Thursday, 10 September 2015

Sleepover Time

Last year this time both girls were invited to a sleepover birthday party.

They both went to the party, with youngest daughter having all intentions of sleeping over.  Amy really, REALLY wanted to, but she was holding back.  At this point, she had only slept at both sets of grandparents houses, and an Aunt's house.

She stayed and played, and partied.  The mom, a friend of mine, texting often with foods that Amy wanted to eat, and what her blood sugar was.  The mom was anxious, but said that it was no problem for Amy to stay.  Amy wanted to stay, but really struggled, often saying that she was worried she would go low in her sleep and no one would know.

At around 1am, I received a call that she had fallen asleep in the chair.  She wouldn't even lay down with the other kids, because she was scared she would go to sleep and be forgotten.  I went and picked her up, and brought her home.

Fast forward one year and the same friend's birthday party!

Again, both girls went to the party, with both girls having the intentions of sleeping over.

Guess what!  They both did!

Earlier in August we bought Amy her first iphone.  She has a few key people in her contacts, two games, and the instructions that it isn't a toy.

Both Amy and the parent texted me with sugars, insulin on board and snacks.  At the end of the night/early morning when things were winding down, Amy was at about 6.7 mmol/L.  I asked Amy to set a shortish temp basal, and eat some of the popcorn they had and that she should be good until morning, knowing that no one was going to be doing a 3am gluc check. I slept very lightly that night, but never received a text until about 7:30 am when they were getting ready for breakfast.  She was 10.1mmol/L but I will take that any day.  I figured she would be slightly high, but knew that was better than going low overnight.  She was so happy!

She now tells me that she can sleep over anywhere!

Thursday, 16 July 2015

An Little Update and a Little Look Forward

Wow!  How do I let three months pass without posting!

Here's an update:

1) school is out for the summer and the girls are at their Nanny's for the summer.  They are both completed swimming crash courses.  I'm hoping for them to pass Red Cross level 1 and 2.  I've never had them in lessons before because we have a very archaic system here and I wasn't going to stand in line for 8 hours to register them.

2) Next year brings a new school for grades 4-7.  I'm so worried about this.  One I think the age difference is too great for maturity.  Also, I contacted the principal about 3 weeks before school ended because I wanted to introduce myself and because I was hoping to learn the teacher's name for next year and set up meetings for the Fall.  after three attempts I finally received a response with less warmth than I had hoped.  Because of this, I sent the new NL guidelines for kids in school with diabetes.  Guess I might have to play hardball here.  In the end, he did offer to set up meetings with teachers on the admin day before school starts.

3) I have both girls registered for Valley Danceworks Inc for this fall.  This is an organization that offers classes in Ballet, Tap, Jazz, Acro, Irish, Latin, Dub-step and others.  It also offers an after school program.  For $100 LESS per month than I was paying for 1 hr of childcare, we get the afterschool program AND access to all these classes.  I need to do up a package for the organizers, especially since this is a time of day that lows repeatedly show up.

4) We had the quarterly diabetes clinic in St. John's.  I'm happy to say everything is going good.  Her A1C actually dropped another 0.5 and is currently 6.9!!!! I was thrilled!  It's always nice to hear from the team that you are doing a great job!

I think that is everything for now.  We are headed out for our RV vacation in 4 weeks!

Wednesday, 1 April 2015

A pump is great....Until it isn't

Kind of a weird title right?

A pump is great....until it isn't.

That is how I felt about Amy's pump this weekend.

Amy has been pumping for two years now.  We had a wonderful set up with a wonderful Medtronic Rep.  She flew to our home town and worked with our hospital diabetes educator to set up the pump.  It was nice not to travel for a change.  She brought a Lenny the Lion keychain. She brought an extra pump pouch, she brought an extra glucometer for school.  They were great.

This very same Rep also sent us a big stuffy Lenny when I called to see if she had any discounts coupons or codes for one.  They Canadian site was selling them for +$70 whereas the American site was selling them for $25.  Guess what?  She sent us one.....for free.

I've called the help line many times and have received wonderful service.  They are always prompt and friendly.  I have no issues with Medtronic.

Pumping has of course had its up and downs.  We've been lucky.  I think we've only ever had to change one site because it was not working for us. Amy's only ever hauled her site out in her sleep once (and she woke up for it).  Our batteries last long (thanks Duracell) and we can extend to 4 days before site change in a pinch.

Last month, we had a "bad battery" alarm.  That's the first time I've ever seen that.  Luckily it was in the middle of the day because you know what happens?  the pump shuts off.  Blank, dark screen.  right when you are in the middle or an 80+ carbohydrate meal from Burger King.  Amy was at her Uncle's house.  I get a call.  Something is wrong with her pump.  It stopped giving her insulin.  By the time I got there, it was just shutting down.  My first instinct was to scold Amy.  I thought she had a "low battery" alert that she had ignored.  It's happened at school before.  But she assured me that wasn't the case.  It wasn't until I replaced the battery, the pump started up again and I looked at the alarms that I saw the bad battery alarm.  This was a brand new battery....only 2 days old.  I didn't think much more of it.  Was just thankful that it was during the day. For those that are wondering, I looked at the insulin on board and gave the rest of the insulin through the pump, that should have been delivered before it shut down.

This past Friday, we were headed to our family cabin.  You can drive so far up the highway, but then the rest of the way is on snowmobile (Yes, there is still LOADS of SNOW!).  On the way, we stopped into Tim Horton's Drive Thru for a sandwich and donut.  Amy tested her sugar, and bloused her insulin for the sandwich first.  When it was time for her donut she says that something is wrong with her pump.  Turns out there is a Motor Error. We follow the onscreen directions and wait the 5 minutes until we finish driving.....Sorry Amy, you can't have your donut just yet!

When we stop, I do a quick google search and see that most people report this to Medtronic.  I had already had the pump going again by doing the rewind it suggested, disconnected, primed and reattached to site.  All was working well. 

When we arrived at the cabin and got settled away, I let Amy bolus for her donut.  Yup, pump still working.  I decided to call Medtronic just to have it on our file that we had this issue and to see if there was anything else I had to do.  I gave the necessary information for them to bring up our file and explained the error we had.  I'm still not 100% on what he said because I was shocked that his second sentence was that they were going to send us a new pump via courier right away.  It was Friday evening at about 5pm AST.

Now the fact that I'm in Labrador means that we never get ANYTHING right away and I told him that I would have it by Monday.  He said we would call me back.  When he called me back, he confirmed that it would in fact be Monday before I received it.

Every few hours over the weekend I checked to ensure the pump was still working.  We didn't have another issue with it, and there is no way to know if we ever would again.  I do however feel vindicated.  I still get up at 3am every morning to check Amy's sugar, confirm that her site is still attached and make sure she is alive and well.  If this error had have happened in the middle of the night, her sugar would slowly but surely rise.  I feel so grateful that the longest she typically goes is about 3 hours without one of us checking her.  Some people think it's foolish, but look what can happen.

So we now have the Brand New pump all set up and running.  I wish to thank Medtronic for their quick actions with my issue, and for now we remain a loyal customer......Can we have a Cloud too?

With all that being said.  A pump is great....until it isn't!

Friday, 13 March 2015

It only took three years

We just returned from the city for Amy's diabetes clinic appointment.

Every 3-4 months we fly to the Province's capitol city where the Janeway Children's Hospital is located.  Thankfully we have insurance and all but a vehicle is paid for.

Because of all the snow this year, and the municipal strike, there was a lot of missed school days, so we waited until after school on Monday before flying out.  Tuesday, we got up, had a nice breakfast, did some shopping, then headed on over to the hospital.

The appointment was very quick this time.  Height, weight, blood pressure.  She grew an inch, gained 2 lbs and blood pressure was fine.  We saw the school liaison nurse first. No issues with Amy's school, so that was quick.  Next we saw the dietician.  Amy was very talkative this time.  Basically no problems with diet, however I did have a few questions.  Amy is much hungrier at bedtime now, and I wanted them to have a record that she is eating more then.  We decided to add another carbohydrate at bedtime.  Then both the endocrinologist and the Diabetes educator came in at the same time.  They had printed her pump reports.  They took the sample for the A1C test.  Everything looks good....keep up the good work! 

Then we were on our way.

We went to Menchies for some cake batter ice cream, did some more shopping (including Target which is liquidating the store as they are pulling out of Canada), visited some friends, then packed up all our goods to head home the next morning.

Yesterday I received an email from our CDE.  Excellent news, A1C is 7.4%.

Mouth drop.

I knew her sugars had been good lately.  We still have issues with lows between 2-4pm and she still has a breakfast spike around 8am.  But I was shocked because her A1C in November was 8.4%.

The target for kids ages 6-12 in Canada is </= 7.5%.

After three years.....we finally reached target.

I know this is only an average and doesn't reflect everyday, or the highs and lows, or what is going on in life.  I know that hormones will soon come into play (9yo in April...EKK!), and I know that it can go up as easily as it went down this time.  I also know that it is by no means a report card......but man it feels good!

It feels like Amy's body has finally said....

Great work guys.... 

You can do this!

Saturday, 21 February 2015

Third Diaversary

Sunday, February 8 marked three years since Amy was diagnosed. 
You can read about her diagnosis story here.

I can't believe it's been three years.  I also can't believe it's been three months since I've blogged.
I think I am more comfortable in our journey that I don't feel the constant need to feel connected to others dealing with diabetes.  There was a time that every evening I was somewhere within the DOC reading about my online friend's lives and how they struggle and most importantly how they deal with diabetes.  I check in every so often, see what everyone is up to, but I really haven't had anything to say lately.

Here is an update:

In November Amy participated in the JDRF Kids for a Cure Awareness day on Parliament Hill in Ottawa, Canada.  It was an amazing, inspiring experience.  Our MP was very interested in what we had to say about Amy's life living with diabetes.  We left her with a scrapbook we made, and information on JDRFs request for addition funds to expand research within Canada.

Amy in front of the Parliament Building
Amy and  Member of Parliament for Labrador, Ms Yvonne Jones

Half of the delegates, with the Prime Minster of Canada, Stephen Harper (Amy is second row, third in)


In November we also flew to St. John's for her diabetes appointment.  She had bloodwork again for her thyroid.  We don't get A1C results back until we are back home, and disappointingly they did not change.  They were still the same as they were the time before in June.  I'm hoping we have made some improvements this time around.

December saw Christmas come.  We had a nice relaxing break this year.  I took Christmas off so was home with the girls all break.....first time ever!  Amy's sugars ran high for most of the holidays.  Not because she ate too many treats, but mostly because it was so cold that we couldn't get outside to do anything! 

In January our town municipal workers were locked out.  All the snow we had, paired with the cold temperatures, my girls have only been to school about half the number of days they should have.  The school buses have stopped running, grade K and 1 are alternating going to school with grade 2 and 3, so that there isn't too much confusion with all parents having to drop off and pick up their kids.

I'm happy to say that mid February the workers have reached an agreement, but they are still working on cleaning up our roads in one of the snowiest winters we have had in about 20 years.....and we haven't even hit our snowy month yet! February 8 was the third Diaversary.  We celebrated with cake and presents.

In other news, Amy also started using the CGM with her Medtronic pump again.  I'm happy to say that whatever modifications that Medtronic did to their Enlite sensors this fall worked....we have not had ANY of the issues that we had, that led us to stop the CGM for 6 months.  I'm hoping this will give us the boost to get that A1C down into a better range.

Anyone have any ideas for decreasing a breakfast spike, other than pre-bolusing?

What's on the horizon for the spring?  Well, hopefully school gets back to normal soon; March we fly to St. John's again for the Endo visit; April we are going on our very first Disney Cruise; May is the Spring concert and Ballet recital.  Then we are heading into summer!  Let's just hope all that snow is melted by then!