Blog

2008

May 2008

May 6, 2008 Last night I was changing Liam's site and we had the strangest, most mature conversation of his short life. He had all of the supplies out and ready when he said "Mom, why aren't diabetes supplies just given to people with diabetes?" I said that I wish it was that way but unless their private or public health insurance covered the items they had to be able to afford it themselves. "But what if they can't afford it?" I then said that they would most likely end up in the hospital where it would cost the government a lot more money to care for them. "But Mom, this is what keeps them alive. They shouldn't have to pay to stay alive." I again could do nothing but agree. I then said but we are lucky and your supplies are now covered. "Only until I'm 18 and then what Mom?" I told him that we had 8 years for me to fix that problem. I am a determined person. We will see change. Hadn't I done a lot so far? Lots of people were working hard on this issue. We would get it done.

And so the conversation ended. I was shocked that my son was so mature in his thinking. I was impressed that he was so compassionate. I was sad to see that he was beginning to understand just how scary this disease could be without the right tools and the money to buy them.

May 5, 2008 Today was the first time I really had a moral dilemma about posting a link to a diabetes related story. I get a lot of different feeds that provide me with the research and news sections on the homepage and archived. I always post information. I feel that is one of the jobs of this site--to provide readers with the latest information regarding diabetes throughout the world. Today an article came out that will be posted in the Paediatrics Journal in the near future. It discusses the safety of insulin pumps.

They claim that there have been deaths due to insulin pumps and that they may not be safe for children and teens. They cite issues of insulin overdosing and occlusions as just some of the issues. I personally find this study incredibly biased and misleading. I have decided not to post it here and I will give you my reasons.

First, the article tells parents that they should be watching how their children are using their pumps. As good parents, we try to do this no matter what insulin delivery method is used. We want to keep our children as healthy as possible and do all we can do ensure that this occurs. The benefit of an insulin pump is that parents can download the history of the pump to know if alarms have been ignored, boluses missed or done incorrectly, and how much insulin the child has onboard at a given time. In some cases, the pump may also have a log of recent blood glucose readings.

The article notes 13 deaths in 1500 pump related injuries but much later goes on to state that there are at least 100,000 teen pumpers and that these incidents occurred between 1996-2005. I wonder how many children were not diagnosed properly and died in that same period of time? How many people died of dead in bed over those years? How many people using MDI had issues of injecting the wrong amount of insulin or injecting the long acting amount with a fast acting insulin? Mistakes happen and we do our best to ensure that they don't but they will happen because we are not pancreases.

There is a suggestion that some teens don't know how to properly operate their pumps. I am sure that this could be said for some adults but the fault there is not the pump but lies in the health care system. We need more education if this be the case. Experts have said that there is no difference in learning how to inject as there is to learning how to pump. That is debateable but nonetheless, in either case, patients should be carefully monitored and assisted as much and as long as necessary.

The issue of problems with occlusion is also brought up. No one will argue the danger of a delivery failure when using an insulin pump. It is one of the "cons" of pumping. To help deal with that issue, pumpers are urged to test more diligently than the current guidelines. Pumpers are urged to keep blood ketone strips at all times to ensure that problems are detected as soon as possible.

Sadly this article does not bring up the issues that do face many people living with diabetes. There is the "new" risk of diabullemia, a lack of support for some people living with diabetes, and so many more problems that people and families living with diabetes face.

May 3, 2008 Its walk season again! Our school will be doing a walk for the Diabetes Hope Foundation again in June. We will also take part in a CDA Flame Walk of Hope later this year.

Barrie Ontario's JDRF walk will be June 1st. We have many great advocates who will be participating in that walk including "Gail's Pickers" and a team in memory of Pumper Paul. For those who don't remember, Paul Beckwith died almost a year ago after having a serious low. He is survived by his wife and two daughters who will be walking for him on the first. Without Paul's courage and motivation, I doubt we would be seeing as many pumps covered in our provinces as we are now. He was a wonderful friend and true inspiration.

There will also be a walk held in Montreal on June the 8th. If you are not already involved in a  walk, we ask that you consider sponsoring one of the many people out there who are walking for diabetes throughout North America. If you are involved in a walk, let us know and we will post it on our awareness page.

May 2, 2008 I did it and it hurt! I registered my baby for diabetes camp. This will be his very first time. He didn't want to go but I told him he has to go. He is not a kid to try something new so Mom has to give the push. This time the push is just as hard on me but I won't tell him that!  He was old enough to go to camp last year but we were in Florida. This year we will be home so off he goes. I know he is in good hands. I know most of the senior staff and they know how nervous I am about letting someone else care for my boy. Its not just that...this is my baby! He can't be old enough to sleep away from me. Its all a part of growing up but this mom doesn't want to grow up and let her babies get bigger. Well some days it wouldn't hurt but still....

April 2008

April 29, 2008 Oh yeah, bring on the happy dance!! One complete night of in range numbers!!! From snack time until breakfast he never went over 8 (145).  He never went low. He never bordered on either scale. He was nice and consistent. Oh happy day! Why so excited? Chances are tonight will not work that way. Chances are the next week won't work that way. I allow myself these little moments of joy when they are offered.

As I have said, we have been going through growth spurts which is hell on clothes, shoes and of course blood glucose levels. Its spring and he is outside, on bike, in mud, and basically being a young boy...which is hell on blood glucose levels. He is eating more and more and more. He is trying new foods. And the result? Yep, not always perfect readings. So when I get one lovely night of 11 hours of perfect numbers it is definitely time to do the happy dance!!!

Happiness...take it where you can get it. He is now over 20 (360+). Heaven help me!

April 28, 2008 I have been doing a lot of thinking lately. As I recently told a good friend of mine...that can be a dangerous thing! The truly dangerous thing is diabetes. I realized that as hard as we are working to make strides forward, we are still miles behind and that terrifies me.

What the heck am I on about?  We have been working for years to get insulin pumps covered by the provinces here in Canada. We are making progress. Children in four provinces now are covered. More will follow. Adults are of course our next step. As we continue this battle, technology has advanced which is a positive thing.  Now we are having to look at adding Continuous Glucose Systems to the equation.

Technology is fabulous. I can't wait to get my hands on a very specific CGMS for my own son. I fully expect to pay for it myself but that is my privilege. Sadly not everyone has that privilege. Sadly many people still don't even have the best insulin regimens. Sadly many people still can't test as often as they should. Sadly many people still don't have the educational supports that they need. Sadly many doctors and nurses do not have the time to further educate themselves on much of the advances in diabetes.

In Canada we still have many provinces that do not cover 24 hour basal insulins or rapid acting insulin on their formulary. Patients are put on antiquated regimens of NPH and R do to cost rather than best practice. Patients are still not testing as often as they should because of lack of knowledge of what to do with the information and the cost of those test strips. Patients are still ending up in the hospital to achieve the best quality of care because they can't afford it in the real world. We don't have access to amylin which is the hormone found to work with insulin in gastric emptying. This means that active, healthy people living with Type 1 diabetes are still not getting access to all of the tools that they need to maintain a "normal" body.

In the US there are similar problems. Access to medication and supplies can be a serious issue for many. I receive emails from people desperately searching for help. Its heart breaking.

Then we move to other countries and things can go from bad to worse. There are families in India relying on the kindness of strangers to have enough insulin and test strips to keep their children alive. People in South America coming to the US at their own cost to buy insulin pumps and receive training.

Don't get me wrong, there are also wonderful charities and corporations who are doing some great things to assist all of these people but we need to do more. Everyone should have access to the best of everything! Everyone should be able to test, to inject, to learn.

April 27, 2008 Its been an interesting week. Liam has been up and down. Diabetes Advocacy has also begun to see some changes as advertisers come on board. Our traffic continues to grow on a monthly basis so we are reaching more and more people. More important than all of that came in an email I received. It was from a young lady who had been diagnosed only one year ago with Type 1 diabetes. She never told me how she found this site. She only told me how amazed she was. This was not what she expected in a diabetes website. She thought it was to quote her "AWESOME!!!!!!"

That email truly has made my week and helped me to realize something. I have never claimed to be "normal" --someone once told me it was only a setting on the dryer anyway. This site was created to offer Canadians and ultimately people living with diabetes another source of reliable information. We brought issues such as sending your child with diabetes to school to the forefront of some educators' policy lists. We fought and won the right for those using an intensive insulin regimen to qualify for the Disability Tax Credit without a court room battle. We have assisted with battles to see insulin pump therapy covered by provincial health care plans and much, much more.

I intimated some people because I don't see no in front of me...I have been wrong and tripped over a no now and again but I have found away around it and embraced a new direction. Most importantly, I have come to realize, in part due to this sweet email, that Diabetes Advocacy is unique like its founder. Many organizations care. Many organizations do their best to try and create change. We do all of that and then some but most importantly we add our own flavour and passion. We enjoy answering your questions to the best of our ability. We love meeting with people, sharing stories, and learning new things. We enjoy talking to reps and diabetes company executives and sharing ideas and needs. We love being able to share our opinions, our trials, our victories, our thoughts, and life with you.

Diabetes Advocacy does offer something different. We do have our own niche but we strive to ensure that our readers have the most accurate product information, the latest diabetes studies, links to interesting articles, and inspiring stories about truly great individuals...a lot of whom we are proud to be able to call friends. We are unique but in great company. Its not everyone who can pull off an strapless evening gown, pearls and a tattoo across her back reminding all who look at her that diabetes is apart of her very being.

April 26, 2008 Its a Saturday morning so I let Liam sleep in. I had tested him at 7 and he was high. I corrected and didn't think much more about it except that I just can't win.  A little after 10, I finally try to kick him out of bed. I talk to him. No response. I talk to him some more. No response. He is breathing. I test him. No response as I use the finger that he hates me touching. Now I am starting to get nervous. The meter reading 3.2 (53). Maybe he is lower because he still hasn't stirred!!! I grab the glucose tablets praying that he is going to come around. As I take off the cap he finally moves. He asks why I have been yelling at him. I hadn't yelled...out loud anyway. I was so relieved when I say him awake. I was beginning to wonder if we would be using Glucagon for the very first time. I was on the edge of panic. I really hate this stuff. I shouldn't have to be so afraid that my kid may not live to wake up each day. No one should.

April 25, 2008  What the heck is it? I step out of my bedroom and instead of a trail of bread crumbs I find a trail of test strips! They are absolutely everywhere. I step further and see them on the floor in the kitchen. I head up stairs and find them in the living room. I go into Liam's room and they are on the floor. I check his bed and they are under the covers. I do his laundry and of course...they are in my washing machine. Does he ever put a test strip away? Have they just exploded out of the bottle we keep them in? There has to be a sane explanation right? At the moment I can't find any. I am getting a little tired of this. They have to find a way to leave me alone.

April 24, 2008 Oy! I adjust everything and up all of Liam's insulin needs. Life is good for oh about five minutes. Spring arrives and Liam becomes much more active at school and at home. He starts having lows. I start to adjust bolus ratios...again. I correct a few basal rates. Life is half good...for five more minutes. Cold and allergy season hits. Guess what happens now? Oh of course his insulin needs are going up again. Back to making a few more adjustments. Nights are double digits (well over 180mg/dl). Time to up things AGAIN. Yep, its a freaking frustrating disease. Soon time to go for his blood work up for the diabetes clinic. What will his A1c look like this time around? Only God knows for sure! No rest for the wicked right?

April 22, 2008 Rufus and Ruby. They have been such a part of our lives for so long that I had forgotten how much of an impact these "critters" have had on children. I bought Liam's Rufus about 7 years ago. He has travelled all over the place with us and is shown in a  tree in Ottawa on our support page. I miss my Ruby bear. I gave her away to a young girl about 4 years ago. I had been given numerous bears to give away to children in our area and she was my last. I received a very special letter for the girl's friend and off went my Ruby. Oh well, I will have to look around for her again and by one just for me.

As I was saying, I had forgotten how meaningful these "toys" are to the children who receive them until the other day. A mother was stating how grateful she was for her child's Rufus. The conversation spread to another child who still liked his "Max the pumping Moose" He had received from Medtronic with his pump. I thought of the "Pumpy" that we had been given from Disetronic and the Animas pump that our Rufus still had. Its amazing how these little things are such a big help.

I contacted some of my friends at these companies to find out if they are still around. They all are but we are not exactly sure how to get some of them any more. If you are interested, then please watch the support page as we will be adding them and a link if you can purchase them as well get them. If you  have a favorite pal with diabetes, please let us know and send us a picture that we can use to show how these little things can be such a great source of support.

April 21, 2008 I have dropped the morning basals. Things are looking good until noon. After noon he is still low! More drops to come I am sure. He was 2.9 (50) at supper.  Later he tells me that he did feel a bit off. OY!!! He was running low over night too...or so I thought. Last night he was high and then levelled out. He still was higher than I would like (around 10 or 180) but he was steady all night going from 9 to 10 (160-180). More changes in the air. We will see what one more day of school does before I drop more rates. Oh the fun of this disease. I mean I would be really bored if I didn't have basal and bolus adjustments to make every day!

April 20, 2008 Spring has sprung. The grass is poking its head up. The flowers are beginning to rise out of the earth. Test strips can now be seen in the grass.  They are in the flower beds. Test strip bottles are in the sheds. That must be where they started. The bottle gets lose. As it escapes test strips start magically jumping out. Before you know it there are test strips lose everywhere! They have taken over the lawn. They are in the patio furniture. They are falling out of the car. No place is safe! They have taken over your home inside and out!!!!!

April 19, 2008 What a day. Liam was at a wake-a-thon last night. I reduced his basals for the night. All went relatively well. I picked him up this morning and he headed straight to bed. Great time to test his basal rates...well not perfect but not bad. Sure enough he still was going low around noon. He started to drop. I gave him a glucose tablet and continued to quietly work while my kids slept. I tested him again in an hour. He had dropped again. Small panic but I was so glad he was here with me and my psycho testing routine. I put the juice to his lips and he drank like he was dying of thirst. My heart missed a beat. I hate this disease. I waited 15 minutes and retested. He had dropped again. I am really hating things now! More juice, more drinking like he had never had liquids before.  Thankfully he finally started going up and was fine after that. I have dropped more basal rates...again. Oh the fun!

April 16, 2008 I am wiped out. Dead. Finished. I am going to bed early and praying I will sleep. I can only imagine what Liam's body feels like. Diabetes is driving me insane! First he is low around 10am. Is it a pattern? Well he goes to his father's tonight so would I know and be able to stop it from happening again tomorrow? Yes! Thankfully, he came home first after school so I could make the adjustment. He had been 2.7 (49) at 10 today.

Last night he was 25 (450) two hours after he went to bed! The night before was 21 (380) and I did a site change. Today I changed insulin. I will see what tonight brings and see what else needs changing.

Low during the day. Sky high at night. How much can a body endure??? Its killing my head. I pray its not doing the same to his body!

April 15, 2008 I was given a new perspective on my son's mental lapses in bolusing. I was complaining to a friend who set me straight. He told me that he, as an adult, will occasionally forget to bolus as well. He said that you feel so good on the pump that you feel "normal" and you don't bolus. I never looked at it that way before. I always thought, this is a routine you have done all of your life why are you forgetting. I guess the why is for good reason...he is pretending his pump really is his cure for that window of time. Rather bittersweet when you look at it that way.

April 14, 2008 It just figures that things would happen tonight. We have company and I have given up my room for them to sleep in. I live in a very small house and we have no spare, larger beds. I have taken everything out of my room that I will need for the bed. My mom asks me if I need any other diabetes supplies before her and my step-father go to bed. Nope. I am good to go. WRONG!

They have been in bed for one hour and I test Liam. He is high. Not exceptionally when you consider that he decided to have a doughnut for his snack and we have been driving around for most of the day. On the other hand, he had a blockage alert when that doughnut was bolused for so I am more than a little nervous. I decide to inject the correction and put in a new site. Guess where the sites are? You got it...in my room. I quietly knock and sneak out the tote that has diabetes supplies. Hopefully I didn't disturb anyone. Liam wasn't pleased that I disturbed him but I didn't want him waking up to the stab of a needle or infusion site.

The moral of the story...when asked if you have all of the diabetes supplies that you will need make sure you have everything for all possible scenarios!

April 12, 2008 Things were good for too long. I should have seen it coming but I was complacent. I was in the shower yesterday when I get "the call". "Liam was 18(325). We retested and he was 21 (380). We looked through the history and there was no bolus for breakfast. He took a correction bolus but should we do anything else?"

CRAP! Actually I probably thought a lot more graphic words than that but simply said, no thank you.  You did everything right and yes, Liam forgot to bolus his breakfast. Its a good thing is was pretty low carb.

I have post-it notes all over the house that say "Did Liam bolus?" I was sitting in front of one when he finished his breakfast. We have alarms set on his pump--but I had turned them off over the Easter break and had not realized that they weren't back on. So did I freak out at the 10 year old who as been injecting for food for as long as he can remember? For a change--nope! I did say something but that was it. Did I kick myself for not having the alerts on and not reading my own notes?? Oh definitely! How did I let my guard down? What was I thinking? Liam was high until the evening when he finally went low. Now that must have been great on his young body! More guilt. Bad pancreas! This job sucks. No wonder his pancreas gave up--its a lot of work and you can't let your guard down for one minute.

April 9, 2008 The dreaded lunch time shot. Its amazing how this can be an issue for so many children. Their parents cannot make it to school to inject the child. The child is unable for a variety of reasons to inject or bolus for themselves and the result is making do with an NPH peak and praying it covers a meal. In most cases it doesn't. What are the options?

Almost all Education Acts in Canada state that a teacher is to act as a responsible parent. One would take that to mean that a responsible parent would willingly inject the child or assist with the bolusing of insulin. That is fine but then there becomes an issue of unions and fear of litigation. What if there is an error in injecting? What if the teacher is squeamish about needles?

The answer is that teachers will not deliver insulin and most school policies state that as a matter of fact. It is up to the parents to find ways for their child to receive insulin during school hours. I can honestly understand the education perspective. I know how scary it is to over bolus or inject the wrong amount. We have had a time of eating as many carbs as I could get into Liam because I gave him too much insulin. Its terrifying and if you factor in a parent who may not be understanding at the time....do you really want to even go there?

On the other side of the story is the parent who wants the best care for the child but has to work and can't get to the school to deliver the insulin. They are stuck with having to deal with higher A1c's and desperately searching for a way to avoid a child going to high from a lunch that may not be properly covered by insulin.

I am lucky. Liam can deliver his own insulin. I write down in two spots the amount of carbohydrates he is going to eat as well as the amount of insulin that the pump should tell him he needs to administer. The teacher has always been willing to oversee that these numbers match what Liam puts in and reads out of his pump. They will tick beside my notations to indicate that all went well. When Liam was smaller and on injections I was also lucky. I was a SAHM and could drive to the school to inject. On days that I couldn't make it into school however (usually because my driveway was blocked with snow) Liam would stay home as well. Thankfully that only happened once but even with the incredible relationship that I have with my school it was an issue.

Scary. Its all I can say. Scary.

April 8, 2008 I was looking through my address book the other day and realized one of the benefits of diabetes--friends. I have been involved in a lot of different organization, events and efforts that have afforded me opportunities to get to know more and more people. Its been amazing. I don't just mean the people that you call or call on you and you swap diabetes stories and frustrations. These are people that you call just to see how their life is going. The ones who call and check on you. The ones who are there to celebrate with you and cry with you. I have truly been blessed.

I have friends on the West Coast of Canada who have sat down with me and helped me refocus my life. I have friends in Alberta who have shared laughter and frustrations. I have friends in the US who have encouraged me and held my hand when I needed it. I have friends in Europe who have shared fears and life experiences. It is truly amazing the many things a chronic disease can bring into your life.

April 7, 2008 I was corresponding with a woman the other day and realized that for all our excitement as pump coverage expands we still need so much more. So many people need so much more. I have been invited to become involved in many causes in the US to help those without coverage get supplies. I have thought to myself lately…aren’t we lucky that that isn’t the problem so much any more here. What planet was I on? How foolish had I become just because I have been so lucky?  

This woman had a child who’s readings were everywhere. They were using Lantus, NPH and a fast-acting. They weren’t using a lot of Lantus because it wasn’t covered under their provincial medical insurance. The result? The child spent a lot of time in the 20s (360+) despite the best efforts of everyone involved. I wanted to cry. This poor child may be fine but more than likely will develop complications from being high and spilling ketones so often. The ketones are most likely being tested in the urine as I am sure the province wouldn’t covered blood ketone strips so the child has ketones for hours before they even know about it and start to deal with it.  

This is a child who is denied the best insulin regimens—be it pump or injection. I haven’t even touched on the adults who are doing the same thing—not testing as often, using antiquated insulin regimens all because they can’t afford more. This is sick. It is sad. We have to keep pushing for change. We can’t let this be the way it is. Pump coverage is to be celebrated but even more so is the coverage of test strips and the expansion of formularies to include proven (check our research news for the latest studies), superior insulins. People are dying because of this. We need change.

April 5, 2008  There is just no getting away from diabetes supplies. Its absolutely amazing. I have found strips in every corner of my life. When I dump out a bag I have more glucose, test strips, and hand wash than one person could use in a lifetime. I find sites everywhere. My washing machine is always a source of some sort of diabetes item but today topped it. I closed my fridge door and out popped an alcohol swab! What the heck??? How did that get in or near my fridge? Insulin is kept in there but the alcohol? Life with diabetes!

April 4, 2008 Why do you never, ever, ever buy white or light colored sheets when diabetes lives in your house? Because no matter how careful you are. No matter how cautious and aware you are you WILL get blood on them! I should have known better. All of our sheets for the past eight years have been dark or better yet...red but I had to change. I had to go with cream. I was so careful. I made sure that all blood was gone from his hands after a test. I made sure that I touched nothing. I made sure he touched nothing and then it happened...I dropped a strip FULL of blood onto the sheet! It touched. It left blood. I wanted to cry. I couldn't even blame anyone else. I dropped the strip! Off to get the blood out....

April 2, 2008 What a cool day! Well it still isn't spring here so it is a little cool but more importantly is the way my morning went. I was working at this and that when I got an email from a friend. She also happens to be a teacher at Liam's school. She said that she had asked Liam if he knew that he was on the cover of the local paper's TV guide and he said no. She emailed me to let me know and I ran out to by a paper ASAP. The first store I went to was sold out! I couldn't believe it! They had to know that Liam was in the paper. Okay probably not but nonetheless, I headed off to the next store praying that they would have the paper. They did! I bought my paper and hopped back in my car. I started my engine and that was it...I opened the paper, found the TV guide and saw my son!

It was soooooo neat! I realized that if he was in that part of the paper, he wasn't just local! This story was running all over the province! Every paper that this company owned in this province was going to be showing my son's face this week in their TV guide! His mug was going to be hanging around homes all week! The downside was that it was a story that I wasn't overly fond of but it was a story that others thought was fine. Most importantly it was basically accurate AND was great for awareness. I still think its rather cool but I need a life right?

March 2008

March 28, 2008 Children with Diabetes has been bought by Johnson and Johnson. Its an interesting concept. I am happy for those involved and amazed. What does this say about the way our pharmaceutical companies are going? They have purchased and incredible online support and information company. Are they becoming proactive? Are they realizing the value of people? Johnson & Johnson have traditionally been a very supportive company of diabetes care. Children with Diabetes have a huge mandate and had a very small staff. This can only be a good move for them. Congratulations!

March 26, 2008 Strips and infusion sets are getting worse and worse around here. I have found them in my bed. They are on the floor. They are in the laundry tub. They are in the drier. They are everywhere I turn around. Liam is trying to tell me that they multiply. Its not him...really!

March 25, 2008 Alarms are driving me over the edge! I took the alarms for Liam's pump off. He is on Easter Break and we didn't need the school alerts for one week. I disabled the weekly schedule. I thought life would be good. At 8am I heard the missed meal bolus alarm. What??? I took it off. I went to the computer and zapped it. I manually took it off. I have fought and fought. I am losing...the battle and my mind. I will win! If it takes until Monday, I will have the alarms disabled and some peace in the morning!

March 23, 2008 Its funny how even Easter has changed over the years. Our first Easter was a panic. What do you feed a child with diabetes? Will they miss out on all of the great treats? Will they lose even more of their childhood?

No, but you don't given them many of the sugar-free products either. They taste nasty, have as many carbs as regular products and tend to induce stomach issues. Of course 8 years ago I didn't know that. The carb count of candy from Diabetes Education was dismal. Luckily my kids were used to movies and books for Easter so we did okay. We did have the sugar-free chocolate and gummy bears. They were not to our liking. Thankfully we now have a bigger and bigger list of carb counts for "real" treats and other food (see our Treats section for a variety of food items and their carb counts).

We still don't do a lot of candy because my children just don't eat it. Its the thrill of the hunt not the food itself. If I buy the food then Mom eats it. Not a good thing for my hips! This year we have eggs filled with fruit, yogurt tubes, and gifts fitting of growing boys. Its funny, no matter how old my kids get, they live for the fun of their Easter Hunt!

Happy Easter to all who celebrate and a fabulous day of good blood sugars to all!

March 20, 2008  My cousin recently had a baby. I was showing the boys the pictures of the little guy. Liam is obviously not into babies as his first comment was "that kid will be awfully wrinkly when he gets old" The baby was in a position so that his brow was furrowed. The next thing Liam noticed was the infusion set beside the child's head. He wanted to know why he needed an infusion set already. Was he born with diabetes? Now thankfully the baby is beautiful, healthy and alert. He has no diabetes. I looked at the picture again and saw the pacifier. To Liam it looked like an Inset! He has lived with diabetes for too long!

March 18, 2008 Support is vital to live with diabetes. When Liam was first diagnosed, there was a thank you card posted on the wall of the ward. When we came home, I was given the phone number of the family who had sent that card. I remember one day making that call. It was so great to hear someone else who was going through the same thing that I was. I didn't feel quiet as alone. I have been blessed to be able to return the favour to newly diagnosed families and individuals since.

A year or so after Liam was diagnosed, I broke down and found the internet. There I found another source of support. I found an online group. I found people who understood. I had a problem with Liam eating and vomiting his food after he had his insulin. It was a nightmare as he was passing out at the toilet bowl and meals were nothing but tears and fights. I posted my situation to an online support group and instantly made friends that are still so very important in my life today. The joke is that they are my "imaginary" friends but those imaginary friends have helped me when I was down. They have cried with me. They have helped me whenever they could. They have invited me into their homes. We have even vacationed together. My children have made incredible friends for life from all over the world.

About a year after my online discovery, we were invited to a "family diabetes function". It allowed families of children with diabetes to get together, talk, have fun, eat, and share stories. Again it was so therapeutic. It created and strengthened friendships that are still there today. Ironically, the bond that was created that day was later questioned by a well-meaning gentleman.

Our group became part of a CDA branch and we travelled to a provincial meeting. We were part of a roundtable discussion and we mentioned the benefit of being able to talk to other parents about diabetes, the trials, the frustrations, and the historical moments that only others living with this disease could understand. A gentleman from the Lions' Club suggested that all of this focus on diabetes wasn't healthy and perhaps we shouldn't be doing this. We took his words in stride. He didn't "get it". This was our lives. This does impact us 24/7. It was vital that we had this outlet.

To date we are keeping that kinship alive in so many ways. I still belong to online support groups and Diabetes Advocacy created its own group for anyone living diabetes. I still am a CDA member. I still keep in contact with those parents. We still meet and talk. We are off for dinner in the near future to catch up, to laugh, and to marvel at how things have changed. I guess there are some wonderful things about this disease--the incredible people that come into your life.

March 17, 2008 Today marks 8 years since Liam was diagnosed with Type 1 diabetes. Ironically I had an appointment today with the doctor who diagnosed him on sight. I sat in the waiting room and travelled back in time.

I was sitting holding a sleeping two year old. He was so very cold and laboring to breathe. The doctor was late coming in after lunch. He did house calls and was notorious for being late. A lady was called in before us but she told us that Liam needed treatment first. I took him into a small room. He was bundled up for winter and despite the woollen socks on his feet, they were frozen. Our doctor took one look at him and told me that Liam had "ketoacidosis". He had diabetes. Maybe he just had a lung infection but he didn't think so. He had us rush to the hospital for emergency blood work and chest x-ray. Upon return of the results, he sent us on to the hospital in the next town.

I remember Liam's father driving through a snow storm. I am sure that much of his driving was by memory because the roads were horrid. I didn't pay any attention. All I was doing was rocking with my baby, willing him to live and praying as hard as I have ever prayed. When we reached the hospital I raced to the admitting office. Time seemed to stop. Eventually the woman took me to the paediatric floor. I was shaking and praying we would make it on time.

Once we reached the floor Liam was weighed on a baby scale and found to weigh 11kg (about 22 pounds). He looked so small in the hospital bed. They began to monitor the carbon dioxide in his blood. The next thing I remember was this man walking into the room. He looked like a smaller version of Grizzly Adams. He had a bushy beard, a red checkered shirt, and big, floppy winter boots. Who the heck was this?

This was the man who saved my son's life. The rest of the story I have told many times. It amazes how much I remember and I will be forever grateful for all of the prayers during Liam's time in Intensive Care.

What has changed in 8 years?  Well Mom still tests Liam like crazy but is now waiting to purchase a CGMS for him. Liam no longer is on an NPH regimen but has been using an insulin pump for 4 years. His glucometer now takes only a pin drop of blood and we test ketones in his blood. So much has changed and so much as stayed the same.

Diabetes still lives here. I still worry about complications and doing my best to keep him healthy. I still don't sleep through the night and worry about his going low. I still do as much as I can to advocate on behalf of those living with this disease. I still work as hard as I can for my son and for the child of so many others.

Today is a day that we rejoice. My son is ALIVE! He is silly and he is smart. He is growing to be a wonderful young man.

March 14, 2008 Test strips, test strips, test strips, infusion sets. This morning I found an infusion set in the shower. Its way too far to the garbage can in the bathroom. That was relatively normal for my child. We have worked steadily trying to get him to put medical waste where it belongs. Hard sell for this kid. Mom can't say a lot as I find it hard to stumble all the way to the test strip bottle after a 3am test. The worst came two days ago.

It was the day that my boys had performed in a music festival. They were given a free lunch and there was an extra bag that was given to me. I didn't eat right away and waited until I could get home and reheat things. I got out of my car and piled up bags. My boys were at their father's and I was unloading their "toys". I grabbed the DVD player and movie. I picked up the dead test strip and tossed it into the food bag without thinking that it would land "in" food.

Everything was unpacked. I had my cup of tea and was unwinding. I heated up my "lunch" and began to eat. As I reached the end of my french fries I found the test strip! I couldn't believe it. How the heck did I manage to drop it in my food and at the bottom of my food at that. I had eaten 85% of my meal and not seen it! YUCK!!!! There went the rest of my meal. Mom should have known better. OY!

March 13, 2008 Today the FDA finally announced their approval of the use of the Freestyle Navigator. Personally that is FABULOUS news. Some people have already stated "who cares? Medtronic has had this technology for ages!" They are right of course and they are wrong. The technology behind the two systems are different. I truly do applaud Medtronic for getting their product to market as quickly as they did. I have heard first hand the lives it has changed. I honestly almost went to a Medtronic pump just to have this technology but then I did more research.

As I explained to someone today, I think that CGMS technology will end up being a lot like meters and pumps--you will chose what is right for you. I have heard great things about the Navigator and the vector technology that it uses. It was also originally designed to be used with the Cozmo insulin pump so that works well for us. When it will come to Canada is anyone's guess but I am hoping soon. I would love a full night's sleep...or at least to have the confidence that an alarm will wake me before Liam is in any real danger. I am not anxious to have a new bill now that his pump and pump supplies are covered but it will be worth it.

A study published in Diabetes Care in 2005 examined the differences between Medtronic and Freestyle systems. Under normal circumstances, both CGMS products performed accurately, the difference came in hypoglycemic conditions. The Freestyle Navigator was shown to be statistically better at accurately detecting lows. The information provided by both systems was incredible to see. Despite the differences in detection, both showed tight trends with the Navigator more easily recognizing rapid changes.

A second study again published by Diabetes Care in 2007 showed the accuracy of the Navigator's sensors over a 5 day period. In this case there was no comparison to the Medtronic sensor, which may in all fairness be just as accurate or more so but according to this study there was no significant change in accuracy over the five day period. That definitely improves confidence in these products and their potential. Now will everyone want to wear one more piece of equipment? No, but some will. My son was eager to try it out when the concept was first mentioned. I was shocked but pleased. Hopefully he will be just as excited when the time comes for him to really wear it!

March 12, 2008 Today was a pretty special day for me. Its ironic because it wasn't suppose to happen but in hindsight I am really glad that it did. My children were both involved with the school choir in a Rotary Music Festival. I don't know how widespread these events are (I remember attending them as a child but that was me). In any case, they allow children to compete and be judged by professionals in various musical talents. My children were part of a competition showcasing traditional music.

Originally we were told that this event would take place yesterday. I had planned to go into the next town (where the event took place) and do some shopping etc. The boys decided that if I was going to be there anyway, I could bring them home rather than them sitting on a crowded bus. There was a mistake in the dates but I had still planned to go in and do my chores. Mother Nature had a different idea and it snowed the night before so I stayed home and cleaned up my driveway.

My boys were excited that I had changed my mind and my oldest mentioned that he would not be on the bus going home. His teacher and the school principal asked if I was going to be attending the event--now I had asked them if they wanted me there and they didn't so I was going to get some groceries while they performed. My son told the teacher that I would be there. So much for that idea!

Again, someone knows better than me. My oldest son was playing the accordion and accompanying the choir. This is his last year at this school before going on to high school so that was special in itself. Seeing my boys on stage together was pretty great but things just got better.

As I looked up at half of our school on stage and my two boys there, I had a growing sense of pride. I looked at their faces. I was amazed to see how much many had grown. I continued to scan the crowd and saw something that truly touched my heart. One of the boys was wearing his red diabetes awareness bracelet! I couldn't believe it. He was in his short sleeved school shirt and there for everyone to see was his support for my son. Yes, after everything else, I was definitely getting teary. I continued down the line and saw my youngest child.

I had pulled him out of the auditorium before the performance started to check his bg levels. He was 8.9 (160) and I was happy. On stage I saw him standing there looking just like everyone else. He had his school shirt on and of course his running shoes on with dress pants. He looked like a typical ten year old. His shirt was slightly bunched at the side but he looked in style. How did he get that look? Only a parent of a child with diabetes would know. That was the location of his pump. His site is in his arm right now and the tubing ran down his body and attached to the pump clipped to his waist. The tubing caused his shirt to rise. Bittersweet--the pump was there but better yet so was he!

March 10, 2008 Some people's kids! The conversation went like this.

Liam, show me your log book from school.....Gee you were a little high at lunch time. When was the last time we changed your site? (still no words, now I am handed the pump) Site change reminder for the 8th?!? Didn't you hear the pump beep when you were at your father's?

No.

How could you not hear it? You heard it and you ignored it.

Well there was that annoying noise when I was on skidoo but I got off and turned it off.

Did you check it?

No.

It was your site change reminder!!! Why didn't you say anything when you came home?

I forgot.

No wonder you are high!!! How many days have we had that site in??????????

That became a rhetorical question and I sent him to shower and change his site. Just when I said he was maturing and changing. Silly mom should have known a leopard can't really change his spots. He is still my forgetful son!

March 8, 2008 Less than one week shy of eight years of living with diabetes and my son is beginning to amaze me. I tend to wait on my boys quite readily. I should make them be a little more independent if not more of the team players that I preach they should be. Its just easier for me to simply do these things for them rather than have the patience to teach them and wait for them to learn.

That has become to change with one too many kicks to my butt from people who realize that I am not doing me or my children any good by doing everything. For the past little while, I have been having Liam do his own snack at bedtime. He gets everything out and gets things weighed. I may help a little but I am helping less and less with the exception of calculating the carbs.

The first time he did "everything", he was proud of himself. It took him a bit of time to get everything done but he did it. He sat down to eat and I asked him his reading. He was devastated! He had forgotten to test. He knew I would be choked but it took so much time to get this ready! I tried to be calm--really. I stressed that it still has to be done.

Since that night, he has gotten better. He is slowly getting his own routine down pat. Its amazing to see. My son is scatterbrained but he is smart. He knows exactly how to get others to do things for him and loves it that way. To watch him do things for himself is great. Today I let him know just what a great job he was doing. I told him how proud I was of him and what a great team we were making. He was measuring things properly and telling me the right figures to calculate with and I had his ratios and basals down pat. His night numbers over the past three nights had been perfect. That's a huge accomplishment when you are dealing with a child... at least my child. An entire night in range??? Celebrate!!!

Baby steps but they are happening. I can only handle baby steps anyway...you may not know this but Mom is a control freak.

March 7, 2008 Who says it doesn't pay to have diabetes? Who says it doesn't pay to advertise that you have an insulin pump? As I have said before, we were recently featured in three newspapers coast to coast. It was great to get the word out there about insulin pump therapy.  It made more people living with the disease aware of the options that they have. It also elevated my son's "celebrity" status.  My children do not suffer from low self-esteem so really this wasn't needed but I guarantee that it was appreciated way more than I ever realized.

My house was in its usual state of chaos but I was actually trying to win the battle. I had my living room pulled apart. I was washing floors, dusting, and doing laundry. I have a short attention span so all of these things are going on simultaneously. I also keep looking outside at the sun glistening on the ice skating rink that was once my driveway. I knew that I was going to have to get outside soon to make the most of the sun and put an end to the rink.

There was a knock at my door. I never have company but if I do its always when I am in the largest state of chaos possible--hence the knock at my door. There is an older gentleman standing there with something in his hand. I know him to see him but that is about the extent of our relationship. He asks if Liam is home and I explain that he is at school. He asks to come in and of course I let him in. (I am a terrible hostess by all accounts but I certainly never am rude).  Once in the house, he explains to me that he read about Liam in the local paper. He has the article in case I didn't have a copy--how thoughtful! He opens the bag he has been carefully holding and reveals a sweet little handmade dory. 

I was amazed by its detail and told him so. He then explained to me that he had made this boat for Liam. It was handmade out of paper with only a few small pieces of wood strategically placed. I was stunned. The boat was light and detailed. Made of paper?? Impossible. We spoke a little longer and he made the treacherous trip home over the ice while I felt horrid for not getting outside earlier and saving this poor man from crawling across the ice on his hands and knees for fear of breaking something.

I had a meeting at 3pm and I didn't want the boys to touch the boat without understanding its significance. I picked it up until we were all home. As I went to prepare dinner, I put the boat on the table in Liam's spot. I called him to me and asked him to look around. He thought I wanted to tuck the tag in the back of his shirt! He looked again and saw the boat. He was amazed! It was for him? Someone made this just for him? Why? I told him what the man had told me...he thought he was very brave enduring all his does to live with diabetes and he wanted him to have this boat. I told him how it was made and his awe grew. He was so very proud of his boat. Where could we keep it? How would we keep it safe? Could we have a case made for it so he could mount it on his wall?

Wow! This was my son who rarely reacts to anything? Of course we will keep it safe and yes, at one point I will try and have a case made for it. Liam had me take a tonne of pictures of him with his boat before he again put it safely away. My oldest son had seen the boats before and knew what work they entailed. The maker was his teacher's older brother. They had two such boats in his class. They might be similar but they weren't the same. Liam's boat was extra special. It was made for him and signed on the bottom "March 7, 2008. To a Great Boy. From Gerard." Perfect. Just perfect!

"To a Great Boy"

March 6, 2008 I recently asked some people in the industry how they deal with adults with diabetes and how we ensure that they have access to pumping technology. I had some interesting answers and some that remained the same. No matter how big or small the company was, there was a realization that people need to understand pump therapy. Books like those by John Walsh and a booklet called "Better is Better" are very popular. The latter I am told is a very biased pro-pumping book. It sounds great!

Word of mouth is important as are Diabetes Expos. The value of venue events seems to depend on your budget. I honestly wonder if all events give you the same bang for your buck. Live Smart Expos are put on by the CDA and tend to be geared to a Type 2 audience. That isn't a bad thing. It is important for Type 2s to know that they too can benefit from an insulin pump but so few doctors are willing to go the distance for Type 1 pumpers, will they be supportive of a Type 2?

That brought me to another question and again a common answer...younger doctors tend to be more pro-pumping. Older doctors lived through the years of lunch box sized pumps and don't see the benefits. Younger doctors are more aware of "smart pumps" and their incredible benefits for patients with diabetes.

The common theme is still that you need to get the educators on side. My question would then be, is there an educator's bias? Are educators able to say, here are the pumps that are out there, here are the pros and cons, here is your situation, now let's tailor a pump to your need.  I know of one company with that as their goal. That is of course part of our goal at Diabetes Advocacy as well. We will tell you what is on the market and hopefully you can see what works best for you or your loved one.

March 5, 2008 Why do highs only happen late at night? Its just like stubborn lows. Diabetes is the most hateful when you are dying for sleep I am positive!

Last night we had homemade pizza for supper. Liam said "bolus as pizza right?" I said "No, my pizza isn't very fatty so let's just bolus it as supper". Possibly the first mistake. Readings were good, maybe Mom was right. Snack time came. Readings are still looking good. He has is standard snack--milk, an orange and an eggo. We bolus. Life is good. I am getting ready to go to bed. I test Liam. He is 19.4 (350). What??? Okay he didn't wash his hands after his snack. Go and wash his hands, retest and life will be good. Retest. 19.4(350). Insert a few four letter words! Okay, check tubing for air. Yep, there is air. Okay get rid of that. Bolus the correction. I was staying up for another hour anyway so no biggie.

Test after midnight. Reading is now 20.5(370). WTF????? Oh yeah I am happy. Recheck tubing. Just know that I am going to have to inject and do a site change. Maybe things will get better. I'm tired. I bolus. I pray. I lay in bed for an hour when I hear the pitter patter of feet. Liam is up to use the washroom. Mom has failed! He is feeling the high. Crap! Yell out to him to test. I see him stumbling towards my room with a grim look. Super crap! He is still 20.5. Okay, get out a new site. I find the syringe and insulin. We get down to work. The correction is injected. The site is changed, my alarm is set.

Mom goes back to sleep for a few hours kicking herself for screwing up to begin with but thankful he is not ketonic. I am having visions of him throwing up and just feeling the worst ever. At 4:30am by alarm goes off. I test him again and he is 5.9(107). Breathing! Alright we have a winner!

Back to bed. Reset the alarm for 7. Life is good. Well sort of....I hear Liam coming down the stairs. My room is very bright. What time is it? Almost 8am!!! Holy cow! The boys have to get on the bus in a few minutes! Panic mode! Liam tests. He is up to 9 (165). They eat, bolus, get dressed, and hit the bathroom in record time. They are gone before I have managed to completely wake up. I check my clock. What went wrong??? It turns out that if you set the alarm, you also have to turn it on! Who knew! I think I need a bit more sleep!

March 1, 2008 I am still not exactly sure why I like the alarms on Liam's Cozmo. He is very strategic about when he notices them or more importantly, when he acts on them.  Last night we went out for a nice family evening...well some of us enjoyed ourselves, Liam forced himself to stay awake but that's another story. As soon as we left Liam's pump had to have alerted him that he needed a site change. I wasn't told. We came home and he headed for a shower. Still no mention of a site change and a shower is the perfect time for site removal...hence the many dead sites that I find in my bathroom. I let him stay up a little later than normal but they have to get up early to go somewhere with their father so its vital that they head off to bed. When I tell Liam that its time to go to bed, he suddenly remembers his pump. He brings it over to me and I ask "what?". Well it turns out he needed a site change but we hadn't done it. I have to get up early to get the boys off so I am not about to do the site change at that point either. We leave it for the next morning. Not a happy Mom changes the site this morning after breakfast.

The boys get ready to head off and Mom does everything not to worry. You train the kids. You train the caregivers. You pray a lot! Liam is heading out the door with his toys for the weekend...DVD player to get him through the day of driving and other items. He also has test strips to bring over to Dad's. I am reminding him to set his travel basal for the trip. I am praying that someone remembers his test kit. He has strips. He has glucose tablets in his pocket. No Dad is not an idiot and has been dealing with this disease for a few years too but I am still worried. I am not in control. I am not packing things...like I haven't been caught up in things and forgotten items before too but I get nervous. I am sure all is fine. I haven't heard any panic or question phone calls. All seems fine. These are the times when I think maybe I should invest in a cell phone for my kids. No...Mom needs to let go. Mom needs to have faith in others. Mom needs to trust Liam to occasionally remember his head or at least his diabetes care. 

February 2008

February 28, 2008 I realized today the impact that diabetes has on simple things. I know, you are only clicking in now??? I don't usually let my kids have anything to eat when they come home from school. The main reason is that once upon a time we ate at a pretty set time. Those days are pretty well gone. We now eat when we get there or get hungry. One of the things that has changed therefore is  often there is a desire to have a small snack when they get home.

Because diabetes lives here we don't just grab an apple and run. We test, we weigh, we calculate carbs and then Liam eats. Today was one of those days. Dinner was going to be late. The boys decided that they had never eaten before and HAD to have something to eat. My oldest grabbed something off the counter and  headed off quite happily. Liam had gone to his room to play. I felt guilty. He deserved a treat too. I called him down. He washed his hands. He tested. He corrected. He weighed. He bolused. He ate. I wish he could just eat and run like everyone else but that is not the hand he is dealt. If I think it sucks now and then I can only imagine what its like when that truly is your everyday existence.

February 27, 2008 Today I heard something really great. There is an MPP in Ontario who is putting forth a bill that would protect the rights of children in school. That has some really interesting implications. Can you imagine if we had a law that protected the rights of our children with diabetes in school? Their right to test, to inject, to have supervision? I know those rights exist under almost all education acts. Teachers are suppose to act the same as if they were a parent. Sadly there are too many unions and other issues that get in the way. Education, awareness, information. We will get there.

February 24, 2008 Who says it doesn't pay to get your message out in the newspaper? Today I was reading through a list of articles on diabetes. I came across a title that took me back "Newfoundland and Labrador provides insulin pumps for kids; B.C. still refuses to do the same".  What the heck? This couldn't have to do with the stuff we have had in the papers could it? I clicked on the link and began to read..."A recent story in a Newfoundland paper, the Western Star, features the smiling face of Liam Marche with his government-supplied insulin pump."I only know of one more Liam Marche and he doesn't have diabetes. The fact that they go on to mention his mother Barb was a dead giveaway that they were talking about me!

This was great for more than just one reason. To have your story reach the other side of the country in incredible. To live in Newfoundland and be born in BC where the story was run is just an extra bonus. I have to admit to being very proud at the moment. Not since we won the DTC have I felt quite the same sense of accomplishment. I haven't got pumps for everyone who needs one but I have made the issue of provincially funded pumps a national issue. Wow! I mean it always has been a national issue but we have people talking again. We have the press asking Health Ministers why their provinces are falling behind in their quality of care? Awesome!!!

February 21, 2008 Thank you so much to all of those people who wrote to me about the article in the newspaper that I was not happy with. You showed me the things that I didn't see in the article like the fact that he did manage to show how much work is involved in diabetes all the time--even during and interview.  Thank you for saying that I didn't sound like an ogre but a real parent. And thank you for reminding me that I do bring a voice to this disease. I try to bring an accurate and real voice. I want people to understand what this life is like. I am not looking for pity. I am looking for understanding, respect and help to fund a cure.

This is a costly disease in so many ways. It is important for people to see the positives and where positive changes can be made--increased education can equate to better control. Better control can equate to reduced risk of complications. Increased access to devises and medications can equate to better control. Better control can make it easier to work and feel a sense of confidence in one's abilities and worth.

February 19, 2008 Our second article on the provincial pump program appeared in the newspapers today. I was not overly impressed. My oldest son laughed and laughed. The story begins with "Ten-year-old Liam Marche eyes the plate of homemade chocolate chip cookies, which have been placed on the living room table. They've been brought out for a guest, but Liam makes eye contact with his mom, Barb, and whispers something into her ear. Immediately, she lets out a stern "no," but he persists." I did tell him no cookie and he did get one at the end of the interview but stern? It sounds like Liam is underprivileged and I am the mean parent. Things don't improve with "Ms. Marche says to go weigh a cookie and bring her a calculator. Liam jumps up quickly, grabbing a cookie from the top of the pile. He runs into the kitchen, and almost instantly is back in the living room, with a calculator in hand. He tells his mom the cookie's weight. After a quick calculation of the carbohydrate count in the cookie, Ms. Marche reads out a number. Liam adjusts the levels of his insulin pump and bites into the cookie." OY!

My child is not a starving savage. The calculator is to figure out the carb count by using the carb factor based on the cookie's weight. This just sounds like some sort of a smozzle of words. Things just continue to go downhill.  He discusses Liam's diagnosis and suggests that Liam some how grew to have diabetes. Not. Liam was a normal child. When he got sick I blamed two year old molars, flu season, etc. When he was finally diagnosed he was 11kg and fighting for his life but I just don't know about the rest of the tale.

He makes it sound Liam's father now has pump insurance. He made a mistake in his punctuation so that my husband, at that time, became "my husband at that time had no insurance." If either parent had insurance coverage, the pump program would not apply to Liam.

And this statement?? Oh please tell me I don't normally sound this horrible! ""We were quite happy in April when the budget announced they would be providing for insulin pumps," says Ms. Marche. "You shouldn't have to go and beg, borrow and steal to get what is the method of delivery for your child, an adult or anyone." Yes, you should have to beg and borrow to get the "best method of insulin delivery" but steal?? I wouldn't suggest anyone steal.

The article is a full page--which is great for awareness. The writing is more of the above. Misquotes, mistakes, and me sounding like a fool. Tight control equals no complications? I would never say that. Tight control equals a reduced chance of complications. Oh my. I guess I can't win them all.

February 18, 2008 What is tight control and what is too tight when dealing with a child? Liam was perfect for five minutes and my five minutes are now up but that is nothing new...he's a kid. I have been seeing some highs at nights but I haven't been sure if it is human error or basal error. Last night he was 7.6(137) two hours after he went to bed. Nice reading. Happy but slightly nervous mom. What happens over the rest of the night? Well by 3am he was up to around 10 (180). Not the best but I left it to see what would happen next. Four hours later he was up to 11.4 (205).  My dilema? Well 11.4 waking isn't ideal. He "should" be 7 (126) or less.  He only went up less than 2 mmol which is a good thing. I know where I don't need to make a change but should I up things making the 7 a 10? Possibly but more testing before I decide. Oh I love the rollercoaster called diabetes.

February 15, 2008 We are one month away from the 8 year mark and I think I am beginning to hit a wall. How do people do it that live with the disease? How do I get upset with Liam for forgetting? I hear that alarm at 3am and don't want to get up. I wake up at 5 and have to force myself to test. I am okay during the day but nights? I want my nights back. How scary and selfish is that? I am scaring myself. I know how important night testing is for us--for Liam. He does not wake for lows. I have caught them before. I don't want to deal with a low at 3am. Again what kind of a parent is that? I will continue. I will work through this time. There is no respite for Liam so why should I be selfish? I spend my time telling him that its my job to keep him healthy, to test him while he sleeps, to keep him and his brother as safe as I possible can. I can't give up now. I won't. I will look after my baby and keep him safe. I will set a good example and help him to develop good habits. I WILL give him a healthy body when he is ready to take over his own care.

February 13, 2008 I was once told that you could feed a child with diabetes the exact same food for a week straight, tied to a chair, using the same amount of insulin and you will still see different numbers every day. I am living that! Okay so I don't have him tied to a chair but my son goes through days of eating the exact same meals. His snack for the past three weeks at least has been one Eggo with low carb syrup, milk and an orange. His readings have gone from Mom being nervous that he would drop, to mid range, to perfect for Mom's comfort level, to sky high last night and blood that poured out of his finger like I had hit a jugular vein! It could be air. I thought the site was going. It could be adrenaline left over from his speech in front of the school yesterday (he got second place...very proud mom!!). Whatever it was, OY!!! We will see what the next two nights bring and see where we go from here. Have I mentioned how much I love the rollercoaster ride called diabetes lately?

February 12, 2008 Who says big companies don't listen? I have been dealing with a pump company on behalf of a group of Canadians who are not happy with the customer service they have been receiving. There has been a very serious communication breakdown on a variety of levels. Yesterday I spoke with the president of the Canadian subsidiary. He was very nice to deal with. He wanted to truly understand both my concerns and the concerns of other Canadians. I know, that's his job but it is also smart. Again, I know, he didn't get his job because he is not smart. It does take a good businessman and a decent human being to listen to the consumer and truly listen. He has done a lot of behind the scenes work on the issues I presented before we spoke--including a business trip to further see how best to deal with some of the problems. He has taken the concerns and will be developing a plan to address them. He has even suggested that he will work with others like me to ensure that they continue to keep a pulse on the Canadian consumer. I like that but I like companies that are approachable and honest. We do have a few!

February 10, 2008 You may have notice a new logo on the pages on Diabetes Advocacy. We are now certified Health information providers! We are not doctors or health professionals as you well know but we are a legitimate website providing legitimate information. I never suggested that I wasn't but to be certified with other great diabetes websites means a lot to me. I was ecstatic when we were given our notice that we met the criteria and were "official" of sorts! We try to maintain the highest of ethical and moral standards and this just proves it. YEAH!!!!

February 8, 2008 Every year my children are involved in a "speak off". They are required to do a speech in front of their classmates and then the school. They both HATE public speaking. They write great speeches but do not like presenting. Last year Liam got so nervous that we had to pull him. His BG levels were through the roof. Nothing would bring him down. He was living on pure adrenaline. Once he was told he didn't have to do it he magically came down.  This years I was nervous. What was going to happen? He had his best presentation yet. It would be a crime to not present it.

At 10am, I get a phone call. Liam is 1.9 (35)! Holy crap! His teacher concurs. He is greying as we speak and still shaking. I ask if Liam can wait until the afternoon before doing his presentation because he will be out of it. The teacher says no worries there. His only concern is that he gets above 1.9!!! Actually Liam had already done his presentation and done quite well. (In a class of grade 4, 5 and 6 he was chosen to present in front of the school with 2 grade 6s) They had tested him before the presentation and he was 6.9 (125). I guess that was the adrenaline because the 1.9 was after. Scary crap!!!

February 6, 2008 If I say it out loud will it jinx things? My baby is growing up! Scary but after all of the times I have lost it in frustration and all of the times I have repeated those words...but did you bolus?? it seems to be paying off. Yesterday I was in a hurry in the morning. The boys had to be sent off to school. I had to prepare to head out and do some work of my own. I cooked them their breakfast. I ate my breakfast. We all got ready to head in our own directions. It was almost time for the boys to go to school when Liam cornered me in the bathroom. "Mom, did you bolus my breakfast?" Nope! Holy crap! How did I forget that? Easily but still. Way to go Liam for remembering and yes, I really did say that. I told him how impressed I was that he was being so responsible when it came to his care. We bolused and Mom was left feeling proud.

This morning comes. Again we have breakfast. Again I have a list of things a mile long to do. I am making lunches, counting carbs, and slowly thinking about waking up. Liam comes up to me a little sooner this time. "Mom did you bolus my breakfast?" Crap! Nope. "Wow you are really impressing me! You are doing a fabulous job at being responsible and remembering to bolus. I am really proud of you!" and I was. Its great to know that someone is on the ball. I usually am but we all have our off days. The problem was that Liam was always on off days and only occasionally hit on day.

I can hear the question now....but if he is so responsible, etc, why are you bolusing his meal? Because I can. Some say he is spoilt. I say he has a lifetime of this crap and I will give him a break when I can. Usually I tell him how many carbs are in each food item and together we add them up and input it in the pump. Liam then tells me the amount of insulin the pump gives him and I okay the bolus. Some days he just hands me the pump and says go for it. One day he even handed it to his brother who surprised all of us, including Liam, by bolusing him. We all need a break now and then. When he gets too lazy I tell him to do it himself because I am busy but for the most part I help and I teach as often as I can.  Its what mom's do.

February 5, 2008 People have asked if I let my child know about complications or the hard work that it is to keep him alive. The answer is yes. I don't do it to have him think its a burden. I want him to understand how important he is to me and his family. I want him to understand that its my job to hand him the healthiest body possible when he grows up. To do this requires a lot of work and at the moment, its my job because I am his mom and I wouldn't have it any other way.

Yesterday we had a reporter come by. He was following up on a letter that I had sent to our Minister of Health thanking him for the new Insulin Pump program in our province and reminding him that this was the first step.  He asked about the benefits of the pump. We talked about complications. Liam was in the room for the interview. The reporter asked Liam if he watched his cholesterol. Liam said yes. His latest is that he cannot have gravy because its bad for his cholesterol. "Mom, what would Sheila and Helen say if I ate gravy and my cholesterol went up???" They are members of his diabetes team that he has worked with for the past 7+ years. Its cute but he is quite serious.

The reporter asked about dietary restrictions and we explained that we do try to eat healthy because it is important for everyone. He said "the whole family??" I said of course. Liam eats what we eat and visa versa. Liam then proceeded to eye the cookies that were put on the coffee table for our guest. They are homemade cookies and I tend to reduce the fat and sugar in all of my recipes. Its funny, the reporter never paid any attention to Liam testing before his cookie (or the fact that it had to happen) but he was fascinated by the concept of me knowing the carb factor of the cookie and having Liam weigh it to get an exact carb count.

I have no idea how this interview will play out into an article. We seemed to go all over the place. I pray the gentleman learnt something about diabetes and that learning will spill over into his article. If not, well a second paper is also doing an article based on my letter. I have confidence in their work. The last time they did this, they basically just rewrote my letter in more generic terms and said "Ms. Marche says...." I can live with that.

February 2, 2008 I guess it had to happen one day. I finally upped Liam's carb to insulin ratios. They have been the same for years but it killed me to do it. It freaked him out this morning when he bolused his breakfast and he needed double digit insulin. The even scarier part is that it worked. He actually needed to have his basal rates upped by .1 of a unit per hour--that may not be a big deal to many but usually .05 works for him. Add to that the upped ratios and we finally have readings back in range. I think my baby is growing. That is scary in itself!

Things still aren't perfect but they are improving. After close to 8 years I still live our diabetes life in 4 hour time slots. We have the seven to two time slot down pat for a day...hey that's almost 7 hours of success! Now its that ugly, icky 4am time slot. I hate fixing the that time. It means no sleep, scary nights but having a healthy child is worth it.

January 2008

January 31, 2008 I am losing the battle. We have been fighting high mornings for years. For some reason I had forgotten how tough the fight can get. What a fool! I have upped basal rates. I have upped carb to insulin rates. I have upped basal rates yet again. It could be a growth spurt. It could be diabetes. Its definitely my nerves...they are going fast! His teacher is well meaning and telling me that Liam is high. I am looking at his readings here and they are okay then BAM! We are back high again. After school...low. Ah yes, the wonderful rollercoaster ride also known as diabetes. Its really killing me. I hate to think what it does to my child's body.

January 29, 2008 I think I spend too much time thinking about diabetes. Its bad enough that its everywhere in my life. When I do laundry, I find at least two test strips. When I shower I find infusion sets. When I eat breakfast I find a lancet. Last night when I went to bed I even dreamt about it!!

I have hit a new high? I don't know if that's what I would call it but I dreamt I had lost Liam on a boat. I was searching everywhere. As I was searching I ran across a family who had a child with diabetes. They were complaining about some sort of reaction he was having to his insulin. I stopped. No I did not know these people but being me I stopped. I suggested that they try a new brand of insulin. Some people have more luck with one company's formulation over another. A quick insulin lesson and I was off to find my son again. Oh this is almost ridiculous!! Yes, I did find Liam. That second cell phone I have been thinking of having hooked up paid off. I found the number and tracked him down. I then headed off to stop him from having the french fries and gravy that a well-meaning family member was about to feed him...the cholesterol!!!!!!!!!

January 25, 2008 "Liam is high but he has been acting normally.  There seems to be no way to get him down. He is just high, high and still high. You would never know it by watching him though. He definitely doesn't seem high."

Now if you didn't know that we were talking about a child with diabetes and that his blood glucose levels wouldn't come down at school you would really wonder. What kind of parent lets their child go to school high? What kind of parent is nonchalant about a child being high? Actually even this parent wasn't nonchalant. I was concerned and surprised. I was going to change his site if things didn't improve but of course he was low once he was home. Go figure!!! He was home for most of the week with storm days and I adjusted basal rates regularly. As soon as he went back to school his readings went haywire.

Back to the conversation though...it really happened. I was in a car with some friends and my phone rang. My oldest son had forgotten his key and he wanted to know if I would be home to let him in the house. Liam's teacher got on the phone after him and we proceeded to have the "high" conversation. As I hung up I couldn't help but laugh. If I had been in a car with any other people they would have been calling Child Protective Services! Thankfully one person was my best friend who has learnt some of the "lingo" over the years and the other person happens to be a parent of two children with diabetes and very familiar with "high" kids. The humorous side of diabetes!

January 24, 2008 There have been many questions surrounding the Canadian release of the Cozmo 1800 onto the Canadian market. Below is a statement from Keith MacKinnon, Vice President Sales and Marketing for AutoControl Medical, Inc. hopefully it will help clarify some of the issues that people have been having.

Dear Barb,

In December 2007 Auto Control began shipping the new Cozmo 1800 insulin pump. The Cozmo 1800 was approved by Health Canada the week before the CDA event in Vancouver.  We then worked diligently to place and receive our first order of pumps.  

Unfortunately when people called to get a date the only answer AutoControl had was “I don’t know”.  As frustrating as that is to hear we at AutoControl have always felt it is better to truthful than to give an answer that may be misleading and lead to even more aggravation. 

Many people have asked since we have launched the 1800 if they could “upgrade” to the 1700 like they did in the US.  In Canada anyone who purchased a 1700 on July 1st, 2007 or later will be contacted to receive an 1800 some time after April 2008. 

Smiths Canada now offers a 5 year warranty with the purchase of an 1800.  This is the first time a pump manufacturer has extended its warranty to more closely match insurance companies programs in Canada, as well as the new provincial programs. 

January 23, 2008 Customer Service. Its everything especially for those of us living with a chronic illness. I remember when Liam was still a toddler, I found him on my bed having a nap. I panicked and tested. The first test read fine but I didn't feel fine. I retested and he was low. I gave him a juice box and he was back up and playing in minutes. It terrified me. I called the meter company and they gave me a bit of a hard time. I am not the best person to deal with. I will readily admit that. I know what I am doing and have no patience to go through the required hoops of "did you wash his hands? Did you dry them properly? Have you coded the meter?". I realize that they are important but when I am in panic mode I just can't take it. In those days we had one meter. Today we have at least 6 in the house at all times. If one dies or doesn't seem to be right I just move on and call the company later. The moral of my story? When I got a false reading and poor service, I never used that meter again. I have since used other products by this company and had the same problem. Liam likes their meter. It has certain conveniences but I just don't trust its reliability and will not buy the strips. Its all in the service.

I have been very lucky that we have received pretty good service with Liam's pump. Its his lifeline so you really don't want problems there. We had one period of time with poor service. Being me, I rattled every branch of the tree until I had answers. The answers came quickly and the service was once again stellar. It kills me when other people don't get the same service. I have been asked by various diabetes product companies time and time again what is the most important thing that they can do. Its simple...provide exemplary customer service. We spend a lot of money maintaining tight control of diabetes. We require some respect and usually do get it. Its vital that you have a good relationship with all members of your diabetes team and that includes those who provide us with our tools.

January 22, 2008 Yesterday I received a number of emails from people who were having difficulties with AutoControl. This is the Canadian distributor for the Cozmo insulin pump. Tomorrow I will have an official statement from one of the company reps addressing the issue of the 1800 pump and its release in Canada. There has been a lot of confusion. Hopefully we will have things straightened out tomorrow.

January 21, 2008  Always double check before you correct. I was reminded of that last night. Its easy to do when you are alert but even then you can forget. I tested Liam and was having problems getting blood. I had to lance his finger twice to get enough. It took a bit for the meter to accept that there was blood and read it. When it finally did it showed a reading of over 18 (325+). Holy cow!! Time to correct!! but something made me stop. I had used FreeStyle meters before and had them be slow to compute. When that happened the reading tended to be wrong. Something actually made me think and stop the correction. I grabbed a new strip and tested again. His new reading? 8.6(155). Wow! Big difference! If I had corrected life would not have been nice! Was his finger dirty? Maybe I should carry a facecloth but then I also would need a towel to dry his fingers because the water would create a false low. I will stick to what has worked with us...clean fingers before bed, retesting when there is a high and not automatically pressing that "correct" key.

I don't know if this is a FreeStyle problem but it is something that has happened to us more than once...if your meter takes a lot longer than those 5 seconds to compute a reading it may not be accurate. If you have a meter that takes longer than 5 seconds to do the work then apply it to the amount of time it should take. I don't know if it means the meter is failing (although the batteries have been going before when this happened) but it does mean be cautious. Well it does for me anyway.

January 18, 2008  Last night I am doing the usual of treating stubborn lows when I would really like to be in bed. As I am headed down the stairs in search of more glucose sources I began to think that the US system of measuring blood glucose levels is actually very powerful. Liam was 5(90) then 4(72) and then 3 (55). Which of those numbers sound more impressive? Its a bigger deal to have dropped from 90mg/dl to 55mg/dl than it is to go from 5 to 3mmol/L.  Its the same as those diagnosis figures--being diagnosed at 42mmol/L or diagnosed at 756mg/dl.  On the other side of the coin though is that for those who know nothing about diabetes or how your blood glucose is measured, both numbers mean squat. I remember when my son was diagnosed. The number meant as much to me as "ketoacidosis". Dead in 12 hours meant something. A blood glucose level of seven time higher than it was suppose to be had an impact. Its all relative I guess. The strange things you ponder at 2am.

January 17, 2008  Some days you just have to laugh. I was choked with Liam before supper. He had been told to wash his hands and check his blood. His brother busted him on not washing his hands. He washed his hands and then didn't bother to test. URGH!  Somehow we managed to get through the evening and I was going for a late evening walk. It would appear that my boys are getting bigger than I thought because I easily fit into Liam's new winter jacket. I opened up the pockets to add my mitts and was pleased to find that he had his tube of glucose tablets in his coats. Some messages do sink in after all of these years!! I took out the tube and found ONE tablet in the bottle. You can't ask for miracles I guess so I filled the bottle. Baby steps are better than no steps.

January 15, 2008 I was recently told to check out a website. Being me, it took a bit for me to actually go there. When I arrived I was surprised by what I found. The site is called www.diabeticrockstar.com I don't know what you are thinking but I was thinking it was some dudes way to self-promote. WRONG. The site opens with some awesome philosophies. You should live your life like a rockstar for one thing. Live it big and remember "Diabetes isn't a death sentence--life is a death sentence." How true! They also note that "life is special so do something special". Again, its a philosophy that I prescribe to! 

Yes, I signed up for the site and joined a few of the discussions--even online you can't keep me quiet! I was really impressed when I checked out a section on favorite websites and found me! I then scrolled down the recommended sites and guess who I found AGAIN?? Wow! We were consider definitely rockstar material. That made me feel great. 2008 is going to be the year that Diabetes Advocacy does reach rockstar status. We touch so many of you already and we are poised to try and touch even more. To help more. To do more. Look out world, here we come!

View my page on Diabetic Rockstar

January 12, 2008 Why is it that stubborn lows only happen on nights when you have to get up early the next money? I was woken up at 1am to my phone ringing. Since I was up anyway, I decided that I should test Liam and then try and get a few minutes sleep. When I tested he was 4.8. Dang! Okay, a nice big glass of apple juice and I will have a good night's sleep. Wrong once again. He dropped to 4.3 within the next 15 minutes. Yep, four letter words are beginning to creep in with the panic. More juice. Waiting. Praying. If he is still low that's it, I am dropping his basal rate. Finally he reaches 6! Oh happy day but its now after 2am and I have to get up at 7. I am not a happy camper. I am a tired camper. Diabetes sucks!

January 11, 2008 Wow! You know that if you read the directions before trying a new infusion site it tends to work a LOT easier?? Okay so its not rocket science but I retried the Inset30s tonight much to the dismay of my son. First I actually read the directions. They were pretty simple down to the "pull off the red tab". It takes off all of the tape and you just pluck off this tab and the needle cover and tape are gone. You put the little feet on the skin and voila! its finished. All in and perfect. You can even see that the canula is IN the skin! It takes so little to amuse me but I was quite excited by this site. If you like 30 degree infusion sets this is a must!

January 10, 2008 Its very easy to get into a rut. You get stuck focusing on this or that and I have to admit that I get stuck in certain areas of this site as well. Some areas demand constant attention and other areas you tend to almost forget about but are well worth the visit.  I am currently working at making changes, streamlining and preparing the site to work more efficiently. In doing so, I went back to the songs and poems section. I had forgotten some of the powerful work that was on that page. People living with diabetes can create some incredible and powerful statements. I also decided that it was time to have a place for all of those great test strip stories. If you haven't seen the poems and songs page, check it out! If you have tales to add, please send them along. We all know that test strips are like dust bunnies--they have a life of their own and they get everywhere magically!!

January 8, 2008 The Star Fish Based on the story by Loren Eisley... I awoke early, as I often did, just before sunrise to walk by the ocean's edge and greet the new day. As I moved through the misty dawn, I focused on a faint, far away motion. I saw a youth, bending and reaching and flailing arms, dancing on the beach, no doubt in celebration of the perfect day soon to begin. As I approached, I sadly realized that the youth was not dancing to the bay, but rather bending to sift through the debris left by the night's tide, stopping now and then to pick up a starfish and then standing, to heave it back into the sea. I asked the youth the purpose of the effort. "The tide has washed the starfish onto the beach and they cannot return to the sea by themselves," the youth replied. "When the sun rises, they will die, unless I throw them back to the sea." As the youth explained, I surveyed the vast expanse of beach, stretching in both directions beyond my sight. Starfish littered the shore in numbers beyond calculation. The hopelessness of the youth's plan became clear to me and I countered, "But there are more starfish on this beach than you can ever save before the sun is up. Surely you cannot expect to make a difference." The youth paused briefly to consider my words, bent to pick up a starfish and threw it as far as possible. Turning to me he simply said, "I made a difference to that one." I left the boy and went home, deep in thought of what the boy had said. I returned to the beach and spent the rest of the day helping the boy throw starfish in to the sea.

A friend sent me this link one day when I was feeling a little down. I had questioned my work and if I really made any difference at all. There are so many issues to tackle. So many problems. So many people who need help. What can I do?? Who am I?  I read this story. I realized that as long as I help one person all is fine. As long as I can make a small difference then all is fine.

January 7, 2008  First day back at school and we have victory! That translates to Liam being in range the entire time he was at school. Oh happy dance!!! Of course that didn't last once he walked in the house. He has been high ever since. Oh joy! We will see what the night holds. Last night he 4.5 (80ish) just before I was going to bed. I didn't trust the 4.5 and gave him 2 glucose tablets. I tested again 15 minutes later. I expected to see a 6 (108)  at least but instead we were now dealing 3.9 (66ish). My heart was again racing. I hate this crap!! Was he going to go up? Was I going to be able to sleep ever??? Yep, up to 7.7 (135ish) and up to 12.3(223) by 3am. No correction and back to 7.2 (130) by 7am. I love this rollercoaster. Urgh!

January 3, 2008  My first Inset 30 and I totally failed. Reading the directions probably would have helped but why would you do that? Maybe because screwing up means that your kid spends an afternoon at Dad's in the 20s?? Not a nice visit. Dad did the site change and called for the correction. Next time I think I will read. The sites have great reviews from those that are using them. We will try again.

January 1, 2008 Happy New Year!!! And what a year its been. 2007 was full of new friends, old friends, wonderful victories and terrible losses. 2008 will be full of great things as well. Diabetes Advocacy has great plans for 2008 and hopefully they will offer so much more for you and other readers.

But with change come more of the same. We had a great family New Year's Eve that ended this morning. Bg levels were pretty good and so was diet. Liam got up close to noon. His levels had slowly been climbing from a lovely 6 (108) up to a not so lovely 10 (180) to.....yeah, more of the same. Liam forgot to test before he ate his breakfast! Was Mom choked? Oh yeah!!! A new year, a new start, the same old hateful habit! OY!!!

2007

December 2007

December 28, 2007 What the heck is it with the media and their "expert" writers??? I opened up my local paper and realized why I don't normally read it. There is a professional who is offering advice for the 2.5 million people living with diabetes who need to get through the holidays. I appreciate that. Too many people don't know or care how to take care of their chronic disease. They do need information but WHY, why, why do these "experts" never feel the need to differentiate between Type 1 and Type 2 diabetes? Some of the information does cross over but things like "don't forget to take your medication" and the dietary issues are different for these two diseases.

We all know that it is important to eat healthy. We know that if you drink it should be in moderation.  When you are taking an external source of insulin however, the issues do change slightly. For a Type 1 you look at peaks, feeding insulin or better yet carb to insulin ratios. Type 2s really do need to worry about how much food is going in and their medication because they can't "adjust or correct" with fast-acting insulin.

I know, its me, but I really wish experts would learn to state "type one.........." Type two......" Its an easy disclaimer that would keep the rest of us so much more calm.

December 26, 2007 I am not sure about this new pump. I really liked the time of day feature...you set the carb ratios to times of day. If its noon and your kid is just eating, they use the ratio for noon rather than having that brain dead moment when they say "well I am eating breakfast". It happens in my world. On the downside, I found that when I hit "pizza" to bolus for a high fat meal, it used the 1:30 ratio for supper rather than the 1:20 ratio that I use for a high fat meal. I think we are going back to the old standard. I knew that all of these bells and whistles would only be interesting for so long but hey, we still really like the new color! Liam is going to retry the Cozmonitor.  We will get to try the hypo correction options that is suppose to be awesome. Time will tell.

December 24, 2007 We are hooked up and working out the kinks. There is a weekly scheduler on the pump. I thought it would be great BUT today is Monday and I have it set for school...there is no school so it woke me up far too early. The time bolus thing is also a little interesting. We could hit breakfast at 8pm and it will use the bolus ratio for that time period. The downside is that if he is high at that time and I want to use a different ratio I seem to have to do the math. I remember reading something about a way to deal with insulin resistance so its back to the manual.

So far not a lot of difference in the old one. New features that we will play with for now and probably disconnect within a few days but new toys are always welcome..especially at Christmas!!

December 22, 2007 Its here. Its green. Its pretty and its sitting on my desk! Liam's pump arrived yesterday. Its like a cool Christmas present for Mom! Sadly it make take me until Christmas to finish reading the manual! I have most of Liam's details plugged into the pump but there are some neat new features which will help when he is not at home. The bolusing by time of day is awesome for us. It will eliminate the using breakfast bolus when he is eating at 11am. I also have the pump set to LOUD. They still won't allow us to set it to electric shock but one day :-)  Back to reading!!

December 20, 2007 We've come a long way baby!! I was thinking about it today. I was online, which in my house means that there is no phone service and you can't reach me unless you email me. I looked at the time and realized that Liam could be testing. I also realized that it didn't matter as much any more. Once upon a time, I would make sure that the phone line was free and I was sitting beside it at all times I knew Liam would test and/or eat. Now, I don't think about it nearly as much. I worry about lunch time....if they have had a bad morning, I will hear about it then. I think about it after school in case I have to go to school but between the staff and Liam, I am pretty confident. Now I just can't ever have him change schools or have a major staffing change!!!

December 19, 2007 I was watching a program last night. It starred a person that I know has Type 1 diabetes and wears and insulin pump. I kept telling the tv "tuck in your shirt and let us see your pump!!"  Funny but no one was listening to me.

Actually the other person in the room was. He reminded me that not everyone wants people to know about their diabetes. I reminded him that I am sooo out there, I can't imagine not being this way. He was right of course. This celebrity is very good about talking with children and being public about his disease in the right venues.  I just think every venue is the right one. The more sane person would have to admit, what value would showing a pump on tv when the show had NOTHING to do with diabetes? People would wonder why he felt the need to show off his new cell phone.

For me, I look at every opportunity to educate. I am like the friend of mine who will show her pump to a cabbie. I want people to truly KNOW about this disease. I want them to understand what we deal with. Everyone educates in their own way. I have to respect that.

December 18, 2007  I got a late night Christmas gift. Liam's new pump has left the warehouse and is on its way to me!!!!! I had to send in new forms but they have finally figured out how our new pump program works and our new green baby is on his way!!! I can't wait to begin. There are a couple of new features to figure out and then we will be happening. We are so excited!!!

December 15, 2007 Ontario is the only province to provide a nurse for our children with diabetes through their community health program.  Recently there has been some fear that well-meaning doctors in the Markham area have suggested that a nurse is not necessary for our children. They suggest that we should just send our kids to school running high and not worry about them testing or being watched.

I was personally stunned. I was more stunned by the response of people living with diabetes when I brought the issue forward.  I had people who have lived with diabetes tell me that they have run high for most of their lives and what is my problem? I heard from parents who felt that our kids must learn independence and certainly do not require a nurse. One parent suggested that we go back to the old system of actually have a school nurse to assist everyone.

I was taken aback by most of these responses. I don't think that they have had some of the same experiences as others have. Who cares if a four year old, newly diagnosed child is going to school and is terrified to test themselves. Who cares if that child doesn't know her numbers and can't interpret the results.  Who cares if a newly diagnosed 7 year old can't tell if he is high or low. Who cares if a 6 year old still can't interpret what the meter means to her treatment. Who cares if an 8 year old feels peer pressure and doesn't eat all of the food that they have insulin in their system for and then goes out to play on the playground.

I care about these children. These are the reason that they need a nurse. Sadly many schools will not assist these children. The teacher may not feel comfortable in dealing with our children and yet we are to expect our children to deal with this. We expect our high or low child who can't think properly to know how to treat their bg level properly. 

We can't. We must remember all children in this equation.

December 12, 2007 Why do I do it? Its a question that has come up a lot. Why do I do what? Keep my son alive? Obsessed about basal rates, bg levels and the latest technology and research? Those are all pretty obvious right? I am a mom. Its my job to hand my son over as perfect a body as possible.

Why then do I do the rest of this? Again its simple. Knowledge is power. All people living with this disease should be allowed some power over this disease. If you read my regular rantings or you live here too you know that this disease often leaves us feeling powerless.  This is my small way to help empower people. To let them know what is out there. To help them to understand that they are not in this alone.

What do I get out of this? So very much. A wonderful network of friends. The chance to travel. An email or card that lets me know that I have made a difference. The satisfaction of knowing that more people are now receiving the DTC because of my efforts--CRA are even telling people that they can get this credit--that's quite the change for the days when they did everything to deny our claims.

Yep, diabetes sucks but the network and the opportunities it has afforded me? Incredible. Would I give it all away for a cure? In a heart beat!!! Sleep would be a welcome change!

December 10, 2007  Welcome to the wonderful world of rollercoasters...I mean diabetes! Last week it was lows that just would not come up for love or glucose. This week its highs that make NO sense!! Its driving me crazy! I know, short trip but I knew this would happen. My biggest issue? What the heck is going on in his little body while I wait to see what to do?? He is high and I mean 17 then I bring him back down to 7 then he spikes back up to 17. No its not air in the tubing. No its not high fat foods. Its just my nightmare! I made a few small adjustments. I am making sure to pre-bolus when he is high. I am slowly going crazy. I hate diabetes, I hate diabetes. I suck as a pancreas. Who knew I was suppose to be a pancreas in this lifetime!?!

December 7, 2007 Its Christmas time and my boys are off making a Christmas music CD today. Because they are going to a recording studio instead of class, they didn't need school bags...well Liam did. Actually he decided he could make do with the extra large lunch bag he has. We put his kit and log book on the table in hopes he would remember everything this morning. We didn't want to put the meter in the fridge with his lunch.  This morning he grabbed the meter, the book and his lunch. He was suppose to grab glucose too but I don't know that he did. We have tablets in one jacket but is it the one he has on?? I hate this. No just grab your lunch and go. He is worried about a pen to log numbers (yes Mom can just read off the meter but don't tell him that), a note book, a meter, strips and glucose. What a going on! That remin