Friday, September 21, 2012

"DxONE" - thank you!

Today I attended the Closing Day of the Auburn International Film Festival.

Auburn is a bit of a hike for me, so not exactly my local cinema - but the trip was well worth it.

You see, Premiering today at the Auburn International Film Festival was "the first narrative film ever made about Type 1 Diabetes."

As a parent of two kids with T1D this film was ALWAYS going to be a tear-jerker for me. 

I was at the AIFF with a fellow T1D Mum and a new friend I met through the iBGStar trial. We sat through the first five short films, which were all wonderful in their own way (especially "Ezzy & Cleveland"), waiting patiently for "our" film to start.

As soon as I saw the name of the Director (Dan Masucci) come on the screen I knew we were up, so I handed a tissue to my fellow T1D Mum sitting on my right.

The opening scene had me going, of course. The sound of an alarm clock, blurred at first and then coming sharply into focus: 3:00am.

Masucci's film gave an incredibly accurate and poignant insight into what has become routine for me and so many other T1D families, the 3am BGL check. Not just a "let's check the numbers" thing - so much more for parents, who hold their breath while the meter does its job; wondering whether they have to wake their sleeping child to feed them against their will, or give them more insulin to bring down a blood glucose reading that is already doing damage to their young body. 

A BGL, to a parent of a child with T1D, is so much more than just a number.

Not only does this film share the feelings of a parent of a child with T1D, it also give us a glimpse of what our kids are feeling, the frustration with having to be so careful, always having to do the right thing, knowing what to do but also knowing that no matter how well you manage things it's not always going to turn out right.

I hope that this film will be distributed to schools world-wide. It may just help in the never-ending battle to educate people about what our kids go through every single day, and why we, as parents, worry so much.

Thank you Dan Masucci, your film was outstanding.

Below is the official full length trailer for DxONE. 

Friday, September 7, 2012

A very long but productive week...

I told the kids at the start of the week that this week would be a bit manic and I have to say that that was a bit of an understatement!

After getting one child up at 5:30am so that I could get him to school on time to get the bus to his regional athletics carnival it was then Uni on Monday - and handing in the 2nd of 2 assignments due within a week of each other (and now to get started on the next 2).

Tuesday was another early start - getting the other child up at 5:30am for the same reason - another regional athletics carnival (thankfully next year they'll both be in high school so will attend these things on the same day!) then a meeting about JDRF's 2012 Kids In The House event in the city.

Wednesday was work.

Thursday doing my bit at JDRF headquarters in Sydney, getting on the phone with my 2012 Kids In The House ChairMum hat on. No point heading home from there on Thursday evening because I then had to head to Doltone House in Pyrmont for the iBGStar Launch!

It was a lovely night and I finally met in person so many people I have been in contact with either online or via the phone over the last 18 months. I was also very lucky to meet some amazing people I have heard about but never been in contact with, including Dr Gary Deed, Team Type 1 Cyclist Justin Morris, and Director of "Type 1 Diabetes Network" - Susan Greenbank

Although I didn't get to meet Chef, Michael Moore - I just wanted to say to you Michael - the food was fabulous and I loved hearing your perspective of live with diabetes. I had a quick look at Michael's new recipe book "Blood Sugar" and you can be sure that this will find it's way to my bookshelf in the very near future - as soon as I pay off the enormous parking fine I (and I suspect many others) found on my car after the event!

You may remember that the kids and I were asked to participate in a video news release about the iBGStar - and this video was shown at the launch! How exciting!

So, without further adieu...

Well, on that note I will finish this post!

I also want to say to my lovely fellow multiple T1D Mum, Meri - you and your beautiful family have been in my thoughts and prayers constantly.

Tuesday, August 28, 2012

"So, what do you do when you test their BGL in the middle of the night?"

This was a question asked during a lovely dinner at an old friend's house a few nights ago.

Before I answered her I had to ask myself whether this person really had any idea what she was asking, or, if she really wanted to know the answer to that question...

Oh, and of course, would I risk overstaying our welcome if I took the time to give her a complete answer!

You see, there's no simple answer!

On a good night, if their BGL is in a good range at their bedtime, I will test each of the kids at around 3am and then, after entering their BGL into their pumps and hearing that little sing-song alert to let me know that the pump is not giving them a correction, I will, hopefully, go back to sleep!

We don't get many good nights.

In most cases, the answer to that question goes kind of like this...

If BGL is lower than I'd like it to be at child's bedtime I will usually get them to have something to eat or drink, re-test in 15 minutes to make sure BGL has come up. If they've come back up to a "good" level I will go to sleep until the 3am alarm goes off.

If BGL is still a little low I will stay up a little later, maybe do some reading etc, and check again before I decide to call it a night. If all good, I will, hopefully go to sleep until the 3am alarm.

(it's almost 11:45pm here right now - a BGL of 1.5mmol/L (27mg/dL) at your child's bedtime is not usually conducive to a "good night")

(screenshot of actual BGL reading on iBGStar App)

If, however, they have done some kind of activity during the day that might cause BGL's to drop overnight (soccer, running etc) I will have to set the midnight alarm.

If a BGL is lower than I'd like it to be (but not too low) I will reduce the background insulin on their pump (since using the word "basal" would mean nothing at all to anyone not living with T1D), then check again in about an hour to make sure said child has come up a little - then, hopefully, go back to sleep.

However, if, after an hour, BGL has stayed the same or dropped - depending on how far they've dropped, I'll reduce background insulin again, and check again in an hour.

If BGL is too low (or has dropped to the point of being too low after reducing background insulin) I will wake said child and get them to drink some juice or a chocolate milk; stay awake until I re-test in about 15 minutes - if BGL has come up, I'll, hopefully, go back to sleep - BUT - will set an alarm for an hour later to check again to make sure child hasn't dropped again.

If BGL has not come up, or has dropped further, treat again, wait another 15 minutes and around and around we go.

So, all of that is based on BGL being on the low side.

The other side to T1D is the lovely HIGH BGL's! And on insulin pumps this is something that we have to be very careful about! We have to figure out whether a high BGL during the night has been caused by an incorrect bolus for dinner, excitement, start of an illness, hormones or a potential problem with the pump or the infusion set! 

If BGL is high enough to require a correction via the pump then I will usually set an alarm for an hour later to make sure BGL has come back down into range. And if it has, then, hopefully, I will go back to sleep!

(Screenshot of some of my alarms - gotta love this feature on iPhone)

If it hasn't come back into range after an hour, or if it has gone up I have to decide whether to do another correction via the pump, or - depending upon how high the BGL is, do a site change on my sleeping child! Yep, that involves a needle. Either way, I still have to set an alarm for an hour's time to check again to see what's happening. If all good and BGL coming back down into range, hopefully, I will go back to sleep.

If it hasn't - well, you get the picture.

Then, of course, there's the possibility that a High BGL, after a correction, will turn into a Low BGL - the dreaded roller-coaster ride. On those nights there's not much sleep.

There's one thing that you have to remember, though, when trying to understand all of this and trying to figure out WHY a T1D parent gets up so many times to check on their child.

Insulin is a potentially dangerous drug. 

When we are deciding, in the middle of the night, when we are exhausted and severely sleep deprived, whether we are going to give our child insulin we're not just thinking about numbers and about trying to get our child's BGL back into range. We're also thinking about the fact that we are giving our children a drug that has some incredibly scary side effects. Yes, it keeps them alive, but it also has the potential to do a great deal of harm very quickly.

And remember, I have two kids with T1D - so even if one child has perfect BGL's overnight, chances are, the other won't.

My friend did actually want to understand, and did take the time to listen, so, thankfully, I did not wear out my welcome. We had a lovely dinner and she told that she thinks my kids become more and more amazing each time she spends time with them. 

Of course, not much sleep was had that night after dinner with our friends, you see, the kids and I had run in the Pub2Pub Fun Run earlier that day. Nothing says "post activity hypo" quite like a 13km run along Sydney's Northern Beaches.

The kids before the start of the race.

Did I mention it was a soft-sand start!

(Screenshot of my Pub2Pub Run from Nike+ Running App)

Oh well, T1D may prevent me from getting any sleep, but I won't let it prevent the kids from achieving whatever it is that they want to achieve!

Wednesday, August 22, 2012

iBGStar Update!

Well, we have now been using the iBGStar for about a month and I am pleased to report that we are STILL loving it.

This means that it has passed the "novelty" test in my house!!!

As in - the novelty has NOT worn off!!!

BOTH of my kids have now given up their former meters in favour of their iBGStars.

Tim likes the fact that he no longer has to carry around a bulky meter. He's still hot a huge fan of using test strips instead of a cartridge, however, he feels that the rest of the benefits of the iBGStar - size, coolness factor etc, outweigh the nuisance of test strips.

As for his issue with the meter covering the headphone jack on the iPod Touch he has figured out that that's actually not a bad thing when using the iBGStar attached to his iPod at school. He cannot get into trouble for using his iPod at school (since it is now a "medical device") - and, he cannot be wrongfully accused of playing music on his iPod while at school (since they're not allowed to do that at his school) - because he actually cannot put the headphones in there while the iBGStar is connected.

So, Issie and Tim are the only two children at their school who are allowed to have their iPhone/iPod Touch with them at all times!

I like that they don't have to have the iBGStar meter attached to their iPhone/iPod when they're using it.

Most of the time when I'm doing overnight testing I can just use the meter on its own (the kids have passwords on their iPhone/iPod - so having to enter the password before testing if it's attached to the device can be a touch too difficult for the brain to cope with at 3am) - and I'll only plug it into their iPhone/iPod Touch if their BGL is out of range and I need to do a correction or make some other notes that I'm likely to forget by the time the rest of the world wakes up. So, on uneventful nights (although have to say, not too many of those in my house) I can just test on the iBGStar meter then get the kids to plug it into their iPhone/iPod before they go to school.

Another benefit of not having to have it connected to the iPhone/iPod Touch is that it is tiny enough to stick in the inside pocket of your ski jacket when you hit the slopes!

The kids and I attended the Riding On Insulin camp (check out their updated website - pretty cool) at Mt Baw Baw in Victoria about 10 days ago and the tiny size of the iBGStar meter made it very easy to keep it snug and warm inside their jacket pockets with no real issues of the meter getting cold and not working correctly.

Of course we demonstrated the iBGStar to lots of parents and kids at the camp, all of whom were VERY excited about this new meter with the general response, other than the initial, "coooooooool", being, "How do I get one???"

So look out Sanofi - I hope you've got enough stock coming in time for the official launch in Sydney next month!

Just one other thing I wanted to mention - the way you can customise your notes.

I LOVE this function.

Issie, however, thinks I've gone a bit nuts because the list of "regular" notes under each category is now almost as long as her arm (or, would be if it was not on an electronic device).

Let me explain my reason for having so many "regular" notes!

The sleep-deprived brain of a mother of 2 kids with T1D, who is working and studying politics and commercial law at Uni, is not very good at remembering details with respect to what was going on with either child's BGLs at any given time.

So, for me, the ability to be able to just tap on something that will keep a record of all the reasons for a BGL being through the roof or way too low, means that I now don't have to suffer through the inevitable questions from the Diabetes Educator come Clinic Day; "Well, why was her BGL so high/low at this time?", "Did he forget to bolus?", "Did she/he feel that hypo?" and the list goes on!

Now I don't have to remember ANY of those things - the iBGStar does this for me!!!

Here's a list of just SOME of the notes I have saved which can now be accessed just by touching the screen:
  • forgot to bolus for dinner
  • insulin pump correction
  • feeling lower than reading
  • feeling angry
  • carb free meal
  • temp basal increase
  • temp basal decrease
  • positive ketones
  • negative ketones
  • tried to steal best friend's fairy floss at the footy
  • had just met Hugh Jackman at the footy and was a teensy bit excited...

Okay - well maybe I just made up those last two - although we DID meet Hugh Jackman at the footy!!!

at Manly Sea Eagles v Newcastle Knights inaugural
19 August 2012

The iBGStar App is available through the App Store - here's a link for you so you don't have to search for it.

And here are some screenshots of some of the features on the iBGStar App - this App gives you sooooo much information, is really easy to use and really easy to customise!

Check out the BGL reading screen on the left (above) - you can add as many notes as you like,
well, at least so far I have not received any warnings that I've added too many notes,
 and believe me, I add LOTS of notes!

These charts are really cool - and, of course, they're interactive! If you move the line onto any of the dots it will then automatically take you to the BGL reading screen for that particular reading,
so you can easily see all the details and any notes you've made.

Oh - there is a way around the inability to be able to SMS single BGL results (say if the kids are at school and have a hypo or hyper and want you to know about it - which Issie so kindly did while I was in the middle of a lecture - which I then had to leave so that I could help her deal with a hypo that wouldn't budge) - just take a "screenshot" of the reading and attach that picture to your text message.

Oops - almost forgot this other thing...

Issie has told me that the readings on the iBGStar more closely reflect how she is feeling than any of her other meters have. I take this as a good thing because she is now more likely to trust a reading on this meter than she has on other meters.

All in all, we're loving the iBGStar, still.

My vacuum cleaner, however, probably isn't. It had become used to a life without test strips. Oh well, you can't please everyone!

Can't wait for the Official iBGStar Launch Party on 6 September in Sydney!

Wednesday, August 15, 2012

Riding On Insulin - Australia! A huge success!!!

Someone told me many years ago that a person is truly blessed if they have a friend in every corner of the world.

In that case, the kids and I are, most definitely, truly blessed.

On 7 August 2011 (a little over a year ago) I was invited to attend the JDRF Research Luncheon in Sydney at which JDRF International's President, Jeffrey Brewer, was to be the special guest.

While the luncheon itself was informative and very interesting, I had no idea that some of the people I met at that luncheon would become very important to me, and to my children.

I am, of course, referring to Sean and Mollie Busby and their Aussie friend, Peter Yates.

Following that meeting I stayed in contact with Mollie and Peter. Mollie has kept me updated about Riding On Insulin camps both in Australia and Canada, and Peter joined the Parents of Aussie Kids with Type 1 Diabetes Support Network and is a wealth of information.

If you're familiar with our own story you would know that the kids and I attended the first Canadian Riding On Insulin ski/snowboard camp in March 2012 at Nakiska, just outside of Calgary. We were, of course, the only Aussies at that camp.

At the conclusion of that camp Sean and Mollie asked Tim if he would be interested in being a Junior Coach/Mentor for the camp they were planning in Australia during our ski season. Of course he said that he would love to help out! Tim had also made a good friend in one of the ROI coaches, and best friend of Sean Busby, Alex Zipperer - and was thrilled that Alex would also be attending the camp in Australia.

During the planning of the camp, and in the weeks leading up to the trip to Mt Baw Baw in Victoria we hit a few bumps in the road which forced me to contact Mollie and let her know that, unfortunately, the kids and I would not be able to attend. However, Mollie was determined to make sure we could get there so that Tim could fulfil his role as a Junior Coach/Mentor, and, so that I could run the parent networking session while our kids were out skiing on the Saturday morning.

Because of the kindness, understanding and generosity of Mollie and Sean Busby we were able to attend the first ever Australian Riding On Insulin Camp from 10-12 August 2012 at Mt Baw Baw in Victoria!


ROI had a wonderful response from volunteers through Diabetes Australia Victoria and for many of the kids at this camp there was a ratio of 1:1 when it came to supervision and support! Many of the volunteers had had previous experience at DA Vic kids camps and there were also Diabetes Educators from various hospitals and clinics in Victoria.

Joining Tim as a Junior Coach/Mentor was Peter Yates' 13 year old daughter Milly - who is a champion snowboarder herself. Tim and Milly, and also Issie, became fast friends and it was so amazing to see these kids feeling so relaxed and comfortable in each other's company.

On the morning of Saturday 11 August, once the kids were all sorted out and had gone off with their coaches, I gathered the parents in our "base" and began the parent networking session. I started by inviting each and every parent to introduce themselves and tell everyone their "story" or anything they'd like to share about life as a parent of a child with T1D. Each parent told their story and then we spent a few hours covering many topics. We were so involved in discussions that we barely noticed that our kids were starting to dribble back in to get ready for lunch.

The kids and I stayed in a lodge with Mollie, Sean and Alex and all of the volunteers for the ROI camp. On both the Friday and Saturday nights, after the orientation and the banquet, we were joined by Peter and Milly at Frosti Lodge where we pulled all the tables together and talked and laughed and shared stories for hours.

The ROI camp not only gave the kids and I the opportunity to spend more time with Mollie, Sean and Alex and to get to know Peter and Milly - but also to make MANY new friends and reconnect with some families we have met along the way since our journey with T1D began in April 2010.

All of the kids hit it off right away and there was not a moment during the entire weekend when I saw anything other than huge smiles on the faces of our kids.

I was sooooooo incredibly proud of a few of the kids in particular, who had never skied or boarded before and were absolutely terrified at the start of the camp! Those kids know who they are - they are amazing! Despite their fears they just got out and did it!

Our weekend with Mollie, Sean, Alex, Peter, Milly and all of the other participants and volunteers at the first ever Australian Riding On Insulin Camp at Mt Baw Baw most certainly showed me that the kids and I are truly blessed.

Mollie and Sean, we just can't thank you enough. Our door will always be open to you and Alex whenever you are in our neck of the woods and you will always remain in our hearts.

I would also like to say a huge THANK YOU to my lovely friend and fellow T1D Mum, Meg, her husband Dave and gorgeous T1D daughter Gemma who opened their home to us to break up the long trip from Sydney to Mt Baw Baw. If there is one wonderful thing about T1D it is that it brings people together. For the most part the people I have met through T1D are not just friends, they are family.

Friday, July 27, 2012

And now for the iBGStar!!!

Today I visited the lovely Mary and Andrew at Sanofi and collected the two iBGStar BGL meters for Issie and Tim!

Was lovely sitting down with both of them to check out this fantastic meter and the iBGStar App!

At this stage, according to the box for the meters I have received, the iBGStar:

"Can be used with or without an iPhone 4, iPhone 3GS, iPhone 3G, or iPod touch."

and is:

"MADE FOR: iPod Touch (1st, 2nd, 3rd and 4th generation), iPhone 4, iPhone 3GS, iPhone 3, iPhone."

And now that I am home the kids and I have had our first play around.

Initial impressions:

  • VERY easy to set up.
  • VERY easy to customise - my kids are both so different so the fact that this is not a "one size fits all" system is exactly what we need.
  • VERY cool - LOVE the different themes and the way they change according to the time of day. Everyone dealing with T1D hates having to do their BGL's several times a day, so Sanofi has done a great job in making a device and App like this fun to use - hopefully this will encourage the kids to do more tests!
  • the meter itself is tiny - so no need to carry around a separate bulky BGL meter.
  • love the ability to be able to charge both the meter AND the iPhone/iPod Touch through the one USB connection at the base of the meter - or you can charge the meter on it's own.
  • One problem that Tim picked up straight away - although this depends on the device you are using with the iBGStar - Tim has the latest version of the iPod Touch (4th Generation) - which has the headphone jack at the bottom (which I personally think is an Apple design flaw) - so if the iBGStar is attached to his iPod Touch it covers the headphone jack completely. Given that the iPod Touch is  more often than not used to play music through headphones this is definitely a negative for this model of iPod Touch. However, for other versions of the iPod Touch, and for the iPhone, headphone jacks are at the top of the device so this is not a problem.
  • We have been provided with a case for the iPod Touch/iBGStar - which neatly keeps the iBGStar in place - and this is a great idea, however - Tim won't use it because of the headphone issue. HOWEVER - since the kids are not allowed to listen to music on iPods or iPhones at school he will use the case for keeping it all safely together when he is using the iBGStar at school.
  • The sharing feature is great - although sharing is only via email (but there are always ways around this as any child of the 21st Century would quickly figure out).
  • A great big plus is the fact that the ENTIRE User Guide is right there in the App! How many times have you been out and done a BGL only to receive an error message and you have NO idea what that particular error code means! How many of you carry your BGL Meter User Guide in your kit with you? None, I suspect! This makes it easy - just tap the "info" button - then "Help" and the full User Guide is right there on your screen!
  • The data is clear and easy to read - if you're looking at the trends chart and you want to know the details of any of the "dots" on the chart - just tap on the dot and all the details for that reading are right there together with any notes you have made.
  • You can add BGLs manually if, for some reason, you have done them on another meter (say you forgot to charge the iBGStar and had to use your back-up meter).
Over the next few days I'll post more information about how we are going with these new meters, but for now, here are a few photos of some of the screens in the App - this is with the iBGStar attached to Issie's iPhone 3Gs.

I've only had these things in my hands for a couple hours and already I'm loving the iBGStar.

Can't wait to tell you more about it!

Wednesday, July 18, 2012

Gearing up for Riding On Insulin - Aussie Style... and other things...

Before I start talking about the Riding On Insulin camp I just wanted to share with you a few photos from our filming day for the educational video! It was a lot of fun and the kids got quite a good look at the world of video production - being asked to do the same thing over and over, waiting until everything in the background was in exactly the right place, coming up with different ideas of what will work and what will not!

Can't wait to see the finished product!

Okay - now for .....

The first Australian camp is now only a few weeks away and we are really looking forward to it!

Tim will be a Junior Coach and Mentor - and is definitely excited about that. 

It is just fantastic that Sean and Mollie Busby are bringing this experience to Australia. 

Sports like skiing and snowboarding tend to frighten parents of kids with T1D because not only are you dealing with activities that burn a LOT of energy and therefore put T1D kids at risk of delayed hypos but you are also dealing with extremes in temperature and being in situations where it may not be so easy to get medical assistance quickly.

Almost ALL of the ROI instructors, coaches and mentors have T1D themselves, and every group is accompanied by fully qualified Diabetes Educators/Nurses. 

There are two main aims of these camps - first of all to show T1D kids that they CAN do these things and that they should not let T1D stop them from living their lives to the fullest and going for their dreams with everything they have. The other aim is to get parents together to share their experiences as parents of kids with T1D - because this is a FAMILY disease. Siblings are also included in this experience.

Here is a video about the Riding On Insulin camps - a great deal of this video was shot at the first ROI Camp in Canada, at Nakiska Ski Resort just outside of Calgary - and Tim and Issie are in this video!