Monday was a busy appointment at ACH for Carter.  We met with Dr. Ho for the first time and reviewed Carter's blood work from last week.

Test result highlights:

a.  His A1C was 16.5 (this is an average of his blood glucose levels from the last three or four months).  Because Carter was only diagnosed 10 weeks ago, the doctor was not surprised that his A1C was very high and said this is typical of new patients.  We hope that we'll have a much nicer number in August!!!


b.  He tested negative for celiac disease (Thank you, Lord).

c.  His thyroid is functioning normally

The doctor talked to us about trying a different kind of long acting insulin called Lantus.  Lantus is given once every 24 hours and gives the body a very low amount of insulin continuously during that time period.  We then move to giving Carter his fast acting insulin after each of his big meals (breakfast, lunch, supper).  Lantus gives us a bit more flexibility as we don't need to limit the number of carbs that Carter eats.  Rather, he is given the required amount of short acting insulin after each meal, based on how many carbs he has eaten.

Charlie also had some testing done.  Because he is Carter's identical twin, his chance of developing Type 1 is significantly higher than a non twin sibling.  The Juvenile Diabetes Research Foundation provides free screening to blood relatives of children with Type 1.  Charlie's blood has been sent to the USA and there he will be screened to see if his body is developing the antibodies that fight against the insulin producing cells in the pancreas.  If he is positive, the goal would be to delay the onset of full blown Type 1 for as long as possible.  Statistically, he has 40-50% chance of developing Type 1 (that makes mama's heart skip a few beats).

We have not 'graduated' from the newcomer phase of the Type 1 Parent Program and we are not required to be at ACH until August 25th!

Training Complete

On Monday, we will have officially finished all the training we need (as parents) to care for a child with Type One Diabetes.  Hmmmm...I can't say that I feel all trained up and ready to go.  I definitely feel more comfortable than those first few weeks at home when we called the endocrinologist faithfully each evening at 5:30 PM to report Carter's blood glucose readings. Those phone calls have dropped to once a week or longer if things are going well.

The top 10 things I've learned the last 2.5 months:

1.  Just when you think you've got insulin dosages figured out, something changes and you're right back at square one.
2.  Life does go on with Type One and your child is still the same little munchkin he was before.
3.  Sleep is overrated...and whoever said that you'll come to a place that you won't feel the need to test your child's glucose in the middle of the night did not have a child with Type One.
4.  Type One IS NOT Type Two.  Yes, Carter can eat sugar.  His diet is no different than your son/daughter's except that his pancreas doesn't work.  His insulin injections cover the food (carbs) that he eats to make up for this.
5.  Type One Lingo:  A1C, T1D, bolus, carbs, BG, lows, treat, highs, sliding scale, long acting insulin, short acting insulin, CGM, Dexcom, pumps, MDI, ketones.
6.  Pampers really do soak up a lot of fluid.  Especially when you're trying to test for ketones and have a dirty diaper spread out on the counter to find some urine to squeeze out of one of those babies.  Never thought I'd do that on purpose.
7.  Toddlers are so resilient...Carter doesn't flinch for a finger prick and fusses very little for his insulin injections.  Getting blood drawn is a different story!
8.  There is a special place in heaven for diabetes nurses (their patience and positive feedback helped us believe that we can do this)
9.  There is a special bond between parents of children with T1.  I'm thankful to those who reached out to us.
10.  Carter has Type One Diabetes but Type One doesn't have Carter.


We've got a long road ahead of us...full of turns and bumps and lots of gorgeous views along the way.  We love our little T1.

Myths and Facts

In the short two months since Carter's diagnosis I have been asked many interesting questions and have had some interesting suggestions as to how we can control or cure Carter's diabetes.

Here are the goods.  What many people think they know about Type 1 Diabetes and what the reality is.

Myth #1 - Eating too much sugar can cause Type 1 Diabetes
Fact - Type 1 Diabetes is an autoimmune disease.  The immune system produces antibodies and destroys the insulin producing cells of the pancreas.

Myth #2 - Children with Type 1 Diabetes can never eat foods with sugar
Fact - Children with Type 1 Diabetes must eat a balanced diet, like all people.  A T1D person must keep track of the amount of carbohydrates (starches, breads, fruit, sugar drinks, cookies, vegetables higher in sugar) and then inject an insulin dose to cover the number of carbs eaten.  All carbs break down into glucose in the body.  Sugar foods in moderation like everyone should have.

Myth #3 - Kids can outgrow Type 1 Diabetes
Fact - There is no cure for Type 1 Diabetes.  There is research being done on how to delay the onset, but at this point there is no cure.  Carter's pancreas will not produce insulin for the rest of his life.

Myth #4 - Insulin cures Type 1 Diabetes
Fact - Taking insulin helps manage Type 1, but doesn't cure it.  Insulin helps get glucose out of the bloodstream and into the cells, where it can be used for energy.

Myth #5 - Antioxidants, cinnamon, celery sticks and so on can naturally cure Type 1 Diabetes
Fact - There is no cure for Type 1 Diabetes.  The pancreas is not producing insulin thus insulin must be given to control the body's blood glucose levels.

A few interesting questions or comments from conversations in the last two months:

1.  My daughter is addicted to sugar, will she get Type 1 Diabetes?  She might get a lot of cavities but she won't get T1D from eating too much sugar.

2.  Will he have to take insulin injections for the rest of his life?  Yuppers, unless science comes up with a different way to deliver insulin.

3.  You have a lot of diabetes in your family, that's probably where it came from.  Yes, it's true we both have a lot of Type 2 Diabetes in both our families, but that has no impact on whether a child will develop Type 1.

4.  He can't eat sugar anymore, right?  Nope, as long as what he eats is covered by insulin he can eat sweets.

5.  If they're identical twins, Charlie will get it for sure.  I thought this as well, but the endocrinologist says Charlie has 40% chance of developing Type 1.

Some things about T1D you are better off not knowing about.  One of them is an awful phrase used to describe the sudden death of an individual with T1D due to severe hypoglycemia.  I'm only going to blog about this once.  It is probably the biggest fear for parents of children with T1D.

The phrase 'dead in bed' is used to describe the sudden death of an otherwise healthy person with T1D, while he/she is sleeping.  It is very rare, and studies are not completely clear about what exactly happens to cause this sudden death.  It is thought that the T1 experiences a severe low/severe hypoglycemia, resulting in severe brain damage and then death.

You might ask why I would blog about something so morbid.  It's one of those places we don't let our brains go as parents.  When I wake up in the middle of the night I always reach over to feel Carter.  Sometimes, he is sleeping very still, his body feels cool, his little chest hardly rising and in that instant my body has a visceral emotional reaction; my heart drops, I want to throw up...he's gone.  It takes less than a second or two to realize that he's breathing just fine and is sleeping peacefully, but that feeling hangs with me for a bit and I find that the next day I'm just a bit melancholy.

I don't know if that fear or visceral reaction in the middle of the night diminishes as parents of T1D's become more comfortable with the disease.  I assume that it is always there, and I understand why many parents feel the need to get up at 2:00 AM to do a glucose check...just to be sure.

We are T + 7 days since the intestinal flu levelled our household.  Count 5 down for the flu...all five prisoners were taken.

Carter's sugars have been running on the high side since that time.  A colleague and I were talking today and he asked a great question; "What's worse, really high sugars, or really low?"  In laymen's terms;  sugars that drop very low become an acute emergency because if the low is not treated it could result in the child becoming very disoriented, have seizures or at the extreme end drop into a diabetic coma.  Highs on the other hand are not an immediate risk unless they come with those nasty ketones.  If Carter's sugars stay high for several years he could face the long term effects of not keeping his sugars low (kidney disease, vision issues, neuropathy, heart disease and so on).  So while it makes your heart jump to see 25.8 on the meter for a BG reading, unless there are ketones present this number is not a huge immediate risk.  Conversely, if you read 2.3 on the meter, your heart is dropping into your stomach and you're jumping into action to get his blood glucose up tout d' suite.  Fruit juice, jelly bellies, rockets, or whatever it will take to bring his BG over 4.

Keepin' it between the lines!

The boys and daddy came with mama on an overnight trip to the St. Eugene Resort for mama's work.  The boys enjoyed running on the golf trails, checking out the new baby cows across the road, and going inside the tee pees.

Checkin' out the tee pees

Come on Carter.

St. Eugene - old school restored

  

In Like a Lion, Out Like a Lion

The weather stinks!  We can see a few blades of grass around our house but there's still a lot of snow out there.  I vividly remember my first spring break teaching in Invermere (1997).  March 14th to be exact.  That morning I met a friend at Panorama and we skied for a few hours.  Later that afternoon we went for a round of golf at Windermere Valley Golf Club.  It was the best spring break day, EVER!  I could have skied during this spring break, but an afternoon golf game would not have been possible within 500 km radius!

While I was bitter about all the travel that everyone else was doing (Mexico, Arizona, Hawaii, Vegas, Europe and on and on) we did have a nice little trip to Edmonton.  We took our international student and her friend to the 'zoo' at the Bass Pro Shop and then spent three days shopping, visiting, and swimming at West Ed.  The boys adored the aquarium and seeing the 'sea life'.

Hikari & Yuko with the moose

Watching the live fish at Bass Pro

Swimming at West Ed Mall

Watching the penguins at West Ed

Today is the last day of spring break and the first time in all my spring breaks of teaching that it is snowing the night before going back to school.  Ugh!!!

Carter

Charlie

On the T1D front, Carter has done quite well over the holidays.  His blood glucose numbers have been pretty steady and we haven't didn't have any lows (whew).  I should have knocked on some wood before typing this, however, as this afternoon I could hear both boys crying not long after we had put them down for a nap.  Charlie came waddling out in his sleep sac with puke all over him.  Once I went in the bedroom I understood why Carter was crying - Charlie had thrown up on his own bed, all over his brother on his way to getting off his bed (Carter's is right beside Charlie's) and then all over the bedroom.  My first thought...God, please don't let Carter get this bug.  When a child with T1 is sick, it requires testing his glucose levels every 2 hours for the duration of his illness.  My prayers were answered for exactly one hour and a half.  Soon, both boys were taking turns throwing up, crying, wanting mama snuggles.  A call to the endocrinologist was in order as it was our first illness since diagnosis.  Carter's blood glucose was 4.4 so the doctor said we needed to check his levels every 1/2 hour to ensure that he didn't go too low.  His poor little finger tips are blood stained and as I type this he just had another bout of vomiting (daddy has this one covered).  Syringe fulls of apple juice and finger pricks are my plans for the rest of the night.  

We have our next appointment at Alberta Children's Hospital on Tuesday...fingers crossed he'll be feeling better by then.

On the positive side, it gives me two more days before I have to return to work so maybe spring will actually arrive!!!

Spring Break

Who needs Mexico when you've got your brother and a baba of water.

Mexico, Cuba, Hawaii, Europe, Vietnam...all the chatter during the last week of work made me a little melancholy about our travel plans for spring break.  Not that Edmonton isn't a gorgeous city (insert sarcasm), but after 5 weeks of being fully immersed in learning to live with T1D; what it means, what our new normal is, it would have been fantastic to step on a plane and hang out at a warm, tropical destination for a week or two...next year, there's always next year.

Carter is taking on this new challenge with such maturity for an almost three year old.  He likes to help with checking his sugar and the only routine that he tries to avoid are the insulin shots, which have reduce to only one per day because he's still honeymooning.

Mama was taking on the new challenge with quite a bit of anxiety, although that has subsided some with me being home at spring break.  A tropical vacation would have been fantastic, but it's exciting to watch the boys outside riding on their Strider bikes and playing in mud puddles as the weather is finally warming.  All of a sudden, the neighbourhood seems to wake up from the winter hibernation and people are venturing outside with their kids and pets.  I love winter, but would love it a lot more if it only lasted about 6 weeks!

Keeping it Between the Lines

I read a super article this week, written by a 60 year old woman who was diagnosed with Type 1 Diabetes 42 years ago.  She did an incredible job of describing what it is like to live with T1D and how she is always 'walking a tightrope' of keeping her blood sugars between the two lines (going to high or going too low).  I hope that all of my family and friends will take a few minutes to read the article as she eloquently describes what her daily life looks like living with T1D.

http://www.huffingtonpost.com/riva-greenberg/type-1-diabetes_b_4869238.html

The last few weeks have been a bit of a blur.  Our family had our first follow up appointment with one of the diabetes nurses and a dietician at the Children's Hospital.  They took Marvin and I through some more teaching...the extreme lows, calculating recipes, and so on.  Charlie came with us on this trip and the two of them together made short work of ACH.  Nothing was spared...the trays in the food court, the gorgeous fish in the salt water tank, the little girl curled up in the waiting room for the respiratory clinic or the custodian who was trying to mop the hallways.  Charlie and Carter owned that place and ACH will never be the same again.  I wouldn't be surprised if there is a photo of the two of them at the main entrance for the next time we go..."banned from ACH."

I also went back to work this week.  I am sooooo happy that I took the two weeks off after we came home from the hospital.  It gave us the opportunity to wrap our heads around this new way of life and allowed me some time to grief.  Carter's lucky, he's going to be able to manage his disease, but it doesn't make it any less devastating as a parent when your child is diagnosed with a serious illness.

One of the kindergarten teachers, Jane, had students create a gorgeous paper chain of get well wishes that was hung all around my office...what an awesome thing to do.  We also received an awesome Firetruck book that the boys have had us read about 50 times, homemade meatballs (mmmm), toys, and many, many positive thoughts, prayers, and well wishes.  A mama couldn't ask for much more than that from her co-workers :-).

Carter received his Rufus the Bear With Diabetes.  Rufus is a gift from the Juvenile Diabetes Research Foundation.  Rufus has areas that he can receive insulin injections and also wears a medic alert bracelet.

We hit another milestone today.  Since arriving home from the hospital, we have had to call into the endocrinologist on call to give Carter's blood glucose testing results from the previous 24 hours.  The doctor will then adjust his insulin based on patterns that she is seeing in his numbers.  Today, our endo, Dr. Ho said we didn't need to call unless his numbers are low or too high, so he seems to have settled into a pattern.

Baby steps, right?

Honeymooning

It's not what you think.  Carter's glucose has been on the low side (3.3, 3.8, 3.9) for the last few days.  The lows are scary.  It's a place that I don't like my brain to go, but it's also a reality of this disease.  If he goes too low and becomes hypoglycemic, the consequences could be very dangerous.  Hypoglycemia possibilities make rational caregivers irrational.  Waking up during the night to do glucose tests to make sure your lil' man is not too low.  Wondering if the temper tantrum he is having is because he is 2 years old or because he is going into insulin shock.  Not fun stuff.

The endocrinologist says we are likely in the 'Honeymoon Phase'.  The pancreas is rather happy that there is finally some insulin coming into the body and any beta cells (the ones that produce insulin) that may still have some life left in them will start producing a small amount of insulin on their own.  It doesn't mean he's cured, it doesn't mean we caught it in time, it doesn't change his diagnosis.  Eventually Carter's immune system will attack those remaining beta cells as well.  In the mean time, his insulin dosage decreases to compensate for the insulin being produced, naturally, by his pancreas.

On a positive note, Carter has managed to gain 5 lbs from February 11th, when he was admitted to hospital.  He's got a little pot belly going on lol.  We also had a short visit to Strong Start today.  The boys love going to see BJ, the coordinator who runs the Strong Start program in the school I am principal at.

I'm planning to head back to work next week.  It is not without some big time anxiety though.  Daddy does a great job of making sure Carter's dietary needs are taken care of and that he has all of his insulin etc...the mama bear in me is struggling with the what if's...what if daddy doesn't notice that Carter is running low?  Gotta wrap my head around that one...I suppose every T1D parent has to cross that bridge at some point.

The Difference 10 Days Makes

Everyone tells you how resilient kids are and when you are faced with something as serious as Type 1 Diabetes you wonder how your lil' one will respond to all those finger pricks and needles each day.  I must say I'm really proud and amazed at how well Carter has adjusted.  "It's time to test your sugar, Carter," results in him coming right over to the couch to do the deed.  He's even taking to helping out...

The kit - Glucose strip, finger pricker, and glucose reader

Carter pulls out a wipe to clean his hands, don't want to get a false
high reading because he was eating an orange 2 hours earlier and
didn't wash his hands...I wonder if boogers would increase the number?

Carter puts the glucose strip inside the meter...
got this step down pat.

Doesn't even flinch anymore, then helps put away the kit.
He even throws out his own used test strip.

The 'long acting' insulin shot before bed.  This one is a slow release
that doesn't peak until the middle of the night.

Although he is only 2.5 years old, he's already shown an incredible amount of resiliency and I'm pretty sure he'll give T1D a run for it's money.

I'm quite excited about the online support groups I have found; one is for parents of toddlers with T1D and the other is for Canadian Parents of Children with T1D.  I have a feeling these folks are going to provide me with a lot of information, support, and a common understanding of where we're all coming from.  

That said, I've also got a fantastic co-worker who has successfully raised her daughter who was dx at 5 years of age.  Ash is now 17 and doing awesome at post secondary and playing high level sports.  A great role model for Carter.  Her mom was the first person I called when I had a 'hunch' Carter might have T1D, and I'm sure there'll be many more texts/emails/phone calls when I have questions for feel like I'm at the tipping point.  Thanks, DC!

Four years ago, this was us after the Canadian Womens' Team won the gold medal in hockey during the 2010 Olympic Games.  It was incredible being present for such a proud moment for Canadians.

Fast forward four years...T1D has sure changed this Olympic experience.  Yesterday, while the Canadian women were battling for the gold medal, against the USA, I was fretting that Carter had just had his first 'low' glucose test...3.9.  I know that might hardly count as a low, but it was the first one and it made my heart jump and all of a sudden the reality of this disease is becoming more and more real.

That being said, I'd be lying if I didn't tell you that once his glucose level came back up that I wasn't pretty excited about the game ;-).  The win was topped off nicely with the men's team beating the USA this morning in the semi-finals.  It's also very inspiring to learn about athletes like Kris Freeman, an American cross country skiier, who has Type 1 Diabetes and is competing in his fourth Olympics!

Carter's glucose numbers are coming down nicely.  I think we're still in a bit of a fog, or at least I am for sure. Today I did a short trip to the school as my grade 6 basketball team was playing a game.  I could definitely feel the anxiety increase being away from him...Are his sugars OK?  Is he eating?  Is he feeling well?  I have this week and next week off of work so am hoping his numbers will be regulated and I will be feeling more confident about being away from him :-(.

I had a very nice surprise when I popped into my office.  One of the teachers had coordinated a group of students and they made a 'Care for Carter' paper chain and hung it in my office with each chain having a nice thought and get well wish for Carter.  I work with some of the greatest people :-).

'Ash' my protective monkey

Invermere Emergency

Discharge Day

So long, Room 4111

Awesome care by the staff at ACH!

Mama snuggles

Our ride arrives in Invermere

Room with a View

The Infamous Fish Tank

Ash the Monkey and Sara the Sock Monkey

Pavlov's Dog

A co-worker sent me this quote form Pinterest this evening.  I'm not sure that I am strong, but that is my only choice, because I want what is best for Carter and Charlie, and will do what it takes to ensure they have the best care available to them when it comes to their health.


On another note, Carter is catching on to this whole Diabetes treatment thing pretty quick.  A breakdown of his day:

8:00 - Glucose test #1 (with blood from finger poke)
8:00 - Insulin injection 1 - long acting
8:00 - Insulin injection 2 - short acting
8:00 - Breakfast (carb time!)
10:00 - Snack (carb time!)
12:00 - Glucose test #2 (another finger poke)
12:00 - Lunch (carb time!)
1:00 - Nap
3:00 - Snack (carb time!)
5:15 - Glucose test #3 (another poke)
5:15 - Phone call to endocrinologist at ACH to give sugar numbers from previous 24 hours and to get new insulin doses for next 24 hours
5:15 - Dinner (carb time!)
5:30 - Insulin injection 3 - long acting
8:00 - Glucose test #4 (last poke of day)
8:00 - snack (baba time)
8:00 - Insulin injection 4 - short acting
8:15 - bed (zzzzzzz)

The brave little man doesn't even cry with the glucose tests any more (well today, anyways) and the tears, kicks, and screams are lessening with the insulin injections.

He's already figured out that after his glucose is tested he gets to eat carbs..."Mama, test sugar!"  He's even taken to the thermometer that his Auntie Shar gave him in his toy medical kit and is using it as his 'glucose tester'.  The dogs, our international student, all my fingers and toes are glucose tested regularly by Doc Carter.

A Mama's Instinct

Monday, February 10th, 2014...5:30 PM, Invermere, British Columbia....I had a feeling...deep down inside my tummy I had a feeling.

Dial back a couple of weeks.  Carter, aka Twin A, had not been himself.  A little quieter, wanting to sleep more, an increase in his appetite, and the two signs that should have been obvious; drinking and peeing like crazy.

"Don't beat yourself up...Good thing you caught it early...Diabetes runs in your family."  Doesn't change the diagnosis and wouldn't have.

Type One Juvenile Diabetes - "Type 1 diabetes (T1D) is an autoimmune disease in which a person’s pancreas stops producing insulin, a hormone that enables people to get energy from food. It occurs when the body’s immune system attacks and destroys the insulin-producing cells in the pancreas, called beta cells. While its causes are not yet entirely understood, scientists believe that both genetic factors and environmental triggers are involved. Its onset has nothing to do with diet or lifestyle. There is nothing you can do to prevent T1D, and—at present—nothing you can do to get rid of it." (http://www.jdrf.ca/news-and-media/fact-sheets/type-1-diabetes/)

So here we are and this is our journey.  After five days at the Alberta Children's Hospital I know one thing for sure; we were lucky to come home with our little boy.  Hearing "Code Blue, Unit 1" more than once over our stay gives you that reality check.  But it doesn't take away the worries deep down inside every mama's tummy when your child is sick...nope that's been compounded...by how much, only God knows for sure.

Carter's a tough little man.  He's had to be.  He had to put up with his little brother (Twin B) kicking him in utero for 36 weeks.  He's had to learn to share right from day one; a womb (and an awesome one at that - thanks Angie!), snuggles with mama, snacks, toys, and so on.  But he doesn't have to share this...at least not yet.  Although they are genetically identical, Charlie's chances of developing T1D are 40%...how does that happen?  Nature versus Nurture at it's finest.