Wednesday, September 30, 2015

Back to Basics.

One year and one month and a few days and hours later.....

I took a break from the blog to be human and procrastinate and also to work on a lil something (details later) but NOW!  Now we are back and up and running.  From now on, this blog will be more diabetes focused; I'm learning there is a bigger need in our type 1 community.

Whether I like it or not there are more and more of us every day.  I've met, texted, emailed, and talked with a lot of newly diagnosed families lately.  I hate that we are connected by the diabetes monster but we are, so: nice to meet you and I'm glad we're friends!

Your friends and family members have sent me your information, phone numbers, email addresses, etc and I haven't gotten a chance to get into contact with a lot of you so I'm starting to write here again in hopes that we can connect better.

Something I like to tell most parents of kids newly diagnosed with type 1 is that other people really just don't get it.  Even your closest of close of your friends, and a lot of times even your family members, will never be able to fully be on your level.  Not because of any fault of theirs, but because they don't eat, sleep, breathe, and bleed with you and your kids every day.  That is 100% normal and fine and you need to know that so you don't go getting your feelings hurt when your best friend forgets that your kid can't eat a graham cracker at 1:30 in the afternoon because it will throw off your day.  So, just decide now that you are going to be an adult and give grace and all that good stuff.

For me, I would say our school nurse, my parents and my in-laws and my fellow type one parents are the closest to myself and my husband in the department of "getting it".  My husband has a younger brother who was diagnosed at 17 so he's mostly on our same wavelength, but he hasn't experienced diabetes as a child or as a parent (hopefully he never will!) so even he can't TOTALLY relate.

I always forget what a lonely place chronic conditions can be until I talk to an outsider and they ask questions and are shocked by the answers:

-Do you have to check her blood sugar EVERY day?
-So she just eats gluten free or something right?
-When will she grow out of it?
-How many times a month do you give her insulin?
-And so on and so on and fill in the blank with whatever seemingly ridiculous things people have said to you...

It's almost like I think that since I am immersed and drowning in diabetes education, that everyone else will be as well.  We can't fault anyone for asking questions.  If anything, I think the fact that people ask questions at all should tell us that they care and are somewhat interested in what's going on in our lives.  Also, lets be clear: I tell them!  I tell them more than they probably want to know, but the question deserves a thorough answer and its almost therapeutic to spill your guts about what all goes on in your house between the hours of 6:30 and 7:30 am.  

I used to be the asker.  I used to be clueless about diabetes!  I've written about it before; when I first met my brother-in-law I gave him a hard time for wearing a pager at the pool... pager turned out to be his insulin pump and I felt like a big dummy.  He of course was gracious about it and laughed and didn't call me an idiot; at least not to my face. All that to say, no one else will ever understand your day to day, until they have lived it.

I get so many questions from newly diagnosed families about our daily schedule, how we operate, how we travel, what a school day looks like, and what we eat; so for today it's all about the schedule.

I am a schedule person.  I like to have times and places for all things and I prefer to be early for most occasions.  My schedule love evolved from my struggles in school.  Once I learned that I function best when I can predict and plan on when things are going to happen, I was able to actually study and do well in school.  Unfortunately, I didn't figure that out until I was a senior in college, but if nothing else, it prepared me to be a somewhat fully functioning adult when I graduated.

When diabetes came to live at our house, my love for order really helped us out.  All eating "moments" happened at the same time every day; as did play and sleep.  There is no grazing or random snacking going on.  Because we were on such a strict schedule going into type 1, I was able to predict Bug's highs and lows.  Knowing what to feed her and at what times quickly became second nature.  She was 9 months old at diagnosis and to this day (she is now 7) we still follow the same schedule for the most part.  Aside from naps and what she is eating, not much has changed.

So for those of you struggling with how to plan the day; here is how our day looks:

Our blood sugar goals are for her to be between 80--175.  Below 80 is low, and above 175 usually gets a correction.  Both can be evaluated on their own depending on circumstances. (if she is 80 and about to eat a big meal: no rescue (juice), and if she's 175 and about to go play outside and had cheese and a handful of nuts for snack then I don't correct.... this is where the "guessing game" comes into play; more on that on a later date)

*these are school days, weekends are not terribly different except that breakfast happens later

6:45am-- Check blood sugar. Breakfast. Around 25-30 carbs, try to get protein in there to keep her full all the way to morning snack

**** she usually needs to check some time around 9/9:30 because she is starting to get hungry and is afraid she is low.  Most times she is fine and just feeling hungry... this has been a big struggle for us since she started school but has gotten better every year****

10:00am-- Check blood sugar. Snack.  Around 15-20 carbs.  Give insulin only if she is running high and needs a "correction".  Give juice or "rescue carb" if she is low.
12:00pm-- Check blood sugar.  Lunch. Around 45-50 carbs. Give insulin to cover what she had for lunch and add a "correction" if her sugar was high going into lunch.
3:30pm-- Check blood sugar.  Snack.  Same protocol as morning snack. (I go a tad heavier on afternoon snack if we are going to soccer practice or dance that day and she had a low or normal blood sugar)
6:00pm-- Check blood sugar.  Dinner.  Same protocol as lunch.  SOMETIMES there is dessert... Actually, let's be honest, this is my child.... MOST TIMES there is dessert: we try to hover around 15-20 carbs for dessert.
10:00pm-- Check blood sugar.  Correct if high. Rescue if low.
2:00am-- Check blood sugar.  Correct if high.  Rescue if low.

***some times we check her later if we have stayed up later, so if she has a good sugar at 11:30 or so, I skip the 2am.  Inevitably I wake up the mornings after skipping the 2am check in a panic that she won't wake up... so it's usually a bitter sweet decision***

Bug wears a pump and we change the pump site every three or four days which is another drama in itself.. separate post entirely.  We do not have a continuous glucose monitor (CGM) yet because I hate change and can't bear the thought of adding something new and having two different sites on her tiny body.  I know they are wonderful and game changing so I'm working through it.

That's pretty much it.  Your schedule probably looks a bit different which of course is great.  I think my biggest motto (aside from "your look is 99.9% confidence") is that you need to find what works for you and your family and run with it.

Don't expect anyone else to completely understand what's going on behind closed doors and definitely don't apologize for being preoccupied with your child's health care.  There is a whole part of our brain that we used to use for things like our friends' birthdays and random acts of kindness... that part of our brain is now full of carb counting and constant worry.  We can always send the gifts late and there is plenty of time when our kids are grown for us to be randomly kind to people; dont' sweat it.