M Bear

When M was diagnosed back in 2009, we received a "Bag of Hope" from JDRF. It came with helpful booklets, meters, etc and.... 

Rufus, the bear with diabetes, and his storybook. 

He comes with a medical ID & colorful patches to show injection sites.

But given that M was 3 years and 48 days old... 

a boy bear wouldn't do.

On the way home from the hospital, we stopped by the craft store to buy Rufus a pretty pink dress.

Rufus became M Bear, the girl bear with diabetes.

M Bear quickly became a favorite toy.

She had daily blood glucose checks....

and insulin shots (check out the colorful syringes)...

and matching Halloween costumes. 

A the week before M started her insulin pump, M Bear was HUGE help! 

Like M, the bear received an multiple daily injections (MDI). But then after a few days, M Bear got an insulin pump and no more shots!

It allowed M at 3 years old to understand the difference between MDI & pumping. 

After that, selling the insulin pump was easy! 

(And the fact that it was a pink pump!)

On August 3, 2009, M got her last shot before breakfast and we celebrated! 

And we started the new adventure with pumping!

But every four years an insulin pump is out of warranty and it's time to go pump shopping.

I find the whole process like car shopping. You want to pick the right make and model that has the features that you'll need for the FOUR years! 

So that's where we are now... 

Shopping for a pump that will make my current 7 year old happy as well as my future 11 year old. 

It's not an easy task and M is anti- change. 

And when it comes to something she has worn 24/7 for the last 1460 days, change is out of the question.

This makes testing out new insulin pumps hard. 

( Unfortunately for M, her mother is unwilling to order the same 

make & model insulin pump she currently owns. )

But thankfully, M Bear doesn't mind trying out new things! 

On Tuesday, M Bear started a week trial of the Tandem t:slim. 

So far we are LOVING it! 

The touch screen is awesome! 

(more to come later on the t:slim thoughts)

And tonight, since M had a pump change...

M bear needed a pump change too! 

M was in heaven! It was the first time she had ever done a pump change. 

And since M needed a new Dexcom sensor tonight....

guess who is now wearing a CGM??

I'm learning that it come in handy to keep old, outdated diabetes supplies! 

And then she needed a BG check too.....

D360

I had this awesome idea of starting a D360 section.

Basically, you take a "day in the life of diabetes" photo EVERYDAY for a year.

Yeah, who was I kidding.

I'm good at taking the photos but then transferring them my laptop & uploading them on blogger at the end of the day seems to be more than I can handle in life.

Then I was like: I'll just do a weekly "Wordless Wednesday" post.

Yeah, on Wednesday's my Girl Scouts suck the life out of me....

So......

Here ya go.... I give you some photos.

437 Questions

I saw this meme on Facebook last week. 

This morning snuggled on the couch, my resident 4 year old started off the morning with a few questions....

Why does M have diabetes?

How did she get diabetes?

Why does her pancreas not work right?

Why does she check her blood?

How does the meter work?

Does it hurt?

What is insulin?

Why does M need a pump?

How did M get diabetes?

Why does her pancreas not work?

How did you know she had diabetes?

How long did she stay in the hospital?

What did they do to her in the hospital?

But why did her pancreas stop working?

How did you know she had diabetes?

I answered each question. 

He paused. I could tell he was thinking. 

Then came the questions that I knew he really wanted to ask...

C: Mommy? Will my pancreas stop working?

Me: I hope not. But if it does, it will be okay.

C: How will you know I have diabetes?

Me: Mommy will just know. Like I knew with M. You will start asking for more water and going potty all the time.

C: I hope that doesn't happen. I don't want a pump.

Me: I know, little man, Mommy too.

C: Know what? I better just drink lots of apple juice. Then I won't ask for lots of water and go potty. Okay?

Me: Okay, little man. Maybe just a little apple juice. 

C: Mommy?

Me: Yep.

C: Can I watch Backyardigans? 

lesson learned

I'm not a "what's your number?" mom.

 I don't ask M to test her blood sugar first thing when I pick her up from school. I trust that she can feel her lows and she wears a CGM. She often tests first thing after returning home because she wants a snack.

On gymnastics days, I pick her up and we head straight to the recreation center. She changes clothes, then we head to the viewing deck to watch current class and she eats her snack.

I'm not the best about carrying extra supplies. We mostly stay in a 5 mile radius of our house during the week. I can always run home. If we are going to out for the day, I'll toss a Vera Bradley makeup bag with extra everything into my purse. 

Last Friday, I kinda learned my lesson. 

We were already running a little late, she had 12 minutes to eat her snack and be on the gymnastics floor for class to start. 

I handed her the meter case and asked her to test. 

"Ugh, mom, I don't have test strips!" She holds up the empty black container.

REALLY!?!? For the life of me, I don't see why the aide doesn't replace it with a new vial when the current one is empty. But that's a rant for another day!!

"Okay, hand me your CGM."

90

"Do you feel low?"

"No, I feel fine."

I decide to give her the snack & not give her insulin to cover the carbs. She quickly eats her snack and is ready for class. 

This is the highlight of her week!

Just as I'm sending her down down, the CGM buzzes. 

78

Crap! She's now low. 

"Do you feel low?"

"NO!"

Thankfully, I have a small tube of glucose tabs in my purse. I hand her 4 and she inhales them.

"M, if you feel low TELL YOUR TEACHER. He will call me down. Have fun!"

I see her run on to the gym floor and her class starts warming up.

Three minutes into class: BUZZ BUZZ BUZZ! I look at her CGM

Under 55. 

@#$@!!!

Now this is where I totally forget everything I know about how her CGM works and the anatomy of lows. 

The CGM can be 20% off and 20 minutes behind. Plus, when there is a low it lags more. Often the blood sugar will already be back in normal range and the CGM will still show the blood sugar dropping.

But none of that mattered in the moment. I had no meter to test and I was watching her gallop back and forth in front of me.  She didn't look low but I didn't want to take a chance. 

I ran down the stairs and entered the gym. I called her over and give her the LAST 3 glucose tabs I had.

"M, do you feel low?"

"I SAID: NO!"

"Your CGM has you at 55. Do you want to sit out for a little bit?" 

I see the fearful look in her teacher's eyes.

"No! I'm NOT low. I don't want to miss it."

"Okay, listen to your body!"

She rolled her eyes.

And I decided to trust her. 

Trust that she knows her body and will feel the low. 

And pray! Lots of prayers!

I walk back upstairs.

"She doesn't look 55. Does she look 55 to you? She wouldn't be looking this good at 55. Right?"

Another mom gives me a strange look. 

I sit the CGM back on my bag and say another prayer. 

After a few minutes, I click the CGM to check her number. 

out of range

OMG! Seriously! 

Point taken. I will be more prepared! 

the grass is always greener....

A few weeks ago, M was crying that she didn't want diabetes any more: "it wasn't fair!"

Thankfully, T often handles these moments.... together will list all the things that hate about diabetes: lows, checking blood sugar, pump changes, etc.

But that night was different.

M: It's not fair that I have diabetes.
T: No, it's not fair.
M: I want to do things all the other kids do...

This is where it felt a knife going into my heart. We have NEVER let diabetes keep Maddie from anything. Anything. Even if it means more work (or less sleep) for T & I.

(Well, that's a lie. Sleepovers. I haven't let her go on a sleepover yet. But I'm working on it - in the next few months. Pray for me!)

Me: What things can't you do?
M: Eat candy everyday.

I started laughing.

Me: Does your brother eat candy everyday?
M: No.
Me: You don't eat candy everyday because it's not good for your body. Not because you have diabetes! We make good food choices in this family. Candy is a sometimes food. We eat it sometimes as a treat.


She was happy with that answer. But it's gotten me thinking: what else does she think diabetes is keeping from her but really it's a parenting choice??

So I've started giving these long explanations for things....

M: Can I eat the fruit loop necklace I made at school?
Me: No, it's filled with yucky dye and chemicals. Plus you played with it all day at school. It's covered in germs and we just got over the flu. And Mommy can't take another two weeks of the flu.

She rolled her eyes and let out a sigh...

moving in.

When T was diagnosed, we lived in a small house (still do) and storage space was limited. 

We came back from our honeymoon to tons of wedding gifts and a boat load of diabetes supplies. For the longest time, all his stuff graced the top of our dining room bar.  Then it was moved inside of its cabinets.  The poor guy had to balance the boxes on top of the liquor bottles. 

And that's the way it was for almost 5 years: me refusing to give diabetes space in our home and life. 

Then four years ago today, I reluctantly welcomed diabetes in. 

Within hours of bringing M home from the hospital, I cleared out not only one but TWO cabinets in the bar. I packed away the crystal and barware that had hardly been used since we had kids. I rearranged the kitchen to make space for the liquor bottles. I organized bins and boxes to make life with diabetes easier. 

Diabetes was here to stay. 

Six months later, both started different pumps: M (Animas) & T (OmniPod) - each with different supplies, meters & test strips. 

The bar was sold on craigslist and I replaced with an ikea cabinet. 

Now with the help of the trusty label maker, the diabetes cabinet is the most organized place in our house. 

Diaversary

4 years. 1461 days.

Last night, I was troubled by the idea of a Diaversary. 

Maddie does't remember her life before diabetes; she's lived longer with it than without. Insulin and a blood glucose meter have always been a part of daily life in our house. 

So how will we celebrate February 18th?

By helping others. 

We spent this afternoon at AC Moore picking out craft kits. The kids paid for them out of the share jar money.   (I'll do a post later on our 3 jars: save, spend & share.)

The amazing Child Life staff at INOVA Fairfax have supported M, our family and the greater Nothern Virginia diabetes community for the last four years. They volunteer their time and resources to our local diabetes support group.  Young 20 & 30 year olds, who give up one Sunday a month for M & her friends! . There really are angels on earth... and I believe they are Child Life specialists!

The craft kits will be donated to the Child Life staff for them to use with other kids on the P-ICU floor. 

M loves a trip to AC Moore! In her mind, it's better than a toy store.  But she just didn't seem to be enjoying herself today. 

She had been running a little high (before &) after a late lunch, but she had enough insulin on board to bring her down from the 200s. I figured she was tired from last night's crazy numbers and the tooth fairy excitement at 1:30. 

At checkout, M asked if she could use her own money to buy a bottle of water. Red Flag. 

First check 483, Second check 408. Ugh! 

Really Dexcom?? Really? How can you be that off? *

Poor kid, no wonder the decision between the purple or pink friendship bracelet kits took 10 minutes.

Thankfully, a large bolus and a temp basel had her back in range for Part 2 of the celebration:

Maddie's favorite dinner: tortellini  with peas & bacon

CAKE!  Chocolate with cream cheese icing plus fresh strawberries between layers. Yum! 

And "kid" wine. Or sparkling grape juice!

Cheers! 

Here's to 4 years of an amazingly resilient kid! 

* 10 days until we toss this dexcom and move to the new G4!!

1:30 am

Tooth Fairies bring dollar gold coins....

and a crazy high BG!

Thanks for sharing TF...

Four Years Later

This started off as a short Facebook post and it grew. So, I decided tonight was the night to start a blog. Here goes nothing....

Valentine's Day week, four years ago, the flu hit our house.  And a few days later on February 18th,  M was admitted to Inova P-ICU. She was diagnosed with Type 1 Diabetes and just like her Daddy. 

For the last 10 days, since C's positive flu test, this has been a constant script in my head. 

The flu happened and then it was diabetes. 

Every time he's asked for water in a demanding urgent tone, I checked his blood glucose. The numbers aways normal…. 

Night time calls for a drink, keep me up for hours. Even if he only took the smallest sip before returning to sleep...

I hate this week every year. The people in my house are always sick and I can't get it out of my head. 

Many people celebrate their child's Diaversary, the anniversary of the day they were diagnosed with diabetes. 

For the last three, I was just thankful to reach February 18th without our third Type 1 diagnoses. Our only "celebration" has been Trey and I quickly mentioning in passing that we survived another year. 

But, tomorrow will be different. I think M needs a celebration to honor how much she has accomplished this year… 

If only Pinterest had diaversary party ideas...