Mourning

Even 6 and 1/2 years after Adele's Type 1 diagnosis, I think I am still going through a certain mourning process. The chronic aspect of Type 1 Diabetes hits me sometimes. I have fond memories of my youth, coming and going as I pleased, litterally riding my bike from sunset to sundown, not a care in the world. It makes me sad to think that Type 1 has robbed this from Adele. I even feel guilty when I get up and just go out for a bike ride. With Type 1 Diabetes you can't do that. Everything has to be carefully planned. It's just part of the game, always on your mind, always trying to think ahead to try to avoid highs and lows.

Today Adele and I had the opportunity to speak at the UPS JDRF Telus Walk to Cure Diabetes fundraiser kickoff. Adele was quite shy in front of the big crowd and didn't want to speak. Mr. Norm Robichaud's speech was quite moving. If that didn't encourage UPS staff to step up to the challenge and participate, nothing will in my opinion. Excellent job Mr. Robichaud and THANK YOU once again UPS for choosing JDRF as your charity.

We have an apointment with the Medtronic rep Thursday, May 14th for our pump training. It is really more training on the Continuous Glucose Monitoring aspect of the pump system, but she will also show us various functions that the new pump does above and beyond what are current pump can do. We're quite excited!

We had a good Type 1 game day today. Actually, the entire week was pretty good really. Like I had already mentioned, it's not because we're doing a better job than on the not so good days, it's just that Adele's body seems to be cooperating. I have been having a few problems with her breakfast though. This week she started eating 2 toasts instead of the usual 1. I totally agree with the 2 toasts, since 1 small toast seems like hardly enough to keep her going and ready to learn at school. The problem with the second toast is that it is causing her sugar to go up 1 to 2 hours after she eats. But then the sugar crashes during the 3rd hour. If I give more insulin after breakfast to avoid the rise in blood sugar, she will likely crash lower during the 3rd hour which is not good. Less insulin will cause the blood sugar to rise even more, which is also not good. I tried giving her more insulin via her basal before she wakes up to try and give her an insulin head start before her breakfast, but she was waking up in the 4's - good numbers, but also a bit too low which may get even lower if she suddenly becomes more sensitive to insulin (this occurs very often) or if she decides to sleep in (like on the weekend). Not sure how or if I can fix this? Adding protein to the breakfast menu would likely help, but we're dealing with a typical 8 year old who is a picky eater. She likes bacon, but I'm not too crazy about feeding her bacon every morning...

Here are a few game highlights from this week:

Monday, April 27th, 2009

7:05 am = 8.9 (highish, but still pretty good before breakfast - 2 gluten-free toasts w. Nutella and milk)

8:30 am = 13.3 (high)

9:20 am = 4.2 (she ate 15g carbs, no insulin to try to avoid low)

9:50 am = 3.9 (still went low before her morning snack)

Tuesday, April 28th, 2009

7:00 am = 4.6 (very good before breakfast - 2 gluten-free toasts w. Nutella and milk)

8:50 am = 10.6 (still too high)

9:50 am = 5.0 (before her morning snack, she ate 12g carbs, no insulin)

10:50 am = 4.9

Wednesday, April 29th, 2009

6:50 am = 5.9 (very good before breakfast - 2 gluten-free toasts w. Nutella and milk)

8:45 am = 11.2 (still too high)

9:55 am = 4.6 (before her morning snack, 17g carbs, no insulin)

10:50 am = 5.5

We'll see what the next few days bring... Thanks for reading

When life messes with your game plan...

I've made a few basal insulin adjustments the last few nights that seem to be working pretty good. Last night, as we were getting ready to go to the Dieppe Volunteer appreciation ceremony at Mathieu-Martin, Adele tells us that she feels low. This is less than 1 hour after supper, so a low so soon after a meal is quite unlikely. We test and yes she's low. Her sugar is 2.7. Not sure where that came from? So the rush to get ready for the Volunteer ceremony suddenly changed to a rush to give Adele some much needed sugar. How dare life (going to a Volunteer appreciation ceremony) make us lose our Type 1 game focus! We forced her to drink a juice and eat some crackers. Low blood glucose means sugar starved brain cells which means a very unreasonable 8 year old. "I don't like that kind of juice!" is Adele's reply, while we're fumbling to get her to eat / drink anything at all to litterally save her life. The rest of the day was quite good, but like always the 2.7 after supper is just Type 1's way of reminding us that it's always there just waiting for a chance to bite.

Here are yesterday's game highlights:

Thursday, April 23rd, 2009

1:20 am = 9.1 (good, we aim for a bit higher sugars during the night to give a buffer in case she drops while everyone sleeps)
6:50 am = 9.9 (a bit high, corrected before breakfast)
8:55 am = 10.3 (still highish, gave another 0.2 units of insulin)
9:50 am = 4.3 (awesome value before am snack)
10:50 am = 6.9 (very good)
11:45 am = 7.3 (also very good before lunch)
1:30 pm = 11.2 (highish, but didn't give any insulin - lunch insulin bolus still active, will wait until 2:45)
2:45 pm = 10.1 (going down slowly, I didn't correct before Adele got on the school bus to go to daycare)
3:10 pm = 5.9 (very good before pm snack)
5:00 pm = 6.4 (very good before supper)
6:25 pm = 2.7 (where did this low come from? gave her 20 grams fast acting carbs, supper insulin bolus is still very active)
6:40 pm = 4.6 (out of danger, going up but maybe not enough, gave her a Dex 4 glucose tablet)
7:30 pm = 9.6 (going up too fast?, gave her 0.3 units of insulin to prevent a subsequent high)
8:50 pm = 8.1
9:50 pm = 6.2 (going down too much?, turned off her pump for 30 minutes hoping to create a slight upward trend)
10:40 pm = 7.5 (looking good)
11:05 pm = 9.3 (going up too fast now, guesstimated that 0.35 units of insulin will reverse this, gave her the insulin and went to bed)

Friday, April 24th, 2009

1:10 am = 8.9 (very good for nighttime, no intervention needed, thank you Type 1 gods - we can go back to sleep!)
7:15 am = 7.8 (good before breakfast)

Next Thursday, April 30th, Adele and I are looking forward to attending the UPS JDRF fundraiser kickoff event. Have a good weekend everyone !

Thank you UPS

I had the pleasure of speaking with 2 small groups of employees at UPS here in Moncton today during my lunch hour. The purpose of the presentation was to give a personal perspective of what Type 1 is in conjunction with the JDRF Walk to Cure Type 1 Diabetes on June 7th. Thank you very much UPS for choosing JDRF as your charity of choice and thank you to each individual UPS employee who chooses to fundraise and participate in the walk. Your support is truly appreciated. Such initiatives will enable research to continue and bring us to a cure sooner. Like I said in a previous entry, we have huge plans for that day... I can already picture it in my mind, smell it, taste it and feel it. We're that close... For us, it will be the ultimate dream come true! I can't wait...

Adele's new insulin pump arrived early this week. There is nothing wrong with her old one, but the warranty ran out and our insurance company was willing to pay for a new one. Total price was $7200. Ouch! Thank god for our insurance! I have alot of reading up to do to fully understand all the functionality of the new system. The new pump came with a software package, wireless download capacity from pump to PC and also has Continuous Glucose Monitoring. A sensor inserted under the skin reads blood glucose every few minutes and the wireless transmitter sends this data to pump wirelessly. The pump displays a graph of the blood sugar for the past few hours. The pump does not automatically adjust insulin doses based on blood sugar though. A human intervention is still necessary to manage it all. How is this going to help us play the Type 1 game? It will save Adele finger pokes to check her blood sugar. It will also make it alot easier to check her sugar in public places or during various daily activities. We will also be able to set alarms that will go off if her sugar goes low or too high. We're quite excited! More posts will follow as we move forward with the new system... Stay tuned.

Adele's sugars have been on the good to highish side this week. Her sugars have started to shoot up during the night again though the last few days. Adjustments are necessary I think. I hate making changes in the night insulin doses because it means more testing and uneasy sleep since I am always quite unsure of how things are going to go the first few days after a dosage change. Monday night (Tuesday morning) her sugar went up to 17.3 @ 2:00 am. Last night (this morning) her sugar went up to 18.4 @ 1:15 am. I obviously needed to give her insulin to try and correct both times. 0.65 units of insulin last night brought her down to 9.6 before breakfast (still a bit high). After floating between 10 and 14 all afternoon (this is too high) and finding some blood in her infusion site (catheter that delivers insulin), we decided to change the infusion site even if it was only there for 2 days. The new infusion site brought her sugar down to 7.6 before her bedtime snack, so I think it was a good decision. I'm still not sure how things will go tonight. I haven't decided yet if or what changes I will make to her basal insulin doses throughout the night. I'll make a decision after seeing how stable her sugars are with the new infusion site...

Being unpredictable is the only thing that is predictable.

Thanks for the comments... There seems to be 2 categories of people reading this blog: caregivers like myself who manage their children's Diabetes and friends who want to learn more about the disease. I will try my best to discuss topics that will benefit both. The initial idea behind the blog was to share and explain what we go through on a daily basis to keep Adele alive and able to have as normal a life as possible. It was not to get anyone's pity. I am not a big fan of pity. But if it does comfort you and make you feel less isolated because you're going through the same thing, then I'm very happy to help. If you haven't been chosen to become a Type 1 gamer and it gives you an appreciation of what it really means to be a player in a not so fun game, then I'm very happy for that as well...

Last weekend at our family Easter gathering, Adele ate one bite of Turkey, one bite of a carrot, 2 big scoops of mashed potatoes and some candy (mostly chocolate) for dessert. This doesn't really seem like the best lunch for a diabetic right? The funny thing is that her sugars were perfect all afternoon following the feast. Her sugar was floating in the 7's (7.3 then 7.2 then 7.6) for about 4 hours after the meal with no afternoon snack. Now, a few days later she has a few rice cakes, a banana and some organic (no sugar added) healthy cereal with skim milk and her sugar shoots up to 19.5! So what's my point? Put her on an all-chocolate diet? I don't think so (although Adele would be all for that :-)). My point is that playing the Type 1 game is very, very unpredictable. I was actually reading that a few years back researchers had experimented with Type 1 patients living a very structured life for a week. They went to bed and woke up at the same time each day, they exercised (same workout) and ate the same foods at the same time each day and gave the same doses of insulin. Even given this unrealistic structure, their blood sugar still fluctuated. One day it would be good at a particular time, the next it would be either too high or too low. Why? Because the body is a very, very complex system. Stress, emotions, hormones, genetics... are some of the complex variables that cannot be controlled (or explained by even the best doctors) and obviously have a huge effect on blood sugar control.

The last 2 nights have required 2 blood glucose checks instead of the usual 1. We're somewhat used to getting up once but the 2nd time is tough! It would seem that we've somewhat adapted to chronic sleep deprivation. I'm not really sure what the long term effects of this is... Highlights of the last 2 nights are:

Wednesday, April 15th
10:00 pm = 7.9
10:50 pm = 9.1 (sugar was climbing a bit so I gave 0.1 units of insulin and went to bed)

Thursday, April 16th
12:30 am = 16.4 (too high, gave 0.5 units of insulin)
2:40 am = 19.5 (still way too high, gave 0.8 units of insulin)
6:50 am = 11.2 (still high, corrected and gave a head start on breakfast bolus before eating)
8:45 am = 9.9
9:45 am = 10.2 (before am snack)
10:45 am = 9.8
11:50 am = 7.9 (before lunch)
1:30 pm = 12.2 (climbing a bit but her lunch insulin bolus hasn't peaked yet, so did nothing)
2:40 pm = 14.4 (too high and lunch bolus has already peaked, gave 0.25 units before taking the bus)
3:15 pm = 7.9 (before her afternoon snack)
4:15 pm = 7.3 (playing outside at daycare, gave her 2 crackers to avoid subsequent low)
5:10 pm = 6.3 (before supper)
7:05 pm = 7.0 (before bedtime snack)
8:30 pm = 6.6 (before going to bed, going down, turned pump off for 1 hour)
9:50 pm = 6.9
10:45 pm = 7.2 (pretty stable, snack bolus is gone, so I went to bed - she should be good right?)

Friday, April 17th
1:20 am = 16.7 (way too high, why did she suddenly go up like this? - gave 0.7 units to bring sugar down)
3:15 am = 15.4 (still too high, gave another 0.6 units of insulin)
7:00 am = 6.2

Not sure why her sugar has suddenly began shooting up like that after 11 pm. Must be those complex uncontrollable variables. It's quite the game that we play...

Easter gaming and support groups

Gaming this week had us dealing with some ups and downs. Adele's sugars were OK if I did an average. They were either on the highish side (9 and above) or borderline low (in the 4's right before bed). I couldn't seem to find patterns that enabled me to make changes to stabalise things...

Yesterday's highlights are:

1:25 am = 12.3 (high, gave 0.25 units of insulin)

7:45 am = 16.0 (way too high, I gave her 1.8 units of insulin and waited 1 whole hour before giving her breakfast thinking this would bring her sugar down)

8:45 am = 12.6 (still high, the 1.8 units should have brought her down more than that, she must be insulin resistant for some reason?, she ate breakfast and I gave her more insulin)

9:55 am = 11.4 (at least she's going in the right direction - down)

11:00 am = 6.3 (finally a normal value, she ate a snack and I bolused for it)

11:35 am = 1.9 (she came to see me and said she felt low, I saw she was pale but would not have guessed that she was that low! Values in the 1's and 2's really, really make me sick to my stomach and are dangerous... Adele immediately drank a juice and had a Dex4 glucose tablet)

11:55 am = 5.8 (OK, she's out of danger for now)

1:00 pm = 11.2 (right before Michele dropped her off at her friend's house, after the 1.9 that morning, I was very, very uneasy leaving her at her friends house - her dad does not know how to manage Adele's diabetes)

2:10 pm = 14.7 (too high, sugar seems to be climbing still, gave her 0.25 units of insulin - she's still at her friend's house so we can't be too agressive with insulin)

3:30 pm = 9.6 (ate her snack, bolused with 0.5 units of insulin, still at her friend's house)

5:20 pm = 4.0

The 1.9 was really unpredictable, her breakfast bolus was pretty much gone and she had eaten like a half hour before. Luckily she came to see me and told me she didn't feel good. I'm really not sure she would have done the same at her friend's house given that we weren't there. A simple visit to a friend's house for an 8 year old kid with Type 1 is often a VERY SCARY experience for her caregivers...

And now to the next topic for this post: Type 1 Support Groups. If you're newly diagnosed (or your child is newly diagnosed), I suggest that you join a support group. I didn't always feel this way. At first, I felt as if everyone else but us seemed to find playing the Type 1 game a piece of cake. This actually made me feel worse since I felt like I must be doing something wrong. Adele's sugars surely aren't perfect. I hate comparing numbers (and this is so easy to do with Type 1 Diabetes), but seeing real blood sugar values (including the ups and downs) along with success stories are what has helped me the most. That's why I don't sugar coat anything here. I don't care who you are, every single person playing the Type 1 game has his or her ups and downs which is why insulin is NOT a cure. Type 1 Diabetes was once a terminal disease, the discovery of insulin has just made it chronic instead of terminal. Once I realized that perfect numbers all of the time are just not possible no matter how good of a Type 1 gamer that you are and that we must rather aim for as good as possible, then I enjoyed conversing with others that really do 'GET IT'. Like Christiane said in her comment (April 3rd post), there is some comfort in this...

Spring flu season

We’re happy to see the snow melting at this time of the year. The fluctuations in temperatures seem to breed cold and flu viruses though. Adele woke up with a stuffy nose yesterday morning indicating that she’s likely fighting one of these bugs. This has also affected her blood sugars. The very good numbers we were dealing with on Saturday have been replaced by high numbers :-(

Weekend highlights…

Saturday, April 4th, 2009

1:35 am = 6.1 (turned off her pump for 1 hour)
7:00 am = 4.2
9:10 am = 6.9
11:41 am = 5.8 (lunch at McDonalds, yes we can eat there. We rarely go, maybe once every 2 – 3 months)
1:15 pm = 4.1 (going down way too fast, good thing we checked, she would have surely gone low. Gave her a juice and turned off her pump for 1 hour)
2:20 pm = 7.2
3:05 pm = 8.0
5:20 pm = 5.1
8:00 pm = 6.1
10:00 pm = 5.3 (going down, turned off pump for 1 hour, hopefully she’ll start going up again)
10:30 pm = 4.8 (pump off for 1 hour was not enough, gave her 8g of carbs and went to bed)

Sunday, April 5th, 2009

1:10 am = 7.4 (very good number, but I still turned her pump down a bit (-70% for 1 hour) in case she sleeps in tomorrow morning)
7:40 am = 11.1 (a bit high)
9:00 am = 14.3 (high, I did not correct we were going for a bike ride, I thought the exercise and active breakfast insulin bolus would bring it down)
9:40 am = 11.8 (still high, now I corrected with 0.3units of insulin above morning snack bolus)
11:15 am = 16.1 (still climbing, corrected with an additional 0.55units insulin)
11:50 am = 13.5 (going down, but still too high, corrected again before lunch)
1:55 pm = 6.4 (very good, but will it drop even lower?, ate snack)
4:10 pm = 5.8 (still like 1 hour before supper and her snack bolus was still active, so I gave her 8g carbs to prevent her from going low – hypoglycaemia)
5:15 pm = 15.7 (8g carbs at 4:10pm would not have been necessary, it was too much, corrected before supper)
7:25 pm = 17.7 (way too high, corrected again before bedtime snack)
8:20 pm = 13.6 (going down which is good)
9:15 pm = 15.6 (going up again, flu is making her insulin resistant, gave 0.9units insulin)
10:00 pm = 15.2
10:35 pm = 11.3 (dropping a bit too fast and I really want to go to bed, turned off pump to hopefully cause her blood sugar to stabilise or drop more slowly)
11:00 pm = 11.5 (pump off seems to have slowed down this drop, turned pump back on and went to sleep)

This morning Adele woke up at 13.1. This is too high, so to make sure that it isn’t due to a bad infusion site (catheter that delivers insulin inserted under the skin) we changed it this morning before going to school.

So, the game plan for today is to look at yesterday’s sugar patterns throughout the day and make adjustments to try to keep things in check. Here we go again…

What's in a word...

Until today, I used to hate the term "diabetic". Maybe it was a symptom of me not fully accepting Adele's Type 1 diagnosis, but I interpreted the term as if Adele WAS Type 1 Diabetes. She HAS Type 1 Diabetes, but that's not all there is to her. She is so much more.

So why did my thinking change today? It came to me on a bike ride this afternoon. The feeling of freedom just flying down the road on my bike was amazing. My legs and whole body working together to propel this machine was perfect I thought. I will continue to ride as long as my body will let me. I need to. I am not just someone who rides a bike, I am a "cyclist". That's when it hit me... Playing the Type 1 game is not just something a Type 1 "diabetic" does off and on, it's part of life 365 days a year, 24 hours a day without any vacations. It's constant ups and downs are ALWAYS there. And this is nothing to be ashamed of. Actually, if you're a "diabetic" or a second-hand "diabetic" like I am, be proud! You're a survivor playing one of the most complex games in the world... Not many people could do what you have been chosen to do.

My advice to the anonymous reader who left a comment on the Gettin' it post from March 25th is to hang in there. I won't lie and tell you that it becomes any easier, but you'll slowly learn how to be more effective at managing it. With Adele, her sugars are not more stable than they were in the past, but as she grows older, she now understands that sometimes she needs to drink a juice even if she's not thirsty or not eat when she's starving. This was not the case when she was 2 - 3 years old. Becoming passionate about the cause has also helped me feel more empowered while playing the Type 1 game. This year, I am looking forward to participating in...

1 - JDRF Telus Walk to Cure Type 1 Diabetes in Moncton on June 7th, 2009
http://jdrfca.donordrive.com/index.cfm?url=walk&bp=http://www.jdrf.ca/walk

2 - Accu-Check Cyclebetes National Relay for Juvenile Diabetes - August and September, 2009
http://www.cyclebetes.com/participate/participate.php?pageID=34

3 - Mike's Bike Shop Cyclebetes 200km Ride to Cure Type 1 Diabetes on September 12th, 2009
http://www.mbscycling.org/cyclobetes.php?eventName=Cyclebetes&cbIndex=main

I will never, ever stop doing all that I can do to help find a cure. And we've got a huge party planned for when that day comes... I can't wait.