Tuesday, January 28, 2014

Meet 1 of the 40

These are the posts I hate writing.  

It means another family is hurting.  Another baby doesn't understand what is happening. Another mom is spending her days crying and her nights not sleeping.  

It opens the scabs of wounds that will never really heal, and makes me remember things I'd rather forget.

But I'm also glad I CAN write these posts.  That connections will be made.  A whole community will show up and welcome a new member.

And that a family can find hope.  A baby will grow and thrive.  And a Mom will realize that she can do this, and it's going to be okay.

And it helps me to remember just how far I have come since those first days.

DOC, meet Alyson and her precious little guy, Carter.  He was diagnosed back in November at 17 months.  Please go show her the awesomeness that is the people of the DOC. 

Tuesday, January 21, 2014

Letting go and moving forward

I was looking through the draft folder for my blog and stumbled upon this piece.  It was written when I was pregnant with Lucas and Elise was still in pre-school.  Not sure why I never published it, so today, I thought I would.

The mother kneels down on one knee and rests her forehead against her daughter's. Clasping the little girl's face in her hands, she wishes her a good day, and tells her to have fun. An admonishment of "be good!" is not needed for this child.  Kisses are exchanged and the little girl runs into her classroom; the all-too-familiar burgundy and black bag slung over her shoulder.  There is no final glance back at her mother as she has already spied her friends and envelopes them in a good morning hug.

Comically struggling to her feet, the mother walks down the hallway to where her son is waiting eagerly outside his classroom door.  She repeats her good-bye ritual with the little boy and as soon as he is able to, he runs into his classroom yelling, "heyyo eveybahyey!" in his toddler brogue. He seems to have forgotten his mother was ever there.

She now walks back down the hallway, which is adorned with brightly coloured children's drawings of all skill levels, and she spares one final look into her daughter's classroom.  The girl is studiously bent over a piece of paper, tongue slightly sticking out as she brings to life the latest creation that has been swirling around her imagination. The morning sun streaming through the window gives light to the many hues of her brown hair and in that moment she is breath-taking.

Smiling and exchanging greetings with the other parents, the mother heads for her car.  As she gets in, she closes her tired eyes and allows herself to have a quiet moment before starting the car and driving off for her 2 hours and 45 minutes of freedom.  She is alone. Except for the tiny life that is growing inside of her.

While she is amused at her children's independence, she can't help but feel a little melancholy. But she reassures herself it just means she's doing something right. 

It has been a long road of letting go for this mother.  Her mind wanders back to the days following the little girl's diagnosis with diabetes when she was just a baby.  Never would she have believed they would make it to this point; the mother can remember laughing at the idea of ever letting her child out of her sight for even a minute, let alone 3 hours. 

She thinks back to the first days of leaving her child in the care of another.  The anxious thoughts.  The "what-ifs?" Her racing heart every time the cell phone rang.  And how when her child was with her, she almost never knew where that cell phone was.  But on school days, it almost never left her hand out of fear that she might be needed.

How far she had come... both of them! The mother knows that it is just one stepping stone down a long pathway of firsts, but for once in her life she feels ready.  And that she can handle it.

Sighing, she starts her car, and turns out of the parking lot and onto the road.  As the school disappears in her rear view mirror, the mother whispers one last prayer for her children, then turns her eyes to the sun-splashed road ahead.

Thursday, January 16, 2014

What a difference a blood sugar makes

Elise goes to a school (public) where every child gets and Ipad.  Yeah, I know... don't even bother to leave a comment about that as I've probably already muttered it under my breath like the crazy person I am.

Every day, she has math homework.  It involves using an app on the Ipad, and on each day of the week she's supposed to use a specific app.  Last Wednesday was the first day using one of these apps for her homework.  The app was a timed game that she had to pick two numbers; the sum of which was ten.  The game operated like Tetris... there were tiles along the bottom with numbers, and a tile with a number would appear at the top.  If you correctly matched the number, the two tiles would disappear.  If you didn't, it added to the pile; which added a line every 15 seconds or so.

Elise started playing and quickly became unraveled.  I knew that SHE knew this stuff, so I made her put down the Ipad and I quizzed her on which numbers went together to make 10.  She aced it when I questioned her.  Back to the game she went and what followed was a meltdown of epic proportions.

She wailed and flailed; saying she couldn't do it and she didn't know anything... everyone could do it but her.  Again, I made her put the Ipad down until she could cool off.

Then I went to look at her CGM.  She had been in the upper 100s when she started, but was now double arrows down.  I checked her BG and she came in at 71.  We treated and decided to work on her reading homework instead.

Fast forward to this week.  Wednesday and the same offending app was her homework.  She was sitting at a nice flat 103, and  I explained that I didn't want to see any behavior like that from last week.  She went on to not only breeze through the stuff that gave her so much trouble last week, but several higher levels as well (sum of 15, sum of 20, etc.).

The reason I write about this is so people will understand what a huge influence BG can be on how Elise acts.  Highs, lows and big fluctuations can cause her to become unglued, and it's why we have provisions in her 504 that states no testing when her BG is out of range.  This always surprises people; even people who have kids with Type 1.  I'm not sure why, but nobody ever gave them this information.

Elise is about to test for the Gifted and Talented Program at her school, and I'm hoping that her BG will play nice.  Either way, I am so proud of how hard she works and doesn't let diabetes stop her.

nothing to do with the above story, I just love the fact
they are wearing mixing bowls on their heads as construction hats

Monday, January 13, 2014

How can I help?

Every so often I get emails from extended family members of newly diagnosed kids. Sisters, uncles, grandparents, and sometimes even friends. Their stories are all different, but in every email I get the same question; how do I help the parents? What can I do?

When Elise was diagnosed, we didn't have any help.  It was awful.  People who we thought were friends and our support system were nowhere to be found.  Over 5 years later it still hurts and I fight major feelings of bitterness towards these people.

So to the ones who care enough to ask, here is my two cents on what you can do to help your friends or family maintain their sanity.

Go See Them
Our 5 days in the hospital were pure misery.  They had Elise in one of the metal cages, er cribs, which she hated, so she spent a lot of time sleeping on us on the sofa.  The room was tiny and the only time the playroom was open seemed to be when Elise was napping.  We ended up eating the food we ordered off the hospital menu for Elise (all they had was grown-up food, with a few selections of baby food).  We were overwhelmed, tired, hungry, sad, and lonely.  Seriously... if they are still in the hospital, go see them.  And for the love of all that is holy, BRING FOOD!

Educate Yourself
This is a good place to start.  This link also has some great info.
Fred and I had to attend classes at the hospital a few weeks after Elise was released.  Unfortunately, we had to attend separately so one of us could be home to look after Elise.  As I sat there alone, I kept thinking how great it would be if someone had come with me.

If you're crazy enough, learn to count carbs... I had a friend whose friend's daughter was diagnosed.  She wanted to bring dinner to her friend, complete with carb counts, to make it as easy as possible.  I helped her out and thought how amazing it was that she wanted to help in that way.

Tell Them 
You know what the most UNhelpful thing you can say to someone going through a crisis?  "Let me know what I can do to help".  I bet you're wondering what is so awful about that, and I'll tell you; it puts the burden on them and takes it off of you.  

Chances are, your friends/family are so overwhelmed, scared, and tired, they don't know what they need.  The best thing for you to do is tell them how you are going to help; bring a meal, offer to tidy house for when they get home from the hospital, do some laundry, walk their dog, make grocery store runs. Don't ask; tell. 

One of the best things a friend did for us when Lucas came over a month early, was to tell me that she was going to stay with me at the hospital.  My Mom couldn't get here for a few days, and Fred needed to be home with Elise; leaving me all alone at the hospital, recuperating from a c-section and with a newborn in the NICU.  I was so scared and overwhelmed, if someone had asked me what they could do, I wouldn't have known how to answer that question. She was a life saver and I am so thankful for her.

Don't Forget
After the initial crisis is over, a lot of times people move on and forget that anything happened.  Your life may have moved on, but for the months (and even up to a year) following diagnosis, your friend/family may be struggling.  Check in on them from time to time to make sure they're doing okay.

Don't Ask Stupid Questions/Say Stupid Things
They don't need to know about your aunt who lost her leg because of diabetes, or a friend who went blind. See this video for further clarification. 

You may not 100% understand what they are going through, but your friend/family need someone to talk to; especially if they're not part of the DOC (Diabetes Online Community)  or some other support group.  Be there to lend a sympathetic ear.  Even better, encourage them to find a support group.  There's nothing better than being around people who "get it".

Of course this list isn't exhaustive and may not be pertinent to every situation, but the fact that you're here, reading this blog post tells me you're already a good egg. 

On behalf of every parent of a T1, thank you.

Friday, January 10, 2014

Pop Quiz

Put your books away, it's quiz time... can anybody tell me what this is a picture of?

If you said a picture of a Dexcom, you'd be right.

If you said a nice BG, you'd also be right.

If you said a pretty sweet 3 hour graph, that would be correct too.

But the picture doesn't tell the whole story.  In that 3 hour time period that is displayed on the dex, Elise received NO insulin.  None. In fact, when she dipped into the red, she got 6g of carbs.

Today was Elise's first field trip, and she was just a wee bit excited.  The nurse went along and just after noon, she called; pod alarm.  Basal stopped.  Crap.

I had just come home after picking up Mattias from school.  He was starved and exhausted.  I also had a very hungry and tired baby.  I knew Elise would HATE it if I had to come and change out her pod in the middle of her field trip (the nurse doesn't do pod changes per our request).

Thankfully, Elise was on the low side... hovering around 100.  I told Nurse K to watch the dex, and let me know if she started to rise and we'd figure something out then.

It turned out, nothing needed to be done.  Elise made it all the way until she got home.  Her BG was 113 and a ketone check (just in case) showed 0.2.

The knife through the heart was Elise's thought on the whole experience, "Mama, it was like being a normal kid again!  I was just like everybody else!"

Cue big, sad sigh.  Followed by tears when she wasn't looking.

Damn you, diabetes.  Damn you to hell.

***this is NOT medical advice, and I am not a doctor, although I watched a heck of a lot of ER when it was on TV.  What?  I thought Dr. Carter was cute.  Anyway, you should never follow my example and not give our child insulin for 3 hours.  Seriously... DON'T DO THIS.  This was a special circumstance and a unique experience.  

Fake Pancreas, out.

Thursday, January 9, 2014

Breaking the (sleep) Cycle

It's no secret that parents of CWD don't sleep well.  At least compared to the average parent.  But at least there are some nights where we can get a few hours.

Not around here.  Not lately.

Besides D, we have a child who suffers from night terrors.

And another who is teething, sick and miserable.

Which means no sleep for Mom and Dad.

Because every night, it's at least one child that needs our attention.

Sometimes two.

Or all three.

And sometimes, it's all at the same time.

Which leaves little to no time for shut-eye.

So if you see me, and I look like shit.  And I have no idea who you are, where I am, or why I'm wearing my bra OUTSIDE of  my shirt, just cut me a little slack please?

I haven't slept in awhile.

Thursday, January 2, 2014

Things diabetes taught me this month... December edition

Every time I sit down to write one of these, I kick myself for not making notations of the things I want to include in the post because my poor brain cannot remember much of anything past my name, my children's names, where I live, and the fact that it is imperative that I put pants on in the morning before I greet the world. So here is my December "Things"... at least, the parts I can remember.

-I never used to do this with the 7, but when I was talking to a CSR at Dexcom while troubleshooting an issue with the G4, she recommended to wipe the bottom of the transmitter with an alcohol wipe every time you change the sensor. Makes sense; you want the contact points to be as clean as possible to make sure it's reading properly.  I love little tips like these!

-It is so important to find out what your insurance company allows wen it comes to reordering supplies.  In the back of my mind I know this, but most days it's pretty low on the priority list.  It seems keeping three children alive consumes most of my energy.  For example, I had called up my Dexcom about our receiver acting wonky.  When I asked if it was still in warranty, the CSR said no, but most insurance companies allow you to reorder a new receiver every year.  It turned out that my reorder time was the end of November and because we met the deductible eons ago, there was no cost to me!  In the end, our old receiver smartened up and is still usable, but it's nice to know I have a replacement tucked away in the cupboard for when we need it.

-I love having friends from fun and cool far-off places, but MAN... swagging their foods can be HARD!  We had a family from South Africa over for dinner during the holidays and they brought a dessert.  I'm not even sure what it was called, but it had whipped cream, sweetened caramelized condensed milk, biscuits, and a bunch of chopped up chocolate bars that were from their home country.  It was every bit as good as it sounds, and shot Elise's BG into the stratosphere for most of the overnight; coming down only after multiple corrections and temp basals.  Worth it?  If you ask her, she'd say yes!

Two more things that have nothing to do with this post, but noteworthy nonetheless:

1. This post won for Best Advocacy in the Best of the 'Betes Blogs 2013. *sob*... there are so many people to thank!  Seriously though, I should write all my posts in 10 minutes while waiting at the gate to board my flight!  Thank you to Sara, and everyone who voted! Now go check out the rest of the winners!

Best of 2013 button

2. I didn't get to do it earlier, but wanted to wish you and yours a very Merry Christmas and Happy New Year.  Here's to an awesome 2014!

At the very same tree farm I was at a year ago when I
went into labour with Lucas.  
P.S. The reason I'm posting a picture of just me and the kids is because we have zero pictures as a family. One of us is always taking the picture.  If I had awesome super-imposing skills, I'd photoshop Fred in there.