D-Mama and The Flu

Ok, I remember someone saying that when you have a baby there will be nights where you get no sleep and not realizing that they were being literal.  You may not realize that being a D-Mom is like having an infant at times.

Having a child with Diabetes who has the flu is an insomnia enducing event!  You monitor their blood sugar a little more, you let them snuggle in your bed with you (at least we do) and you wake at every cough or snuffle.

Last night was a long one for us.  I was in the midst of a crazy fever when Ali woke up in the middle of a flu induced nightmare.  Alison snored all night and struggled with her breathing.  But in the end, although she's still really sick, her BGLs have been pretty good.  They've yo-yoed up a bit, but we've been able to bring them back down. 

We expected that Junior Kindergarten would expose us to colds and flus, but we were not ready for 5 illnesses in four weeks :).  Not like this, never like this as they say!

Oh! Well!  We'll nap this afternoon and hope that we all have a better go at sleep tonight! 

Long Time No Blog

I can't believe that I haven't put a post up in three months.  Wait, that's not true!  Life has been so busy and exhausting, that I usually find myself asleep before my head even hits the pillow!

So what's been going on since we went camping in July?

Alison started school in September.  I have to be honest and tell you that the hubby and I had many reservations about sending her off to JK.  I thought that I was a completely confident D-mom, but the prospect of sending Alison off on the bus to school all day chilled me to my core!

In our parental struggles to decide whether or not to let Ali board the big yellow bus and start her life as a "big girl" I was lucky enough to have and make friends with other D-moms who had been through it before.  Of special note is Amy (Laughing at Diabetes) who's beautiful daughter was dxd right before starting JK.

With the help and support of many we were able to train the staff at Alison's school how to check her BGLs, give her a bolus, treat a low.  We made step-by-step, picture laden documents, we put ourselves on-call, we worried, we fretted, but in the end, we found our way.

So what's the school experience like for Ali?  For the most part its normal.  She has her own little private area in class where she goes for her snacks and lunch and for her testing.  Alison does miss out on eating with the other kids since the lunch hour the school has implemented is different from when we have Alison eat.

She is, like most T1D kids we've met, extremely resilient.  Alison LOVES school.  She has rolled with the punches and made the very best of the situation.  Her teachers have been very attentive and helpful.  After a month, we've all started to adjust to the routine.  If only we could find a way to keep all the colds that come with JK at bay!

Next step?  Maybe getting the courage to have someone babysit so that the hubby and I could have our first date in almost 5 years...but let's just stick to baby steps.

The Happy Campers

Well, I was worked up for no reason!  My younger brother invited my family to go camping with him, his wife and his three kids.  Growing up we were constant campers - not your traditional tent or camper type either, we were lean-to extreme back woods campers.  My brother has a trailer and a nice tent for the kids, so this is by no way roughing it.


That being said, in the last two years, every new experience that Alison embarks on scares me to my core.  I am mentally and physically more than equipped to handle an outdoors adventure much harder than the one we were going on, but I was so timid.  What if she's hypo all weekend from running around with her cousins?  What if she runs high all weekend and I can't really justify letting her have marshmallows around the campfire?  What if she's hypo in the middle of the night?  She wakes up with night terrors when she's low at night...she'd wake the whole park up!!!


In the end, Ali's BGLs were a little all over the place.  She did have a hooking incident on the playground that lead to a set change.  But she slept in the tent with my 7 year old niece Trin, my nephew Tristan and my brother.

We ended up having to come home early (Saturday evening) because Riley was really under the weather which was a real dissapointment to everyone except Riley, who seemed happy to be in her own bed.

I cannot wait to get Ali back out to the campsite.  I now also realize that Camp Banting is a real possibility in four years! 

Thanks go out to my hubby and my brother for convincing me to go out even though I was anxious about camping - I realized how much I missed it and how much fun it was for my girls.

So, I Think We Might Be On To Something....Finally!

Looks like, since our last endo visit, we might be onto two tricks that work for us (fingers crossed, touch wood).  First, it seems that we have all our basals worked out and programmed into Alison's Ping...except maybe mid morning (she's still coming up low at lunch even when she's not active- we hit 1.9 the other day which was scary).  Two, using her hip and butt for insertion site works best for Alison with the Inset 30.

We have not had any bad insertions since her appointment which is unheard of for us, since 4 year-olds wiggle during site changes!

BTW, the Inset 30 link above is a link to a how-to site change video.  I'm sorry, it is in German, but it is one of the better ones for the proper placement of the feet of the Inset 30, so I thought that the language be-damned, it was worth posting!

Happy Anniversary Mommy

Today is one of those odd days of reflection for me.  I can, with exact clarity, remember where I was at every moment of this day two years ago.  I can recall the smells, the sounds, the thoughts running through my head.  If I think too hard, I can even bring back that overwhelming feeling that the room is rapidly running out of air.

Today is the two year anniversary of Alison’s diagnosis.  Last year I tried to sweep it under the rug.  It didn’t work.  Instead of keeping busy, I was miserable.  This year I decided to take another approach.  Another D mom was blogging about how they celebrate the victories on their diagnosis date, so we thought we’d take that approach.

Alison had a scheduled appointment at the Endo clinic and we went to Dairy Queen after.  Nothing fancy.  In fact, it will seem like nothing at all to most of you on a hot summer day, but, in our house, where ice cream is a luxury, it was akin to a royal visit!

The part of the day that is still replaying in my head right now is a conversation I had with one of our nurse educators and a student that was learning from our yearly panel review session.  I had mentioned how far we had come in the last two years.  How I looked back to two years ago, exactly today, and don’t even recognize the person I was, how much I have grown and adapted.  I said how I really wish I would have known that it was going to be ok.  Not tomorrow, or the next day, or six months down the line.  Not that it was ever going to be normal, or the same, but that we’d find a new kind of happiness and that’s ok too.  He mentioned that the past weekend had been a very busy diagnosis weekend in our area.  So as I go to bed tonight, my hope and prayer is this…I hope that those going through the phase that we were in two years ago tonight will find the grace, courage, hope, love and strength, a little bit at a time.

And as Alison said to me while devouring her ice cream “happy anniversary”

We Walked...Now We Sleep

Okay, so we completed our 3K in blistering humidity!  But what a nice route!  You could not have picked a more sunny day!


The bands played for us!  There were sponsors cheering us on!  There were bouncy castles (yes, Mommy even went through the bounce-ath-a-lon with Alison).  All in All, the Telus Walk to Cure Diabetes was a great day for the Morleys!


Alison brought in about $900, which is far higher than her $100 goal!  She was very happy when the volunteers  at the prize desk were giving her high-fives!  What a great accomplishment for a 4 year-old!


Alison was really happy and is already talking about how we can raise even more money for next years race.  She asked if Riley will be old enough to actually walk instead of being pushed in the stroller (yes, Alison insisted in walking the majority of the route).


Now everyone is knackered and ready for beddy!




Here are some pics from our day:

The Last Push

Hey Everyone!  We're in the home stretch!  This Sunday is the Telus  Walk to Cure Diabetes.  Alison has done a great job fundraising, but we could still do better!  If you were planning on donating you can still go to JDRF  and make an online donation.

For those of you from work who will be at the Richmond Road office this Friday (June 8), Alison and I will be selling paper sneakers to raise more funds for the walk between 8:00 am and 1:00 pm.  We'll be selling the shoes, but we'll also take donations of change in any amount!!!!

There Are No Words Video

(for those who know me well, you'll understand how much this takes out of me)

The Whole World is a Stage...This One is a About the Players

We had planned to have a perfect Saturday all week and it had seemed like the stars were all in alignment.  We had family coming over and it was going to be a lovely afternoon.  Apparently, Diabetes decided to try to throw a monkey wrench in that plan.  In a nutshell, Alison woke up in the "extremely-high-making-ketone" way.  We had to do an unexpected set change.  We had to give her manual injections.  She was not a happy camper.   We kept an eye on her and kept everyone coming over as a "game time decision".  Luckily, my brother is the very best when it comes to my kids and had I called him to cancel, it would have been a non issue, but not everyone handles disappointment so gracefully.  This brought me to today's thought...

A friend of mine recently told me that someone she had felt close to had criticized her about not having enough time for their friendship since becoming a mother.  This seems to be a pretty common.  Some people get told nicely. Some don't get told, and friendships just fade away. 

I had a similar situation.  It happened when Alison was about a year old.  Since some of you who read my posts might share some mutual former friends, I will spare too many details. 

I was, accused, however accurately, or not, of being a poor and neglectful friend.  I was told that since the birth of my child, that I did not deliver what was needed or expected by the other parties in the relationship.  When I wasn't willing to realign my schedule and priorities, the friendship found its way to its conclusion. It is said that in each conflict there are the sides of each party and then there's the truth, somewhere in the middle, so keep in mind that I see myself as, although not faultless, somewhat the victim, I am sure that I am not the only party who felt that way in the situation.

I don't want to make light of this situation.  It was very, very painful for me and took a lot to work through and move on from.  

I have found that since Alison's diagnosis, there are people who are more reluctant around her.  They are less comfortable to be alone with her, even if one of us has to disappear for an instant.  That's okay.  There are even those who have been scared off all together.  That's okay too.  But looking back (I know that maybe my own bitterness causes me to be judgmental) I have to wonder, how would people who cannot accept your limitations at the "best" of times deal with your life during the challenging moments?

So to those of you "new" mommies who find the dynamics of your friendships changing, although I hope it is never as drastic as it was in my case, maybe the friends that you really need at this point in your life are taking centre stage and the ones who are going to take more minor roles are fading into the background for a while for a reason.

Jen, Nora's Mom, from the Blue Heel Society, wrote a letter to Diabetes.  She is a wonderful writer, a brave woman and if she ever is up for sainthood, she'll get my vote.  Here's a link to her letter: Dear Diabetes,.

Jen encouraged the rest of us to write and share our own letters to Diabetes.  I want Jen to know that I tried; God knows I did.  My first attempt was an f-bomb laced diatribe.  My second attempt was a letter of a defiant and threatening nature.  The third time around I just wrote "you can't have Alison" and cried until I couldn't cry anymore.

While my attempt at a letter that I could share with all of you, one that would be therapeutic and helpful, might seem like a bust, I re-learned a lesson that keeps coming up.  My friend Tammy's mother Debbie has told me that the universe will send you the same assignment over and over again until you learn it by heart and this one is taking me a while.  IT WILL TAKE A LONG TIME FOR THE PAIN OF DIAGNOSIS TO EASE, if it ever will.

I keep thinking that my life has moved on.  That I am okay with poking my child with lancets and testing her blood several times a day.  That putting tubes into her body and giving her needles is just the way it is.  That it is what it is.  That the late nights are fine.  That watching my child go through her worst moments while feeling helpless is okay.  Then I will have a day when I get that feeling like I did on the day that we were diagnosed almost two years ago.

The best way I can describe it is this.  When they told us that Alison was in Diabetic ketoacidosis , the room felt like the air had been sucked out of it.  Everyone feels it differently.  But that's what it was like for me.  When it hits me, every once in a while, it feels like that again.

The one thing I would tell Diabetes is this though, someone like Alison, who is currently running around the living room, wearing a cape calling herself Super Ali, is hard to put down and hard to be down around your very own super hero!

What does it really cost?

People always assume that my work insurance covers the cost of Alison's pump therapy, but this isn't exactly true.  We are lucky that in Ontario we are covered by the Assisted Device Program, or ADP provided by the OHLTC.  They provide a grant every 3 months to cover some of the costs of pumping and they paid for Alison's pump outright (they cost from $6-10k, so that was nice of them).  Most insurance companies won't pay for the pump device at all!

The money that comes from the Ministry doesn't cover the cost of all of the insurable supplies and my work insurance does cover the difference, which is great, because the prices are crazy!  If I had to guess, I would say that we pay about $500.00 dollars on insurable supplies each month.  We get $200.00 back from the government (we get a $600 cheque every three months) and the rest we eventually get back from my provider.  I say eventually, because a lot of diabetic supplies have to be submitted manually as they don't have DIN numbers and we have to wait for them to travel, via snail mail, to Winnipeg, for approval, then we get our money back.

Also, there's the list of things we don't get reimbursed for but really need to get by with Type 1.  I am sure that I am missing things, and that maybe those of you with T1D may have more ideas or better prices out there - suggestions are always welcome, but here's my list:

• Alcohol pads about $2.99 for a box of 100; we go through at least 5 a day
• Tegaderm, about $40 for a box of 100 and we go through 2 every three days
• Emla Cream about $40 for 30g; we go through at least a tube a month
• Cotton pads or facial tissues
• Pump battery caps about $25 and they need to be replaced every 6 months
• Pump cartridge caps $25, see battery caps above (which reminds me to order both)
• Pump display protective film about $20-25
• Pump belts and cases, they run about $30 each and we currently have 3.  We find you need many, some for dressy, some for sleep, sports, water sports, some have Care bears etc.  The nicer they are, the better the child feels about wearing the pump.  Plus, we've had some trial and error with some that were not really comfortable.
• A good bag for all your out of house excursions, you can no longer just leave the house empty handed.  Even a trip to the mall includes a myriad of supplies
• Foot cream.  We're working out the price on this one because we don't know what we need quite yet.  Ali has just started to get some cracks in her feet.  Foot infections are a problem for T1Ds so we are on the hunt for the best product to meet Alison's foot moisture needs.  We're not sure that an adult diabetes foot cream would be gentle enough for her tender skin so we're trying out some options - suggestions welcome and we'll let other parents know if we come up with an option that works for us
• Medicalert necklace or bracelet.  The cost will be determined by whether or not you just get a piece of jewelry to alert people of the condition or if you want to sign up for the online service where your health information is kept on record.  it could run you anywhere from a $40 one time cost, to a monthly fee.
• You will need a good kitchen scale.  You can expect it to be worth about $30.  We get ours (and our back up) when they go on sale at Canadian Tire for $9.99.  Yes, you will need a back up.  You cannot feed a person who is pumping without a kitchen scale. You just can't!
• You will need measuring cups and spoons.  We have found that since we use so many of them (again, back to having to be really accurate with Alison's food amounts) we just keep buying more of these so that we don't have to search the dishwasher at every meal and snack.

I am sure I missed things, but you will surely get the idea if you made it through the list before giving up!

I have to admit, I am really glad that the long weekend is here!  We've had a long week.  It has been really busy and we've had a couple of days of hypo incidents (lows). 

One night it took Terry and I a few hours, a couple of wake up calls and A LOT of candy to get Alison stable enough to stop spasming and stable enough to go back to sleep. 

We won't go into how much longer it takes for the adults to settle down after a night like that or how much coffee it takes to make it through the next day.

But like all things, the week and this string of lows seems to have passed and hopefully the long weekend will give us all that little bit of R & R that we need.

Enjoy the holiday everyone!

I don't think I really need to say very much as an intro to this article:

Closing the Loop: Artificial Pancreas

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. 

We're just over a week in and things seem to be going well.  We got the go ahead on Tuesday to stop testing Ali's BGLs at 3 am which is really nice.  Still getting her up at midnight tho.


Last night we had a major meltdown when it came to site rotation.  I used one insertion kit and Alison just cried and cried.  She said that it was unbearably sore.  I took it out and tried another spot but she was still crying like mad and insisting that it was hurting her.  I put some film over it, gave her some advil and she was doing better this am.  Word to the wise, if you plan on pumping, get some Emla cream before hand so that you can nip a situation like last nights' in the bud.


We started doing ratios today.  Ali was allowed her first afternoon snack in over a week and we didn't give her the normal set amount of carbs for dinner that we have been.  I must admit that doing the ratios according to her insulin sensitivity is a little scary for me.  Adding any additional math always is.


We're doing okay as a family.  Our team told us that this would be a very stressful time and that it was not uncommon for parents to be at each others' throats during the pump start but we've been okay for the most part.  This is surprising since exhaustion is the best word to describe our house hold these days.  Riley is the only person getting adequate sleep which means we're hauling our rear ends trying to keep up with her.


Today Alison hurt herself and Riley came over and hugged and kissed her big sis.