recipes of this style.

Breakfast for dinner is hit or miss.  One child likes waffles and the other likes pancakes but neither is ideal.  I was hoping to use those to get more eggs introduced.  Both kids like bacon so that is easy for this meal.  I've adjusted the batter so it is a homemade with lower carbs than the mixes but otherwise this isn't my favorite meal to make and no one is really loving this for dinner.  As we find other things we'll probably take this out of rotation.

Crackers, chips, dinner rolls - that isn't really a meal and it isn't even the base for a meal.  Most of these things we are basically limiting.  Our teenager has access to chips but N is off chips and rolls for now.  He takes wheat thins in his lunch most days with meat and cheese for school so he gets his cracker fix.

What else have we tried: shepherd's pie, tacos, fajitas, pot roast, beef stew, chili, chicken casserole (several), pork chops and the list goes on.  The most difficult part for me is that there is so little that everyone will eat.  There is not a single meal I can put on the table and think "everyone will have some of everything on the table" NOPE.  But I can think "we all sit at the table" and "everyone has something on the table he/she will eat".  I can see that things will change if I keep at it.  My older son used to have a single bit of dinner then make himself peanut butter toast - now he just eats enough dinner to not need toast.  My younger son will try the main dishes for dinner but we are still allowing him the neutral alternate - wheat pita with cheese or pepperoni pita depending on how many times he has tried the main meal (first time we allow for the pizza since he never likes anything on a first try but once he has started to eat a dinner option we start fading out that pizza to pita with cheese and ultimately plan to fade the alternate entirely).  It is hard since we know he needs to eat and carbs are part of what he needs to have.  We know there are better carbs and not as great carbs but we just keep doing the best we can.

I'm looking forward to the day when I read back through these posts and realize that things are much different with foods.  Right now I'm tired of thinking about dinner and trying to figure out what to make. 

Morning Routines

I have always been the kind of person that could be ready to head out the door in about five minutes.  I don't wear make-up, I own only a few pairs of shoes, I wear jeans and t-shirts, I put my keys in the same place when I get home each day.  In the morning to get ready for work I need time to shower and throw on clothes then out the door I go.  Since I live only five minutes from my job I need to wak up about 20 minutes before I have to be at work.  Uhm, until now.

There is no "grab your keys and let's go" with type one diabetes (probably not with a lot chronic health conditions).  My morning routine since my son't diagnosis has changed.  Now I wake up and drink my coffee at home (saving myself lots of money since we don't do the coffee stand anymore).  I set the oven to preheat, start the coffee to brew, then hop in the shower.  After I'm dressed I put bacon into the oven and sip my coffee while I pack N's lunch for school.  I write down his formula and carb counts in his notebook and make sure his kit has all the necessary supplies.  The timer lets me know the bacon is ready and I go wake N up for school.  I do a glucose check then head back to the kitchen to calculate his insulin for breakfast while he gets dressed.  He usually eats the bacon while I finish getting his breakfast set up.  We get on our shoes and coats, he gets his insulin injection, then we hop in the car.

We arrive to school and get settled in my classroom then my timer lets me know he can eat his breakfast.  N likes to listen to stories read aloud (storyline online or books on tape/cd) while he eats breakfast.  I'm on the clock at this point so I'm doing my morning planning or I head off to meetings in the conference room.  About thirty minutes later N gets on a bus to go from my school to his.

Not a bad routine but it definitely took us a couple weeks to figure out what works best for us.  Thankfully my job was very forgiving.  The first couple days I was late.  N would have a morning low or he would want something for breakfast that took too long.  I was also trying to give him the insulin and have him eat at home before leaving but in order to arrive to work on time he would be eating too early leaving well over three hours between his breakfast and when he has lunch at school.  If he eats too early he is low before lunch.  If he tries to have a snack between breakfast and lunch then he isn't hungry at lunch and would be low at afternoon snack from not eating all his lunch.  We've tried this and tweaked that and finally gotten into our groove.  This routine is working for us as long as N wants cereal and fruit for breakfast.  Sometimes he wants waffles or scrambled eggs though.  Right now that doesn't work on a weekday so we save it for the weekend.

Maybe the morning routine doesn't change much for some families but for us, most of this was a change.  N used to go to a before school program where they would serve him breakfast and he would have time to play/visit with his friends.  I did speak with them about his diabetes and what the mornings would be like for him if he continued to go to their program but ultimately we decided it wouldn't work out.  The program has been great for both my kids but the daily supervision is from people in their early twenties.  There are a lot of kids from 1st - 5th grade and not a lot of staff.  There are rules that everyone must sit down and be served the breakfast.  Ugh it just wasn't going to be reasonable to expect them to adjust things for him and I would've been worried.  I figured out our new plan and was fortunate that my job allowed me to make the needed adjustments.

Thankfully, school is a whole different scenario.  N has a chronic health condition and is provided a health plan &/or a 504 or IEP to ensure that his needs are being met at school.  I met with the school nurse and his teacher before sending him back to school and we developed a health plan for him.  He is able to manage his diabetes with no repercussions.  He can have a snack, get drinks, keep his phone on him/with him, can have breaks from testing, and may see the nurse whenever he needs.  His teacher keeps no carb snacks in her mini-fridge that I send for him to have when he needs/wants.  If he asks to go to the nurse she always has a friend of his go with him to make sure he gets all the way there (sometimes when blood sugar is low a person can get confused or disoriented or even pass out).  I still worry about him at school.  If there is a substitute or if they are doing a lot of extra activity in PE or what might happen on the playground but those scenarios should be covered by the health plan.

I'm lucky I work for our school district and I have the flexibility of being a teacher who works the same hours that my son is in school.  I'm fortunate that N's elementary school has a full time nurse on staff and that his teacher was very open to learning about diabetes and making sure that his needs are part of her daily plan (especially when there are parties or special activities).

I get up one hour before I have to be at work now and I always make it on time.  I don't have to worry or feel anxious in the mornings because we have our routine figured out and it stays pretty consistent.  I do wish we could sleep in on the weekends but for now we keep to a pretty tight schedule in order to keep N's diabetes well managed.  He gets to sleep in about 30 minutes later on weekends but I get up at the same time.  My physician says I'll probably live longer because I keep the same hours all the time but he also says stress can take years off your life so maybe it's a wash:)

Still, I feel lucky that I'm in the job I am and that it is so close to my home and to N's school.

Hurry Up & Wait

It's been about six weeks since N was diagnosed with type 1 diabetes.  It is definitely a learning curve and making the proper adjustments takes time.  There is definitely a pattern I'm noticing though where we hurry a bunch and then have a long period of waiting.  HURRY UP...WAIT.

When he was in the Children's Hospital we were in the Hurry Up phase.  Hurry up and learn all the things so you can go home and be the best artificial pancreas you can be.  Hurry, hurry, hurry, learn, learn, learn.  Then we got home and it was WAIT WAIT WAIT.  Wait for 3 hours, check a glucose level, freak out (not everyone does this step), call the number, WAIT for someone to call you back.  Then HURRY UP and do the thing because you should have done it twenty minutes ago before you called.

Or WAIT, WAIT, WAIT three hours then check a level.  HURRY UP dinner needs to be done and on the table in fifteen minutes because we've already given the insulin and what do you mean we're out of grapes that is what we factored for fruit!

Or it is HURRY UP and send in your numbers to the team because they need to be in before 11 a.m. then WAIT for a response because you're sure something will be changed and yes it is changed, they want you to use a different ratio for lunch but lunch was twenty minutes ago.  Don't misunderstand, I LOVE the TEAM!  I don't know how long things have been this way but sending our numbers in and getting recommendations from our medical professionals is a gift and a blessing.  I don't know how they are making their adjustments to ratios and factors but however they are figuring those things out we are reaping all the benefit.  We are almost always within our target range and I have not made any decisions on my own about ratios and correction factors and how much long acting insulin my son needs.  This is a delicate thing and I am so thankful for the team who is keeping us at the right levels for my son to live his best life.  I'm just noticing that it is also part of the HURRY UP then WAIT pattern which may have a lot to do with my mental processing of this new situation; it may be my overwhelming desire to be in control.😉

We feel like we did a lot of WAIT in regards to a potential Continuous Glucose Monitor (CGM).  This device is worn for several days and sends glucose numbers to your device or iphone.  Depending on the device that is chosen you can have updated numbers every few minutes, use a program to track patterns, have the numbers sent to multiple devices.  These things are great and exciting and we knew we wanted one.  My T1D mom friend got one for her daughter and it was a game changer for how they were managing and how comfortable she was as a parent.  She could check numbers while her daughter was at a friends house or at school.  She could see patterns and make smart adjustments as she got more familiar.  She started to extend the time from when she gave insulin to when she gave food so that the two peaks would match up better keeping her daughter in range better.  We knew we wanted a CGM but WAIT WAIT WAIT our insurance doesn't cover these until 30 days after a diagnosis if you take good data in your book.  We took data (and would continue to do so even with the monitor) and we waited until we got to 30 days & we reached out to get the device.  HURRY UP they need a copy of this and a prescription from that.  So we hurried and got the right person with the right thing then WAIT again because from the time you ask for the device it can take 4-6 weeks to get all the right signatures and permissions and for the company to get the order and for the device to come to you.  No tracking number...we just have to WAIT. (but it is coming straight to our door so one day we'll come home to a nice surprise and then we'll be in the HURRY UP mode for a few hours probably).

I expect we'll find ourselves in a similar situation in a few months when we are ready for an insulin pump.  Right now we are in the WAIT period for that.  Our insurance requires that N have his diagnosis for six months before he can be considered for the insulin pump.  I get it.  We need to learn things the "old fashioned way".  Actually the way we are managing diabetes is relatively new.  Compared to even 20 years ago things are new.  Treating diabetes with insulin is new in the last hundred years and in the scheme of things that's not very long in medicine.  It's long for a human though.  We are learning to finger poke and check glucose, we are learning to look at that data for patterns and to make adjustments to keep those numbers in our target range, we are learning to dial up our insulin and give the injection, we are learning how N responds to all of these things.  We will need to be able to do these things proficiently even after we have a CGM and an insulin pump (if we get approved for those).  Technology doesn't always work, things break or accidentally get taken in a swimming pool or any number of scenarios and you have to use the "old fashioned way".  I'll be glad that we are proficient at the old fashioned way when we need it but I'll be glad to have the new innovative technology too.  I understand we have to WAIT and HURRY UP and WAIT some more.  There is a difference between understanding and being at peace with your knowledge though.  I'm anxious to keep making the best decisions for our son and it may not be as dire as we perceive it to be but we want to ensure our choices are giving him all the opportunities in life.  Good diabetes management is what we can aim for and advancing technology can help considerably.

It isn't easy to wait and in our age of instant gratification it is reminding us that we have patience and that things happen in their own way and their own time.  It isn't easy to hurry when you are tired and worn down and there are no vacations from diabetes management.  You can't just take a day off or sleep in on Sunday morning.  We're doing okay with it all.  N is thriving right now especially when we look back with our new 20/20 hindsight at how he was feeling in the weeks and month before his diagnosis.  HURRY UP...WAIT  of course we will continue to do both to the best of our ability for as long as it needs doing.  Thankfully we have a great team and strong supports and loving friends and family.

Our First Class Party

We didn't get much time to get accustomed to diabetes management before we had to face one of a T1D mom's worst days - classroom party day.  My son went back to school for five days before winter break.  Just in time for all the hot chocolate, sugar cookie making, handing out candy canes, and xmas class parties.  I seriously thought about keeping him home from school that last day before break because I had NO IDEA WHAT I WAS DOING with the diabetes management and his class was having a party where parents were providing: hot chocolate, cookies, brownies, cupcakes, candy, sugar cookies with a decorating station and a movie.

I met with the teacher and the nurse about a week before the party because we were establishing his health plan for school.  What to do for parties was part of the plan we developed.  The school nurse told me that there are usually three ways kids with T1D handled class parties:

1. they were opted out (parent would keep them home or they would go to a buddy class that wasn't having a party)
2. parents send in alternate "treats" that are diabetes friendly
3. child participates in the party and covers the carbs with an extra insulin injection  (calculates carbs and covers before the party or calculates and covers after eating the treats)

Since we'd been home from the hospital for only two days when I met with the school; I had no clue what to choose.  I wasn't going to opt him out because that seemed like it was only in my best interest.  I didn't believe I would be any good at baking alternate treats that would be friendly but figured I could try some recipes while he was at school and if they worked out then great.  So we decided he would just be a part of the party.  We'd been told that dosing fifteen minutes before eating was the best for N's management but it was going to be a challenge since it was parents providing the treats and we wouldn't know what was available until just before the party.  I talked it over with N and he understood that he should make a few choices at the party of things he REALLY REALLY WANTED instead of having some of everything.  The day of the party came and the nurse and I had come up with a list of carb counts for common treats.  N was going to choose his items then go get his insulin for those then return to the party and have the treats.  We were ready!

That's not how it went though.  At the party, parent volunteers were in charge of the treats.  They walked around to each student and offered them a cupcake/cookie/brownie/candy and then they put it on their plate.  N had to wait for six different parents to come around 1 at a time before he got the three items he wanted.  Then he went to the nurse.  There was a sick child in the nurses office so he waited.  Then he went in and one of the things he had picked was a brownie with frosting but it was definitely bigger than 1inch square which is how the carbs are factored so they decided together what they estimated the brownie would be.  The cookie had sprinkles and stuff, so again, an estimate.  He got his insulin and waited ten minutes then went back to the party.  Once he was back at he party he ate a cookie and then a parent volunteer told him it was time to put any snack he hadn't eaten into a plastic bag and put it in his backpack to take home; so he put his other two items away.  So he had insulin for three treats of carbs but only ate one.  He wasn't ready/able to advocate for his diabetes and couldn't try to explain to an unfamiliar adult that there could be serious consequences for him not eating these treats.  About half an hour later he felt sick and went to the nurse with low blood sugar (no surprise - he hadn't eaten 2/3 of the carbs he dosed for).  The nurse didn't know he hadn't been given time/opportunity to eat the treats so she was concerned that his blood sugar was so low.  She gave him a 15g juice and glucose tabs to bring him back up.  He then had to stay in the nurses office until she could check him again after fifteen minutes.  She wondered if he'd be able to ride the bus because she couldn't figure why he was low after eating so many carbs.

My poor kid.  He didn't enjoy the party much.  He didn't really get to eat the treats.  He had a scary low blood sugar that made him shaky and sick.  He had to sit in the nurses office for 30 minutes drinking juice and eating sugar tabs and rechecking his sugars every fifteen minutes worrying that he would be too low to ride the bus home.  When he got off the bus I asked how his day went and how the party was and he said it wasn't very good then he told me the whole story.  I felt terrible.  It hadn't worked out well for him at all and he hadn't had fun only extra worry and stress and nerves.  

We made a plan that next time he could eat what he wanted at the party then go to the nurse and tell her what he had to get insulin.  His blood sugar will spike with this plan and the insulin will come in later than we'd like to cover those carbs but the stress and fear will be removed from what should be an average childhood experience.  Valentine's Day is right around the corner so we'll get to try the whole stressful situation again in just a few weeks.  

First Month - UGH! THE NUMBERS!

We're past our first month now.  N was diagnosed in the wee hours of the morning on December 9th.  In some ways nothing has really changed and yet so much has changed.  We came home with our Pink Panther book and our new information and tried to create a new normalcy in our lives but some old information does get in the way.

When we were at Children's Hospital with our new diagnosis trying to soak in all the information we would need to take the best care of N, we were filled with the lessons we were learning and our thirty-forty years of life and stories and backstories of what we had known of diabetes.  I have a colleague that has type one diabetes but we never really talked about it.  In my twenties I was married to a man with type one diabetes and I remember he had rules he was following and little vials of insulin lived in our butter drawer in the fridge but I was young and he was guarded so I never learned much about it.

We were assured that our son can do anything he did before and he can eat anything he wants.  They tell you that, and maybe they really truly mean it, but it is difficult when there is a number attached to those food choices.  Higher carbs equals a higher number to dial on that insulin pen and as a parent I can't help but feeling sometimes that the number reflects my modeling of less than stellar meal planning and diet.  Before diabetes we were a family that liked fast food and take out.  We ate hamburgers and french fries.  When I felt like the family could use some bonding time I often used food to bring us together by baking cookies or making brownies or taking us all out for ice cream.  My kids grazed all day, open kitchen.  We usually ate dinner together but often I made multiple mini-meals catering to each person's preferences (not surprisingly I did not love cooking).

Our first few weeks after diagnosis I found myself thinking "he can't eat that, look at all those carbs."  When I'd dial more than five units of insulin into his pen I'd think "we can't do this meal again."  I'd heard our team of experts talking about food and how to not create eating and food issues for our children with T1D but it was hard to keep it in my head.  We like a popular take n bake pizza place.  We looked up the carbs and decided a splurge would be good for him to feel like not everything was changing.  Before diagnosis he was a picky eater who grazed all day long and now we were having him on a regular meal schedule and scheduled snack times.  I had found his appetite was different maybe because of the schedule but probably because the insulin we were giving was allowing his body to use his food the way it should.  We figured he'd eat two slices of pizza, he usually just ate one.  That night he ate four slices of pizza plus his fruit (no veggies).  Double the carbs we had covered for!  When he reached for that third slice I was panicking inside "do I tell him no? do we have to give him more insulin? what should I do?"  My hubby told me I handled it fine and N never realized I was worrying.  After he doubled his meal we did decide he had to have additional insulin because each slice of that pizza was 25g of carbs and we'd covered for 50 when we needed to cover 100!!!  That number and those insulin doses caused me stress and uncertainty.

My coworker's daughter was diagnosed T1 a year and a half before our son.  She struggled with it at first but over time it has become a part of her everyday life and she seems to be handling it all so well.  I'm so fortunate that she has traveled this road ahead of me as she is now a great resource and a great comfort when I'm uncertain and confused.  I'm definitely not afraid to cry in front of her.  After I'd been home for a few weeks she came over and we shared some of our stories.  Not surprisingly, our reaction to the diagnosis of each of our children was filtered through our previous experiences and what we had known before and what we were learning now.  I told her about the pizza and she laughed.  Her family likes pizza too.  Her daughter likes chocolate muffins and chocolate milk.  Both our kids like treats and gummy fruit and things that have higher carbs.

As the days and weeks have gone by I am happy to say that I'm getting more comfortable with our numbers and my role in providing N with nutritious options.  We are still a family that likes hamburgers and fries, pizza, and take out but we try to make smart substitutions when we can.  We were given targets for the number of carbs N should have at each of his meal and snack times and we try to stay in those ranges without presenting entire meals he won't touch.  We substitute thin crust pizza from our favorite place instead of the regular crust and he still eats four slices but with the thinner crust it is a lower carb (still our highest carb meal each week though).

I'm also changing the way we approach our main meal.  No longer am I the short order cook of the family.  I make a meal and try to ensure there is one food that each person will eat as part of that.  Thankfully my teenager's tastes have really branched out over the years and he is willing to give just about anything a try.  As for N, he prefers known foods and for his foods to be pure/separate.  He doesn't like casseroles or mixed foods.  We put a veggie tray, salad, or vegetable on the table for every meal but, under our care team's advice, we don't force anyone to eat anything.  We just make sure healthy options are being served and people are modeling eating them.  Tonight we are about to have burgers, fries, acorn squash, veggie tray, and lemonade for dinner.  I can't say I've started LOVING cooking but I am starting to gain confidence in dinner and I can see that I may even start enjoying cooking in the future.  Hubby and I are now creating dinner together which offers more visiting and bonding for us too.  There are definitely perks.

Those numbers are still always on my mind. I still worry about the numbers and if we are doing the right things.  I worry that 40g of carbs from a burger is not the same as 40g of carbs from fruits and veggies.  No one in my family seems to like any veggies (including me).  We keep serving up healthy foods, the adults keep eating the healthy foods (even when we'd rather have cake), and we keep making small yet sustainable changes from white to wheat, from thick to thin, from fried to baked.

I'm hopeful that by the time N is an adult he will have some healthier habits with his eating.  I'm noticing a lot of joy at our dinner table and it is nice to have ten minutes of family bonding time.

I'm not kidding, it takes 30-60 minutes to make food and they sit at that table for about ten minutes.

Things are different now but not so very different.  There are some positives if I pay attention to them.  We can do this!