How Does Life Look?

I had a few people asking me questions as of late about Alison's life on the pump and I realized that unless you live with it every day, you may not grasp the concept of the overall idea of the pump and what it entails.

The pump is a device that is attached to Alison 24 hours a day, without interruption, via what is like a small catheter, under her skin that delivers mini doses of insulin to her on a continuous basis (hourly).  We program the pump and tell it how much insulin to give her based on trial and error and math that we and her medical team came up with.  This hourly rate, which changes throughout the day, covers Ali's insulin needs for times of "fasting".  It is a basal rate

Before Alison eats we must test her Blood Glucose Levels by pricking her finger with a lancet and putting a drop of blood in a Blood Glucose Meter.  The meter gives us a reading.  We then will use the amount of carbohydrates in the food she is about to eat, do some fractions, figure out how much insulin her body needs to cover off the food, then consider her whether or not her blood sugar is high or low and determine how much insulin to give her prior to her consuming the meal of snack.  This amount of insulin is called a bolus.

As you can guess, meals and snack are not quite as grab and go in our house as they might be with a non-diabetic pre-preschooler...but we're used to it and we manage quite well!

here's a pictorial of the actual process of putting Alison's pump set into her skin (we change this every three days and plan on adding a video soon).

This is what the piece of plastic that stays under Ali's skin looks like.  There is a needle in it, that pokes through the skin during the insertion process

So first we put Emla numbing cream on the site for ten minutes to take some of the sting out of the needle.

This is what the needle looks like

We disinfect the site with some alcohol (yes, it is cold)

Alison has an allergic reaction to the adhesive on the site of her insertion set, so we have to put Tegaderm (a clear bandage used in hospitals) down on her skin as a barrier between the set and her body.

We uncoil the cannula (the tubing that the insulin will travel from the pump into Alison's body through)

We cock the needle by pulling back the white trigger mechanism

We make sure the cannula is in the right position

Then we inject the needle, Ali gets a pinch

We remove the cover

We put another sheet of Tegaderm on top of the site.  Alison has very little body fat (she's pushing her tummy out for the insertion process) and the site sometimes will come out without being taped in place.

Once we take the paper off the sides, Alison will walk around like this for three days, until we change her site again.  We  rotate sides, so the next time it will be on her left side to avoid creating too much scar tissue in one spot.

No Fuss, No Muss

My latest estimate is that we're at around the $465 mark for fundraising so far.  Pretty darn good for a four-year-old who set a goal of $100.  That isn't to dissuade you from donating...we are more than happy to grind this years goal into dust and have the bar raised really, really high for 2013!

Yesterday was one of our first real fuss-free set changes.  Alison didn't protest even a little bit at any point throughout the process.  She usually takes advantage of having had a set change by sitting around on the sofa for a while after complaining that the event has left her in pain and unable to walk or clean up her toys, brush her teeth or what ever other action she wants to put off, but she didn't even take that route.  She really is quite the trooper!

A BIG THANK YOU

A big thanks to all of you who’ve donated to Alison’s Telus Walk to Cure Diabetes so far!

To all of you who haven't donated and plan to, you still have time.  The walk is on June 10th.  Remember that any donation, $1, $2 $5, it is all appreciated!

To those I work with.  Bring in your spare change - I might just be hitting you up for it in the weeks to come!  Come on, do you really need those quarters and loonies?  Oh, I'll take the smaller coin too :)

On Saturday Ali and I went to the Spring into Action Diabetes Expo at the Hampton Inn.  We went last year and I was shocked by how much things seemed to have changed for us.

Alison has grown up so much in the 22 months since her diagnosis.  Part of that must be the difference between a 2.5 year-old and a 4 year-old, but I imagine that the other part is living with Type 1.  I asked her, on our walk to the hotel, if she knew what it meant to have Diabetes and her response was that her pancreas was sleeping and that it would not wake up.  She also understood that because of this, her body no longer makes insulin and that she needs her pump to supply her with the insulin that she needs to carry the sugar from her food out of her body.

Part of me was very proud that my daughter is smart enough to grasp such a complex idea - Ali is bright and I couldn’t be more pleased about that, but it also breaks my heart to know that she understands the sad reality that is part of her life and always will be.  No parent wants to hear that their four-year-old understands that without a machine, they will become gravely ill and they know it.

We were so lucky to meet some great people at the Expo.  We got to catch up with some old friends and make new ones.  I was especially pleased with the session "Does Anyone Know What I am Going Through" where a panel of young Diabetics and their families discussed what their challenges and triumphs have been. The young men and ladies, and their parents were so open, honest and frank and my eyes were seldom dry.

Looking forward to next year's event and seeing where we are in our journey by 2013.

Last Thursday was Alison's first after-pump check up and I'll admit to being a bit nervous.  Okay, so the numbers don't lie, and overall we've seen better BG readings and less mood changes from highs and lows, but you still worry about what the A1Cs are going to be.  Well, she scored 6.9 which is her best ever!  Such a nice number too.

Alison has also grown 3 cm in height since February (she's now 3 feet 4 3/4 inches tall) and has put on 8 lbs (she's up to 38 lbs).  Still very slim, but not as bony as she was a few months ago.

Ali was having a lot of itching and redness from the adhesive used to keep her infusion set in place (the tubing inserted under her skin that allows the insulin to be absorbed into her body) and we learned a great tip from one of our nurses.  Tegaderm can be put on the skin and you can do the insertion kit over top of it so that it acts as a barrier between the adhesive and the skin...works like a miracle.

All in all, the pump, while a challenge at times, has been a great thing for our family.

So it has been a while since we posted anything.  We are adjusting to our new "life" very nicely and the overall stress level in our house has gone down significantly.

Alison still fusses over site changes, but things are getting better.

We entered a contest put on by the Canadian Diabetes Association.  Please check out our entry and, if you are so inclined, vote for us!

Vote for What a Cure Would Mean to Me

The Training Wheels Are Off!

So, on Monday, and Daddy's birthday, we were speaking with our pump-start-endo when he told us that he was happy with the ratios we had established and that it was time for us to try on our own.  We still have access to our endo team 24-7 so we'll be okay.

We were all so happy to start sleeping through the night again!  It was a rough couple of weeks on the sleep front, but in the end it is so worth it!  Alison was within target range all day today (between 6 and 11.3) and this is starting to become the norm.  We don't feel like we are feeding the insulin anymore, but that we have a four-year-old who can act four.  She can decide how much or how little she wants at her meals.  She can have an extra snack, or avoid one all together.

It took the first night for me to realize something that makes me a little sad.  Alison decided she wanted to have "A lot-A lot of pancakes to celebrate".  She ate almost double what she has been allowed for supper over the last 19 months.  For some time, it seems, Alison has understood that she couldn't eat what she wanted when and was being pretty good about not complaining too much.  This disease makes our youngsters grow up way too fast.

The whole process of putting Alison on pump therapy has been difficult, but it is certainly the best decision that we've made as a family.  To see her living as close to a normal life as Diabetes will let her is such a wonderful stop gap until a much needed cure is found.