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!