A day in the life!

So what are you doing with your summer vacation?  This seems like a silly question to me, right now, with a global pandemic, and from someone who lives nearby and visits with me regularly.  You know perfectly well what I'm doing...nothing.  So what does nothing look like for a teacher and mom of a son with type 1 diabetes?

4:30 a.m. My son's cat scratches at the bedroom door.  He is an indoor/outdoor cat but we don't let him out at night because he is the WORST FIGHTER EVER!  He has been to the vet so many times for scratches and bites that have gotten infected.  The vet is pretty sure that he likes to test his strength against raccoons and hasn't yet learned that he can't win.  So he has to stay inside form dusk til dawn but at the crack of dawn he starts moaning about trying to get me to open the cat "freedom" doors.  I always give in too because if I don't just get up and open the door he will sit in N's bedroom and bawl.  I then go back to bed.

6:30 a.m. My other son's dog stands outside my bedroom and shakes and shakes his head to make his collar rattle so I will know he needs to go out.  Ugh!!! I got these animals on purpose.  He can't have a dog door because the cat would use it to go outside and brawl so he is stuck inside overnight too and by this time he has to pee.  He is 12 years old so I take pity on him and let him out.  I try to let him out the back door without letting my cat out of my bedroom.  If she makes it out of my bedroom she will get lonely in about 30 minutes and start singing in the kids' hallway but if she stays in my room she will get back in bed with me.  I go back to bed but 9/10 I cannot get back to sleep.

7:20ish a.m.  I give up.  I'm wide awake.  I get up, let the cat out, let the dog out again, and make coffee. Now this is the golden time in my day.  All the other humans in my house are asleep  No one needs anything!  I can sip my coffee and enjoy my solitude.  This is when I can get things done too because there are no interruptions but I can't do anything that would wake the others.  Most days this is sipping coffee, scrolling through facebook, and completing any online professional development work I am doing.  This summer I'm also on a couple of school district planning teams so this is when I work on those tasks too. 

8:30is a.m N wakes up.  BG check, insulin injection, and make his breakfast.  He likes his morning to be spent in his room so he gets his T1D stuff out of the way then heads back to his room to play on his computer or watch netflix and waits for me to bring his breakfast.  We've come to some trial & error timings that work for us and we've found that if he wakes up in range he should get his breakfast 25 minutes after his insulin.  If he wakes at the higher end or above his range he gets his breakfast 45 minutes after insulin.  He eats cereal and bacon every morning (if I don't force him to try something else) so we know what works for this breakfast most of the time. 

9:15 a.m. Breakfast is delivered and no one else will be awake for a while so out to the garage I go to walk on the treadmill for 30 minutes.  Here is what I know about me and exercise...we aren't really compatible.  I give myself full permission to refuse the treadmill any day I want but I have to go out and turn it on and walk on it for 1 minute before I can choose I don't want to do it.  Most days that means I go ahead and walk for 30 minutes.  About once a week I just do the 1 minute. 

10:00-Lunch This time is continuing with work meetings, professional development, setting activities for the student who is still doing online work, or my own personal projects like painting or sewing masks or reading a book.  I'm into the sewing right now so that wins most days.  I have watched some painting tutorials but haven't done a new painting this summer yet.  It feels like I don't really feel like it is summer because I don't know what the plan for fall is going to be.  I'm hoping that after our superintendent gives us the plan I will be able to relax for a couple of weeks before I start back into it. 

After lunch there is a long stretch when there will not be a need for insulin so this is when I might visit my dad/sister at their house or I will go for a walk in the park with my mom.  If I don't get out of the house then this time is spent procrastinating household chores while binge watching netflix.  Sometimes I do laundry or make masks to feel productive.  Today I researched if I want an embroidery machine or not while watching the Mysteries of the Abandoned marathon. 

4:00ish is when I start making dinner.  A thankless dinner that will take between 20-60 minutes to create so that the two humans I built can spend 6 minutes eating it and about that same amount of time telling me they don't really like X,Y, or Z about it.  I don't enjoy cooking.  I've written about this before and I'll write about it again but it isn't getting any more enjoyable for me.  I don't mind the parts of cooking.  Chopping onions, slicing bread, putting rice in the cooker, stirring sauces.  I don't mind any of that but the sum total of making a meal is a loss for me. 

Dinner is between 5 & 6 and comes with insulin and timing issues.  We were eating at the table every night before Covid19 shut us down but now we don't seem to make it to the table more than a couple times a week.  Everyone is so involved in their activities and their schedules are all wonky from being home since mid-March.  Also, there is some sorrow in following our dinner routine since we aren't able to engage in a lot of our other routines of the summer.  Usually we would be discussing our upcoming vacation plans or reliving our recent vacation.  We'd talk about the friends we'd seen or who we had spent time with and what we were planning for tomorrow.  It isn't very interesting to talk about staying home and how we will be doing more of that.  We don't even talk ahead about fall so conversation can be kind of stunted.  The boys are all building a new gaming computer together so lately that has been the conversation but once it is done who knows.

Evening    After dinner is the first time R and I really spend any time together.  He is a very outgoing and busy guy and he can't sit in the house like the rest of us.  He isn't content to play video games all day or watch TV.  He needs to expend some energy so he spends most of the day working outside in the yard, visiting his mom, walking in parks, pokemon hunting in his truck, or running errands.  Now he and I have a couple hours before bedtime to hang out together and we spend it trying to find something that we both want on TV but this is futile.  We should get back to playing cribbage, which we used to do every evening.  I'm going to get out the cribbage board tonight...I've decided. 

8:00    Snack time for N with insulin to get his BG to about 150 so he can go to bed.  He finishes his snack and he and R read a chapter book together.  M grew out of wanting to read with me when he started middle school and N is starting middle school in the fall so I'm not sure how much more time we're going to have for this routine but we are enjoying it while it lasts.  

9:30    N and I are both in bed.  R & M stay up later.  R comes to bed by 11 usually and I hear M do his nightly bedtime routine at about 1 a.m.  

11:30     I naturally wake up at about this time after months of T1D.  N's BG comes down at this time of night from his snack and it can drop by quite a bit so I just peek then am back to sleep (most of the time).  If he doesn't drop below his range between 11:30 & 12 he probably will stay steady through the night.  Before the Dexcom, we were checking BG at 3 a.m. and found him low quite a lot.  Since we've gotten the Dexcom and refined our practice we've found that if he never goes low at 3 a.m.  He goes low between 11:30 & 12 or not at all.  Pretty much.  Who knew.

Not thrilling but this is what we do.  It's funny reading it.  I feel so stressed and worried so much of the time right now that when I read back through this I'm wondering how I spend all my time.  It isn't wasted because I'm using it but it sure doesn't look like I'm using it for productivity.  Ah well.

2020 School Year End

Today is the last day of the 2019-2020 school year. 😏

This year has been quite the adventure.  We got my son's type 1 diabetes diagnosis in December.  My school was closed for snow then when we got back we had a water pipe break and flood part of the school over a weekend and we were closed again.  On March 13th our schools closed due to Covid19 and we've been "distance" teaching and learning at my house.  In the midst of this the black lives matter movement grew exponentially with protests and rallies.

Many years ago, I read a research report on the effects of watching the news in the United States.  I don't remember how I came across it, probably sipping coffee in my pjs while my family slept in.  I often go down a click-road and am often surprised at where I end up.  The research showed that the amount of news watching a person did was directly correlated with the level of unhappiness for that person.  What?  Yes, people who watch the news are unhappy!  Maybe people who don't watch the news are happier because they are oblivious but I know watching the news doesn't bring me joy so I often don't do it.  I rely on my friends and relatives to just give me the important and big events condensed and without the sensationalism.  So then along comes a global pandemic and I'm home all day every day...

I'm not watching the news but I am reading it.  I scroll through the internet in the mornings and peruse the main news topics.  What a bunch of jumbled mess.  I guess I've come to the time in my life when I will now say "back in my day".  I admit I never gave much though to the news and it's legitimacy when I was young but I fantasize that at one time our news was reporting facts.  It probably still is but it is difficult to tell right now.  It seems to be that "news" is just a blatant attempt to out-shock the competition.  This morning in my "news feed" there were four articles back to back that each contradicted the other.  Chasing down my own information was difficult and when I finally was able to find a source I felt confident was providing some research-based information it didn't seem to support any of  the sensational articles I had just read.  I have the time, ability, and desire to chase down a source but many people don't.  I'm guessing they only read the article with a title that matches their opinion or if they read multiple articles they would lean towards their existing opinion because there is no compelling reason given not to.  

I'm digressing...

The school year is over.  For me, and several of my students, next week is going to feel exactly like the previous three months.  I will sip my coffee while my family sleeps, review student's responses from the previous assignment, set a new learning target or make an adjustment to the lessons, and create their assignments for the day or week.  These students will follow the routine their families have set for them and I expect to see each student submitting work pretty much in keeping with the time they have been submitting work for the past three months.  I will still be joining zoom meetings with select groups of colleagues as we try to plan for re-opening in the Fall without much in the way of guidelines or accountability from those who set the guidelines.  

But mostly, I'll have my days to enjoy the sun and my family and sit on my porch with my book and glass of wine or a lemonade. My mind may try to race from the sensational news to the uncertainty about the coming school year.  I will review my social media and try to skim over everyone's personal opinions on masks vs. no masks to enjoy pictures of friends and family.  Time marches on and it will this summer too.  My plans have changed since R & I were planning a wedding ceremony for July but we've cancelled/postponed it.  We feel married already anyway and whenever we have the ceremony we want our people to feel safe to attend.   

Covid19...Staying Home

Well, we've been home for 10 days now and counting.  I'm thankful hubby and I are both teachers so we are currently working from home during the week and are able to be home with our kids and not having to worry too much about the financial implications so many others are facing.  We have our home, plenty of items in the pantry, and an exorbitant amount of home entertainment.

So what are we doing?

N and M have been keeping busy on their computers; mostly keeping to their rooms.  Since they were already connected with their friends digitally the only difference for them this week was that they didn't go to school.  They are staying pretty entertained with online gaming and social media.  Since I work in the school district where the kids go to school, I knew where we weren't in the process of figuring out how to provide for kids with school campuses closed.  It made it easy to decide that we'd give ourselves this first week as spring break.  I didn't put a schedule into place or stress about the "missed" educational opportunity.  We just took the week as a break with the kids taking the lead on how to entertain themselves.  I figure as they satiate themselves on their leisure activities we can start adding in academics and make a more formal schedule.  We have implemented a new physical education program though - we got a virtual reality gaming headset and we each spend at least 30 minutes on it playing games that require physical exertion.  The sweatiest game is the one where you use your swords to bash these blocks in time to music; love it!

During the week I participated in my first ever Zoom meeting with the special education staff.  This was a great practice run for me since this is likely how I'll be doing my IEP and evaluation meetings for the next few weeks.  We had a good discussion about how best to support our families of students with complex special needs during the school closure.  Not sure what the ultimate resolution is going to be but we were able to put together some resources and start reaching out to community programs that may help.  I had originally thought we might try to work directly with our students outside or in smaller groups on campus but after watching the news for the past week I guess that was just naive thinking.

Hubby & I decided to go ahead and start on the "summer project list" that we had going.  I'm staining the kitchen cabinets from an orange 80s oak to a darker mahogany.  I love the way it is turning out but it is a LOT of work.  Hubby spent time at his rental property as his renters moved out at the end of the month.  He did some minor fixes in the house, cleaned up the yard, and installed a new fence.

Today Hubby is in our backyard taking down one side of our dilapidated fencing and putting in new.  The recent windstorm was pushing our fence over so it's good we have time to get it back in shape so our beagle can have freedom in the yard.  I was up a lot over the past three nights so I took it easy today; just installed some new shelves in the kitchen for cookbooks and knick-knacks.  I'll be back to staining cabinets tomorrow.

So what does staying home/distancing mean for our son with T1D...not too much.  I'm feeling really grateful that he got his dexcom G6 supplies right before this all started.  We've had his first sensor on for about 8 days now and we're finding it to be a blessing in a cursed fashion (those nighttime alarms are a beast).  Since he isn't attending school this week we weren't sure how his body would respond.  He consumes more carbs on the weekends usually than during the week so I figured he'd be running higher on the blood sugars but he has been more active at home than he is at school so he's actually been running on the low side.

The past three nights the dex alarm has gone off warning of low blood sugar and downward trends.  Of course this falls on a weekend when I don't usually hear back from our team when I send in numbers and I'm not confident in making too many adjustments myself.  I re-read the chapter in my pink panther book on thinking scales and dosing though and tonight we're going to lower his long-acting insulin.  Hopefully that allows us to get some sleep.  Last night that alarm went off 3 times and he ended up having 45 carbs with no cover to make it through the night in a safe range.  WOW!  Good thing we have the CGM or I would be awake all night checking on him.  We'll send in numbers Monday morning and will likely hear back on what to do within a few hours.  I'm exhausted though from being awake although I'm thankful we have the dexcom so I can sleep knowing that if he goes low it will alarm and wake me up...which it did...over and over again.  I'm blaming the new VR gaming system.  He has been playing those active games for about an hour in the morning and an hour in the evening after dinner.

Overall our first week on distancing and staying home has gone well.  We're in the middle of several projects to keep us busy.  The kids are happy enough and not too bored yet.  Time will tell but I'm sure eventually we will begin to feel a little stir crazy.  I don't have a high social need so this is pretty nice for me but Hubby likes to spend time out socializing and he will likely get tired of being couped up at home.  M is more like me, he likes to be at home with his things and he can spend as much time as he wants visiting with his friends online.  N likes to see his friends and do active things so this may end up being harder for him.  Time will tell.

Getting Used to CGM

We're up and running with our Dexcom G6 and we love it; especially N who is the one wearing it and getting a reprieve from all the finger poking.  He was very nervous to do the initial insertion but it went smoothly and he said he barely felt a thing which was a relief for both of us.

We started his first Dexcom cycle on Saturday right after breakfast and we have only done a finger poke check 1 time.  It's funny how you become comfortable with the old and familiar though.  I've wanted to confirm his readings a million times since Saturday but I'm resisting the urge.  We are getting good, reliable readings and he shouldn't have to poke his finger just because I now know we aren't managing things quite as well as we thought.

Things we like:

• easy to insert with little pain and easy to follow directions
• readings are excellent, update every five minutes
• device can be set for a high and a low alarm in addition to the non-optional critical alerts
• can be read on the sensor or a phone app 
• turns out my son doesn't have a supported model of phone so we'll be upgrading soon
• once he has the right phone his numbers can be shared to my phone so I'll get alarms too
• downloading to a computer is easy and the information is presented well, easy to read, and is already making a difference in how we manage
• you can add information like when/how much insulin you give, carbs, exercise etc
• this is a plus but I keep forgetting to do it - I'm so used to writing in the book that it has become automatic but inputting into the sensor isn't happening consistently yet

Things we aren't loving:

• alarms - These are a plus for me but they are a challenge for N.  He has mostly been relying on the adults to manage his numbers and make sure he stays in range.  We may insist he have extra water or ask that he take a break from the computer and get some physical time and he is always very easy going about it but he hasn't really been paying attention to why we make these requests.  With the alarms he is the one who gets the alarm and reads the message.  He then comes to me to figure out what we should do.  Again, this is a plus because I am able to discuss what is happening, why, and what to do but for him the first few days has been more stressful.
• Stickiness - he has been wearing his dexcom for three full days with light activity.  We are on social isolation due to covid-19 so he isn't going to school and we aren't really leaving our house.  The sticky tape holding his device in place started peeling up on day two and it is supposed to keep the device in place for 10 days.  Thankfully we have amazon delivery and we've just received some over-patches to try to keep it in place for the duration.  We'll see how they do.

Now for the reason we got the dexcom in the first place; it is supposed to help us do a better job of staying in his range.  Turns out when you have more data/information, you realize you weren't managing things as well as you'd thought.  When we were only taking data every three hours, before a meal, (and of course the middle of the night data) we were seeing that most of the time he was in range.  We were feeling pretty confident.  That's probably why they don't want you to start of on a CGM because the learning curve would feel much steeper.  Now that we have the Dex we see that we are spiking after meals, sometimes into the 300+ range!  He also hangs out in the mid 200 range for about 2.5 hours at dinner and comes back into range just before the 3 hour mark.  So we used to think we were doing well at our dinner management but hmmm not so awesome.

The positive to all of this is that knowing is helping us to make adjustments.  We've pushed his wait between insulin and eating to 20 minutes and that made a noticeable difference in the severity of the spike in numbers.  The first day we just did our normal thing and didn't worry about things.  Day two we started paying attention and thinking about adjustments.  Yesterday we made adjustments to the wait between insulin and eating and also some changes to the bedtime snack options.  Today I looked at all those graphs on my computer and see the benefit of the changes and where we need to keep adjusting. 

It is a whole new game having the continuous glucose monitor.  Turns out I've gotten a benefit from the corona virus, we are home and able to spend time figuring this new information out and how to manage better with some time on our hands.  There's that unexpected good in an otherwise unfavorable situation.

Unexpected Good

My friend at work has a daughter with diabetes.  She was diagnosed a year and half before my son at about the same age he is now.  I wish my friend didn't have to be a T1D Mom and I wish her daughter didn't have T1D just like I wish my son and I weren't doing this.  But...

I try to find the good.  I try to celebrate small successes and appreciate what I have.  Where I live, how I've lived and live, the fortunate life I have, my family, my house, the comforts I have.  I try to find the good.  I think most people do.  I think we humans may be predisposed to both complain and make the most of.

I was reading other blogs and looking at recipes and finding resources when I came across a survey question.  I wish I could figure out where it was and direct others there but no matter.  The question was something to the effect of: since you now have a child with type 1 diabetes, have you found any unexpected good/positive?

YES, YES, YES

If you choose to look for the good you will find it.  Maybe you won't find it in every moment and maybe there will be vast amounts of time when it is too difficult to look for the good but ultimately I think it is there.

Unexpected good:

1. There are more kisses, hugs, and cuddles with my ten year old now.  He and I talked about this because he had almost "outgrown" most physical affection (yuck mom) but now that he has diabetes he feels like it is okay for him to accept and enjoy extra "love".  He said "other kids won't think its weird because I have to have shots and they will think I need hugs for that."  :)

2. We are appreciative of our family time and the simple acts of being a family.  This is probably related to the hospital visit and fear and will fade again over time but right now we are all feeling the joy of family (even my teenager).

3. I'm a terrible cook but my kids are trying to tell me something I did right at each meal.  I suspect hubby had a chat with them about it but I don't care, I'm happy to have any positive feedback.

4. I have given myself permission to leave more of my work at work and to focus my home time on being home.  I'm a teacher so bringing work home is pretty common but I am taking less home time for work right now and focusing more of my attention on being in the moments of each day including focusing on home while I am at home.

5.  When we opened up to friends and family about our son's new diagnosis we found out that we have lots of friends with type 1 diabetes.  Apparently it isn't something you brag about or talk much about unless you find out someone else can truly understand and then you are immediately bonded in a new way.

I'm hoping to come back to this post over time and add to this list but hubby asked if I would watch TV with him and so here I go to focus my time and attention on the family that wants to spend time with me right now.  Good.