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!!!

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 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 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 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 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 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 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 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 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 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 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 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 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.

February 2008

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.

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 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 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 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 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 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 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 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 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 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 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 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 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.

March 2008

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 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 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!

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 begun 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!!!

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 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 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 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 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 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 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 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 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!

April 2008

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?

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 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 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 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 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 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 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 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 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 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 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 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 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 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.

April 28, 2008 I have been doing a lot of thinking lately. As I recently told a 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 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! 

May 2008

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....

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 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 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 9, 2008 Today I received another email regarding the "deadly pumps" newspaper article. I decided to take matters into my own hands and sent out the following letter to various media outlets as well as the Health Ministers of most Canadian provinces. I don't want our work to go backwards because of some sensationalism. Here is what was sent...

On Monday May 5th an article by Carla K. Johnson appeared in numerous newspapers on the dangers of teens using an insulin pump. The article has left many people with the wrong impression of insulin pump therapy and has created unwarranted anxiety in some insulin pump users.

Ms. Johnson states that there are tens of thousands of teens using an insulin pump worldwide. This group was studied for a period of 10 years and 1500 “pump related injuries” occurred. Out of those 1500 injuries, 13 resulted in death. At first glance this may seem alarming but when looking at the facts of life with diabetes this statement means nothing.

Over the past 10 years there has been a vast improvement in insulin pump technology. They are now considered “smart pumps” and have the ability to assist users to avoid “stacking” of insulin (which leads to low blood glucose levels and coma). Some of these new pumps have Continuous Glucose Monitoring technology which allows the user to know what their blood glucose level is as well as whether it will continue to drop or rise based on other data. Most pumps also have alarms that assist the user in knowing when to test their blood glucose, when to normally administer insulin, when to change their infusion set, when they are getting low on insulin and when the pump is not performing properly. All insulin pumps have numerous internal checks that are performed regularly throughout the day to ensure that they are functioning in a safe and effective manner. It is also common for insulin pumps to have “locks” on them to prevent children from “playing” with buttons and delivery limits to prevent an accidental overdose of insulin. Insulin pumps also have a history which allows parents to review and ensure that errors have not been made and that insulin has been dosed for meals.

An insulin pump is a mechanical delivery system and it is not perfect, but it is the most precise form of insulin delivery available to a person living with diabetes. Studies have shown that insulin pumps provide both superior diabetes control as well as improved quality of life for people living with this disease. For those living with the disease, some feel that the pump allows them to feel normal and almost forget that they have a chronic condition.

The article notes that there were two possible suicide attempts by teens who were using an insulin pump during this time frame. Diabetes is a very stressful disease. For teens this can add another level of fear and anxiety to an already difficult period in their life. A teen with diabetes who is suicidal can do just as much damage when using injections as they can on an insulin pump. They can overdose on insulin or fail to take it and put themselves in potentially lethal situations.

There is also reference to teens not knowing how to properly use their pumps. Most modern pumps are extremely user friendly and can be easier to use than a cell phone. If there is a problem knowing how to use the pump it reflects limited support and education for those living with diabetes. Properly using injections is not an easy task either. Establish correct amounts of insulin in a growing child or an insulin resistant teen can be a challenge to the most knowledgeable but this does not mean that pumps are unsafe but further emphasizes the importance of ongoing diabetes care.

Dr. John Buse is quoted as saying that teens want to use an insulin pump so that they are free to eat with their friends without the regimented lifestyle of old injection therapies. He notes that there is a real issue of blocked tubing in the pump which can quickly escalate to a serious medical condition. There is no arguing with the seriousness of insulin delivery failure and that is why all pumps will loudly alarm when there is such a blockage. It is also advised that a person using an insulin pump also go through many more checks when their blood glucose level is higher than it should be. Those checks include an extra test of the blood for “ketones” which quickly lead to an imbalance of carbon dioxide to oxygen in the blood stream as well as a through examination of the pump, tubing, and insertion site.

This article does not mention the deaths that occur because of undiagnosed cases of type 1 diabetes. It does not mention how easy it can be to inject the wrong amount of insulin when using a syringe and not having the luxury of a history to look back on. Support for parents and those living with diabetes is a must no matter what form of insulin delivery is used. This is a disease that does not rest and thus can become very stressful for all involved. Insulin pump therapy is slowly helping to alleviate some of that stress. It is allowing people to live with diabetes rather than diabetes ruling their lives. Diabetes is linked to many deaths and complications. Insulin pumps are simply tools that help to make that outcome a little less likely. 

May 18, 2008 A few weeks ago Liam and I had a discussion while he was getting his site changed. He asked how you would pay to stay alive if you didn't have private or public health insurance to cover your diabetes supplies. I shared this story with some friends and it inspired one friend to write an incredible speech on this issue.

He will be speaking at a JDRF event and brings up some incredible and moving points. He notes the real costs of diabetes. He notes the emotional cost of knowing that this disease will never go away. He notes the physical cost in the toll it can take on the body. He notes the financial cost of tight control. He notes the cost of time you spend educating, treating, and surviving.

He also notes the  reward. Who would think but there can be some reward in this disease. Seeing your child live a "normal" life, helping to raise funds for research, camps and supplies; meeting new friends  and sharing with others.

Thank you Rick for sharing with me and becoming a friend. 

May 19, 2008 Liam asked to go to a friend's house today. I gave him a time that he was to be home. I made sure he had his lancet, strips and hand cleaner. He is suppose to always have glucose on him. I told him to call me with his reading before he left his friend's house. About 10 minutes before he was due to be home I got the first call. "Mom I'm 3.0 (54)" Crap! Okay, "do you have your tablets?" I hear a pause and some mumbling. I suggest that he ask his friend's parents to give him some juice but make sure it is NOT sugar free. He says okay and admits that he has no glucose on him. Urgh! I told him to call me back in 15 minutes.

Time passes and the phone rings again. This time Liam tells me that he is up to a whole 3.2 (56). I am not overly panicky about the situation because he is at my best friend's house and they are not far away. I am a little concerned if he has explained that he needed a sugar drink but again, they do know the difference so panic stays away. 

Time again passes but this time its not Liam calling, its his friend's mother. Oh crap! Has she panicked? Is everything okay? No panic but Liam is gone! He left and didn't tell her his reading. The boys he was playing with have no clue as to what his reading was either. We are both sitting wondering if he was okay or if he was out of it and just left. We chat and wait. Liam finally comes in the door. I ask his reading. He was 6(104) and couldn't find an adult so he left. I told him that his friend's mom was on the phone and she was worried about him.

We discussed the fact that he should have found her and told her he was okay. We also discuss the glucose issue. I had mentioned to my older son earlier that this is the one time Liam has a great excuse for being late!  

May 22, 2008 I swear lows know when the worst time to happen is. They happen on those nights when you have something really important to do in the morning and extra sleep is just not an option. The other night was of course on of those. Liam had fallen asleep on top of my bed. At 11pm he was high. I corrected him. At 2am he was perfect. Life was good. At 4 am he sat up, moved around a bit and I made sure he still had the blanket I had thrown on him. I decided I should test because I was up. I was shocked when I read 2.5 (45).  The upside, the low retest alarm was by my ear so it was no big deal. The next low was not welcomed. It took me until well after 5am before I went back to sleep. Liam was okay before that but Mom was a little wound. I hate this disease. I have made more adjustments. Wish me luck for tonight!

May 26, 2008 I got my birthday present today!! Okay its a little late but I was excited nonetheless. For years I have been admiring the work of TAH and wanted some of his jewellery. I always had an excuse as to why I couldn't buy any. This year I decided I had put my treat off for long enough and I placed the order. He didn't have my ring size in but I would have it within a few weeks. He was true to his word and I was like a little kid when I went to the mailbox today. I opened up the parcel as soon as I got in my car. It was wrapped in a beautiful box. It was way larger than I expected but perfect for what I wanted. I didn't want a dainty ring. I wanted something larger to wear. This was ideal! It was a little big but as the day has worn on and heat has hit my hands, it fits just perfectly. I am in love! I missed the part where I could have had it engraved but that's okay. I am fine with it just the way it is. My gift to me.

May 28, 2008 Pizza. I am starting to believe that it truly is evil. I was so sure that I had the pizza beat. Readings were so good. Life was great. Liam had been to the dentist. Two hours in the car, plenty of inactivity, travel basal added, pizza bolus added, life good. Wrong. I was headed off to bed when I tested Liam. He was around 4 (72). I added juice. Life was better. I slept. I got up in the middle of the night and tested. He was over 19 (close to 360)!! Oh yeah, I was pleased. I really hate this roller coaster!!

May 31, 2008 I just don't know how to say a big enough thank you. On June 13, my children's school will be holding their fifth annual diabetes walk. There are less than 60 students in a school that runs K-Grade 8.  For some reason there was some confusion and shirts did not get ordered for our walk this year. In fairness to the group we are walking for, this is only the second time proceeds have gone to them.

Yesterday I tried to stay calm as I realized that I may not have any shirts to give to these kids. Some of them set specific goals so that they know they will earn a shirt. These shirts are then worn proudly all year long. They seriously bring tears to my eyes. They are incredible and generous. They raise thousands of dollars every year through $2 and $5 pledges. It is amazing and moving.

I wanted this year to be special. It is year FIVE and every year they have raised more money. I live in one of the most "have not areas" of Canada. Our neighbours are pensioners or seasonal workers. We have the highest unemployment rate in the country. This makes what these kids do that much more special. As parents, we have started to make the day a little more special for the kids by having a day at the park for them before the walk complete with fire oven baked pizzas. Its an incredible day filled with lots of work for me, but even more--incredible pride and joy.

To find out we may have no t-shirts was devastating. I was told I could order some locally. I checked into the cost. Because I need so few (relatively speaking) and I need them very quickly, the cost was approximately $13 per shirt! That would put a huge dent in our fundraising efforts. I tried not to stress. I tried to stay calm. I mentioned my dilemma to friends. The next thing that happened was amazing.

I had people looking for t-shirts for me. They were looking for "Insulin is not a cure" shirts, blank shirts, and printing companies.  They were emailing for cost estimates, shipping, estimates, and timeframes. They were also sending in money to help cover the cost of the shirts! As things stand right now, I have some shirts being sent to me Monday. I have money to cover the shipping costs of them. If I need more shirts, I have two options to get more. Things are looking incredible. I am so excited!!!

If you would like to sponsor this walk or want more information, please check our front page under "in the news" for details and click on the Paypal "donate" button if you would like to support these kids. For those who already have....thank you from the bottom of my heart! You are truly amazing!!!!! 

June 2008

June 3, 2008 Low, high, low, lower. Oh the joys of diabetes in the summer. Liam has been everywhere. I am not making a lot of changes because I never seem to know what tomorrow will bring. Its slowly driving me insane. Today he spent a lot of time in the twos (36+) and we haven't been there in ages! What gives? Oh yeah, activity gives...well it doesn't it just gives me grief. Tonight I have upped his basal. I know I just said he has been low--except for nights. When he is at home at night he is running higher. My nerves! I am praying that I am not up all night fighting lows. I am not so sure at the moment. I love these changing seasons. Oy!

June 4, 2008 So I waited and waited all night to see what would happen with the basal changes I made to Liam's pump. I couldn't sleep which meant that I spent a lot of time thinking I should use the washroom instead. After numerous trips my mind started heading towards the notion of the dreaded D word. Its one thing to test Liam but how the heck could I test me? Its not the pain. Its the sound of the lancing device. It messes with my head and I pull away at the sound of the bang. I know its not a bang but to me when its my finger out there, its a BANG!

The more I thought about it the easier the answer was. AST! I can do AST with no problem. I have no idea why Liam hates it but he will not use an arm under any circumstance. I used to use it on him all the time at night to give his hands and fingers a rest. For some reason I stopped doing it. I think I need to go back. We had no problems of variance between the two sites. Why am I abusing his hands?? Well at least it wasn't a wasted sleepless night. 

June 7, 2008 I had an interesting conversation with a friend this evening. He was very upset by a recent Bayer commercial. It showed a child on her father's shoulders. She discussed her life with diabetes and in the end stated that she was living with a monster...diabetes. He has two children with diabetes and when raising them, the focus was always that diabetes is a disease that they have to live with. It does not stop them from living a wonderful life. He thought that a monster was a terrible term and didn't promote a positive way to live with the disease.

Much to his surprise I disagreed with him and said that diabetes was a dia-beast! Only a dia-beast would cause a low in my child at 4:30am that I only caught because nature called at that time. I agree that you can't allow diabetes to rule your life but it is a monster that has a huge impact in your life. The fight is against something that destroyed my son's pancreas. It is sneaky. It is cruel. Tell my son that it isn't when he can't play with his friends until his blood glucose levels are in range but everyone else is running around. Tell my son that it isn't when he can't go out for recess because he is low. Tell my son that we aren't fighting a monster when he is throwing up from ketones because he ate something and he didn't get the right insulin for it. I see this as a huge monster.

I won't let the monster win though. It almost took my child once. I will do everything I can to ensure that it never comes close again. I will do everything I can to help others fighting this monster. I want to make their lives easier. I will do all I can to help them win their fight as well.

My friend is right...diabetes cannot run your life. You have to live life to the fullest but it can be a royal pain when it chooses. 

June 8, 2008 Well today all of my talking came back to be used on me. The conversation went like this... "Liam, test, get ready for your spelling test, and you need to have a shower." "Mom, testing is all I am going to be doing." "You are right. You aren't going to test your blood. You are going to check it to see if you are in range." "Mom, if I am low I can't possibly practice my spelling test. My brain won't be working properly and I could make mistakes spelling words that I actually know." Of course he was right and I had preached those same words many times before in public and to teachers. Funny how he chose that moment to remember it...cognitively impaired and all. Well it seems that Liam was back in range--4.2 (75) so he was out of luck and had to do his spelling test after all. You have to love it when things sink in...and its used back at you. At least he is listening! 

June 10, 2008 Today was an interesting day on so many levels but I will get into the great stuff later. One incident really bothered me. The issue resolved around a child and parents who for whatever reason were unable to properly take care of him/her. The parent had called me for help once or twice in the past. She is very grating and difficult to teach because she is not willing to learn. It appears that her child is suffering because of this and in a lethal way. The child is sent to school with readings of 33 (594) and nothing is done about it. The child is not brought home, corrected, or ketones checked. They simply tell the school to keep him/her until the end of the day and things will be dealt with when the child returns on the bus. The reason given for not picking up the child is no vehicle. I know for a fact that this family does own an ATV and the community is created in such a way that you can get from their home almost to the school on ATV trails. I have had to go to school on skidoo to deal with Liam more than once because my driveway was blocked but he needed insulin. Where there is a will there is a way. There are also many people who will drive you and they have a lot of family in the area. 

I have dreamed of my own diabetes boot camp for those who can't be bothered to deal with their diabetes. I could be blunt. I could test adults and children alike. I think I could change a few lives...maybe not all of them, but I think I could  scare some reality into some. Today's situation made me want to just take the child home myself. As tired as I get dealing with diabetes, the thought of this child not receiving the best care because of the parents breaks my heart. I remember a lady who worked on our D team earlier saying more than once that she wanted to send kids home with me. Today, before this story, I heard of children who had 14 units of corrections in one day...not because they are already using high doses of insulin but because the rates are so off that all they are doing is fixing things with correction boluses rather than making the proper adjustments. I know that that is what our D team is there to teach but some parents/children won't or can't listen. That kills me. Those are the ones I want to educate, support and help. No one should be under 10 and already in serious fear for their life because of a disease that they have only been fighting for a few years. Our doctor was going to have a very serious talk with the parents, and did suggest that the child may need to be removed from the home if things don't improve. I pray that they listened and learned. They do seem genuinely concerned but its just not clicking in for some reason. So terribly sad. 

June 11, 2008 Well I promised more about yesterday's trip to visit our diabetes team. I will give you more of the good stuff before I give you my trauma. We'll save that one for another day.

The absolute best part of the appointment with the exception of my son's A1c remaining below 7% was hearing about the difference that the Diabetes Hope Foundation has made to families of this province. As I have mentioned, my children's school has been walking for diabetes for the past 5 years. Last year they walked for the Diabetes Hope Foundation as we were promised that all money raised here would stay here and help local families with diabetes supplies. The idea is to focus on young adults and those without diabetes supply coverage. When we were speaking with our Diabetes team, we were told of families that this money had helped. I was so touched that I really had to work not to tear up. It was so incredible to know that we didn't just raise money for something "out there". We raised money to help real people in our area. It was truly incredible and has me totally psyched for this year's walk! Hopefully the weather will cooperate and we will be walking on Friday. If you want to see your money help real families living with diabetes here in Canada, go to our home page and add your donation before we remove the button tomorrow.  

June 12, 2008 The final instalment of our trip to visit Liam's D team. It was traumatic! For the first time ever we saw Liam's doctor, he looked to me and checked on rates, and I asked for the prescriptions to be refilled and then everything changed. Mom had to sit and say NOTHING. Liam was the focus. His doctor gave him a lecture on his care. He told my baby that it was time to spread his wings and do his own care. Site changes, bolusing, testing, and logging are all to be done completely by him by September. Wow! But he is only a baby. He has problems remembering the testing and bolusing and we have to add site changes and logging? Holy cow! Yep its a huge step in our world! I know, mom has to learn to let go. Its so hard though. He's my baby. We have a deal at the moment...school logging and logging at Dad's house is to be done by Liam. He "forgot" last time he was at Dad's but I talked to Dad....so much for that one! I will log at home for a little bit longer. He gets the site ready and I will put it in...for a bit longer. Growing up can be so painful.

June 13, 2008 Our walk for diabetes was to be today but the weather is horrible so we are hoping for Monday if not, Wednesday. In the meantime some students sent in their money which makes my life a little easier because I get to start counting and sorting now. Its always an interesting experience to go through the sheets. This year a new sheet has really got me.

We have a little boy who is in grade one. His older sister was diagnosed with diabetes just before he was born and used to go to our school. They always raise a nice amount of money considering that they do not have much in the line of spare cash themselves. I opened up a bag of money. It was filled with lose change and I knew that this was going to take me a bit. My first thought was a family who had asked to do some extra fundraising. I rolled up my sleeves, got out the calculator and started. When I opened the sheet, I saw this little boy's name. He had 7 sheets filled with sponsors and I began to add up all of the pledges...$1, $5, $3. That was how it went. There were no $10 pledges or $20 pledges it was all small amounts. My eyes began to tear as the total came to close to $300 this little guy had raised in bit and bites. He worked hard to collect this money and I am so very proud. I have seen where this money goes and he has literally helped a person get their diabetes supplies for another month.

I am so glad I do this stuff in the privacy of my own home so people can't see the emotions it brings out!

June 14, 2008  In 8 years I have had scary lows--Liam taking a header into the corner of a coffee table because he was about to pass out right after finishing his lunch  before he turned 3, passing out at the table at McDonalds and sucking on a tube of icing after swimming lessons because he wouldn't go back up but these were all quite a while ago. Last night was the first night I have seriously thought of using glucagon and I did unhook him pump.

I tested Liam at 1am and he was low (3.4 or 61). I gave him a glass of juice (about 20g CHO) and figured life would be good. I shut down my computer, got ready for bed and tested him again. He was 3.1(55). WT????? Okay, more juice is given. Wait. Retest. 3.1 This continues for TWO hours with him never going above 3.7(67). I gave him about 3 glasses of juice, 5 or more glucose tablets, decreased his basal rate to 75% and finally disconnected the pump from his arm.

I honestly don't know when I have felt so scared and alone. It was just Liam and I and he wasn't going up. The hospital wasn't even thought of because it would take me two hours to get there and they would just be doing what I was doing but with me having to tell them. He finally went up to 5.4(95) and I gave up for a couple of hours. This morning he was 13(235) and I was quite fine with that! He didn't rebound because two hours after breakfast he was back at 5.4(95).

I am now going to enjoy a glass of wine and try to unwind. I truly, absolutely, utterly and completely hate diabetes today!!! This isn't fair...at least Liam slept through it all and I realized my glucagon was expired (I checked this morning and bought a new kit today!) 

June 16, 2008 Some people may find me cruel. Some may say I don’t understand. I will simply say that this is my opinion and I do stand by it.

A story came to me the other day of a Canadian family who live on the social safety net. That is fine. It is there to help people in need. That is one of the wonderful things about our country…we look after each other even in difficult times. The problem I have with this family is what I consider their abuse of that system. They have a respite worker who takes their child with Type 1 diabetes out of the home for a set period of time per day. All of us living with diabetes could use some respite now and then. Parents of toddlers and small children living with diabetes could probably really use some respite care. This family has children who are in school. Both parents stay at home. Neither parent is infirmed in any way.

There is difficulties with the child’s care however.  The parents could use more help in dealing with diabetes from what I understand. They do have a wonderful diabetes team and doctor. I have heard great things about all involved. I am not sure why there would be difficulties but there could be personality issues that I know nothing of.

Personally, if I were running the world, IF this family really needed respite care then the worker would be trained in diabetes care and would work with the D team to help the family learn to take care of the child. The respite worker should not be there as a babysitter. He or she should be there to help teach and assist.

Why spend money on a babysitter when that money could be better used in schools for 4 year old students in Ontario who are forced to test and interpret their own bg readings? Why spend money on respite care when that money could be used for an aid to watch over the 7 year old in BC who must eat all of their lunch and bolus their meal properly?  I am sorry but I do not understand this situation. I do not understand what I consider a serious misappropriation of funds.  

June 17, 2008 École  Notre Dame du Cap Fifth Annual Diabetes Walk!!! Took place on June 16^th. Once again we had a beautiful, sunny day. The students were in great spirits and the day was filled with emotion. These 54 students from one of the poorest communities in Canada raised approximately $3150 for the Diabetes Hope Foundation. This makes a total of over $15,000 that the school has raised for diabetes related charities in the past five years. Absolutely amazing!

If you think that children nowadays do nothing but sit on their butts, play video games and think of only themselves then I invite you to come and walk with us one year. You will see the true definition of humanity in their halls.

There is one young lady who makes it her goal to raise the most money she can each year. She receives donations from everyone and everywhere. This year she raised over $800. There is a little boy who’s sister was diagnosed with Type 1 diabetes before he was born.  He took his bike, rode through three communities and collected $2 and $3 pledges. His total was almost $300. There was a family who took it upon themselves to raffle items off at bingos and gave the proceeds to the walk. Even the school principal contacted his colleagues at other schools and brought in his own pledge sheet.

The school is amazing. The children are incredible. Once again they have helped people living with diabetes in their province. The gift they have given is immeasurable. Let me present to you the 2007-2008 students of École Notre Dame du Cap….

June 20, 2008 What a week! Readings have been all over the map. High, low, high, low. No rhyme. No reason. Activity levels all over the map. I need a vacation and the vacation hasn't even started yet. Heaven help us!

There have been some other "high" points to the week. I sent out an email to many about the walk (pretty close to what was written below) and received some incredible responses.  Many others were as touched by these children as I was. In fact they were so impressed that two radio stations did interviews on what was accomplished. It was so great. I did one interview and at the end of the interview I ended up talking diabetes to the reporter. She was able to control her Type 2 through diet and exercise but was very nervous about the scales tipping and her requiring medication. I just can't help myself. I am always chatting about diabetes! The second interview was done live today. The school principal and one of our students were asked about the incredible things they have done. By the end of the day I was almost in tears. Such generosity--just amazing. So moving.  

June 26, 2008 School's out for the summer! Oh joy! Sleeping in. No schedule. Weird bg levels. Baked insulin. Sites slipping out in the heat of the moment. The first time at summer camp and away from Mom. Fun!!! But hey, it gives me a few things to write about over the summer!

As I said, today was the last day of school and it has me thinking. My children both excel in school. I would say that I am lucky but I also know that it is hard work. I make them study. I work with them and we all put a lot into school as there is an emphasis on the importance of education in my house. I can't help wonder however if I make life easier on Liam, don't work with him as much because of his diabetes, or simply he is just a very different child from my oldest.

Liam is smart. Today he received an award for being the top student in his class in French (he goes to a French school so this is one of two topic academic achievements he could receive). I was very proud of him. He lost the math award to a girl who manages to just beat him each year. I can live with that. The award that had me wondering and second guessing myself was an award for reading the most novels in a year. When the year began he had a real interest in reading and was very competitive about having read the most books in class. He was reading more than students in higher grades and completing the required reports on them. After Christmas he lost all interest. He said they didn't have to do it and we seemed so swamped with other homework that it wasn't an avenue I pushed. Being high or low and practicing three different spelling tests, I admit I was glad not to have to deal with making sure that a chapter in a novel was read as well.  I found it hard to deal with studying for this test, finishing up this English assignment, working on this grammar paper, reading the English novel and making sure all his math made sense. One less thing for me to concern myself with worked for me...until today. Today I felt guilty. I should have pushed that issue. I should have gone to his teacher. I have a great relationship with the school. Why didn't I ask? I asked about other things. I blamed others and looked for the easy escape. Now I kick myself and wonder if I am failing my child.

As a parent who values education, am I failing him by not pushing him? My older son is self motivated. He is very competitive and works well on his own. I gave him good study habits with the help of some wonderful teachers early in life. Now he is top in all he does. He works for it and it shows. He was top today in French, Math, English and Science. I couldn't ask for more. Liam did fabulously too but I wonder if I let him get away with slightly less than his very best because of my own laziness. Am I too tired? Am I too worried about him being a kid that I forget that work is part of that equation? I guess we will learn that answer in September. A new school year. A new work ethic...well we will see.   

June 27, 2008 Summer has arrived and so has sweat! Oh the fun of sweat and diabetes. Yesterday Liam was low after playing outside all afternoon. We treated. He came up. He was getting ready to go to a BBQ a few doors down. He had my cell phone. He tested and was a little high (around 13 or 235) but he had been that the day before at that time so I thought I was looking a pattern and the need for a basal change. Off Liam went, happy to be free of Mom and older brother and join the other kids for some summer fun. 

He called for a carb count. He had fun. When he came home he brought a group of friends with him but I made him stop and test. He said "the meter says HI". What??? No way. "Go and rewash your hands and this time use soap!". He retests. The meter says HI. Okay we needed to do a site change anyway but where in the world did this come from? "Did you remember to complete the bolus?" Yes. I am pulling out syringes and trying to guess what HI is and how many units to give him to bring him down to something the meter can read. My oldest son does the basic math as my brain begins to freeze up on me.

Liam asks "where is my site?" Hold on here. He is wearing it. He should know where it is! Its suppose to be on his arm. He looks. Nope. He feels his stomach and its sitting there! How long has it been out? When did this happen? How did I not notice? How did he not notice?

We change the site and cartridge. He gets his injection. We test every hour afterwards. He drops quickly and I spend the night dealing with lows. Not what I had anticipated with missing basal. The last site was glued on. He won't sweat off any more sites if I can help it! I just love this disease! 

June 30, 2008 What a tragedy! The Ride of a Lifetime ended in tragedy. You spend your life fighting diabetes only to die in a fluke accident. Our hearts go out to the families involved. I truly hope that the fundraising continues and their legacy continues.

This was a trans Canada bicycle journey started by a father, his two children and a family friend. They began in Vancouver and made it to Manitoba. They were looking to raise $500,000 for the JDRF. Dad was diagnosed with Type 1 at age 15 and was 50 when he was killed. Stories state that a car decided to pass their entourage and turned back into  the lane too soon. The driver killed the two adults, injured the daughter and the son walked away with minimal injuries. A true tragedy! 

July 2008

July 1, 2008 Happy Canada Day!! Well, I promised you would get to feel my pain regarding sending my son off to camp for the first time in his life. Liam has never stayed with anyone but family. Letting go is tough. Getting the forms filled out is even tougher! Oy! I don't know if all camps are like this but we have 100 forms it seems that have to be filled, signed by four people and then sent back to them in less than two weeks. Good gravy! Why not give us more time? I understand that the short turn around gives you less time to lose the documents and helps them to move people in who may not have a chance to go to camp but its a royal pain.

I have to Liam's doctor sign off on the form. He is two hours away. I was in that town the day before I got the form and have to go back the day after the form has to be in. Just figures! I have to say what Liam's basal rates are and what he eats. I can see why they need the information but its still a pain in the butt. I have decided to go the camp to pick Liam up at the end. He is happy with that of course. I hope he enjoys himself.  He is such an introvert--it will be interesting.  

July 6, 2008 I was talking to Liam the other day about a variety of issues. We spoke of times that it was okay to come home when he is away from home. Basically I was discussing those times when he is bored or uncomfortable at a place and wanted to come home. I have always let my boys know that they can always come home no matter what. As the conversation progressed Liam asked "I am allowed to sleep over at a friend's house?" My heart skipped a beat. He has never slept at someone else's home. I always thought that he never wanted to go anywhere else. I thought he was happy to stay home. His brother was sleeping at friends at a young age, but I never did until I was close to 12 I think. Liam on the other hand thought that he wasn't allowed to spend the night anywhere else because he had diabetes. I wanted to cry. My poor little boy thinking his disease would stop him from being like other children. I told him that he could spend the night elsewhere but he would have to be responsible for his own care. He would have to bring my cell phone and test himself during the night. He was quite happy to here all of this. I still felt terrible that he had thought this in the first place and never told me.

July 9, 2008 I had the pleasure of sitting with a woman the other day who was looking for information on the state of health care in our area. What were we lacking? What needed to change? What could be done? I think she got more than she bargained for when she sat with me.

What does healthy mean to you? No more diabetes! A cure was plain, simple and a unanimous answer to that one. Problems? Lack of education from the bottom up still remains the biggest issue. We have doctors and nurses at the ground level who cannot be expected to keep up with the new advances in every disease. With diabetes becoming a pandemic there should however be a priority to give them at least a yearly in-service on what they may see in their practice.

What about those people who cannot afford their supplies? Why can we not help them? Why do adults not have access to pumps and supplies. They are tax payers and can pay more taxes when they are able to work.  We need to have access to the most advance medicines and technologies.

What abut the fact that many do not take diabetes seriously--those living with the disease and the general public?  We need that to change. In our area you can raise $50,000 for cancer research but can't raise $5000 for diabetes research. Cancer is important but so is diabetes. When a person with diabetes has a heart attack because they didn't look after their diabetes, its the heart attack that gets attention. The diabetes is still ignored despite the fact that it most likely caused the heart attack.

We need change. Its time to up the advocacy efforts. Its time to increase awareness. 

July 10, 2009 This morning Liam came home from a night at his father's and asked me about night testing. He wanted to get up some nights and test himself. I am not sure where that came from. I had asked him what his readings were from the night before. He had left his log book at Dad's and the meter stays there so I have no way to verify anything. I was not pleased. Maybe that is why he wanted to test, so that he would know his readings. I told him he had plenty of time to test himself at night. He knows he would have to do it if he slept over somewhere but he has an entire life to test at night. I just can't give that burden to him yet. If he wakes up during the night I have him test but to have him wake up like I do? No. I have a lot more experience at it. I've been doing it since my first pregnancy and life just continued to the point of me no longer sleeping for more than 2 hours at a shot. One day we will have a CGMS and I won't know what do to with myself. How do you retrain yourself to sleep after all these years??

July 11, 2008 Today is a big deal for a great friend of our's. Jen Alexander is an incredible lady who does not let Type 1 diabetes stand in her way. She is currently swimming from New Brunswick to Prince Edward Island to Nova Scotia. I am tired just thinking about it. I cannot imagine doing it with Type 1 diabetes added into the mix.

Last year Jen swam from New Brunswick to Prince Edward Island and back again. She takes time to test while she is in the water by using a custom designed bottle. She eats when low. She is simply amazing and a great role model.

In our house we tease Liam because he remembers no one. He can meet family, new friends, it doesn't matter. He will remember the occasional person but many that he should remember (because they spent hours together) he will simply forget about. Jen on the other hand is someone that he always remembers and she never forgets him. They use the same pump and compare meters. Jen has been great about sending Liam cool meter skins. They make him feel pretty cool and make his meters look pretty neat too! Thanks Jen!! We will be watching for word of her success. No matter what, Jen remains an inspiration and a wonderful friend to our family and those living with Type 1 diabetes!!!

July 12, 2008 Warning...not for the faint of heart :-)  Liam went to test yesterday but couldn't get any blood. He looked and the lancet was bent in half and covered in blood. I went to get a new lancet for him. He said that normally he would just stand it back up and test! I couldn't believe it. Lancets are not that expensive and we have them everywhere. I changed the lancet, while still slightly grossed out. Liam used his new lancet and complained that it hurt! OY! You just can't win.

July 15, 2008 Its that time of year again, the time when I start to think and brainstorm. November is Diabetes Awareness month and who wants to think about November when its only just summer? I do! I know I am sick but its better than thinking about my son going off to camp and not hearing from him at all for days...but I digress.  

November is Diabetes Awareness month and every year Diabetes Advocacy works to create something special that will get the attention of the public and the policy makers. This year I want to blow things out of the water. I am not sure exactly what I want to do but I want it BIG! Some say I have a way with words so I could do something written but getting the written word in print and passed around to people who make a difference can be a lot of work. Even if you email a document there is no guarantee it will be read or pass spam filters. I have mailed books like The Faces of Diabetes but  there was a huge cost involved and I was lucky enough to have some great sponsors--I also killed a printer.

The tattoo awareness event went very well and still continues to generate interest but that has been done and is ongoing.

I have a few different versions of media events but that requires getting high profile people to take part and the some serious planning on how you want things to go. If you have ideas for November, let us know. Let's put diabetes on the map this November!!! 

July 16, 2008 Maybe its harder because since Liam was a toddler I have done all of his diabetes care. He has been happy to let that happen until this summer. Granted his doctor gave him a kick in the rear and told him that it was time for him to do more of his care but that wasn't the motivating factor. Liam realized that if he took care of himself he could go places without Mom! Ouch, that one hurt. He has severed the apron strings and is happy as a clam. I am here licking my wounds. He is even trying his hand at his own carb counting. I made a big mommy boo-boo when I gave him a hard time for making an error and sending himself high. The smart mom move would have been to say "Awesome initiative but next time try this". Well I am far from perfect despite my occasional claims to the contrary. 

Liam's first big move to independence came when he slept outdoors at Dad's house. He decided that he would test himself at 3am if he was away from home and he did! Mom would have climbed into the woods and tested him at 3am complaining to herself but not wanting her son to go without the experience. Good thing he was at Dad's (not often I publicly say that one!)

Now he is Mr. Social Butterfly! Today he was home for a bit and then gone to a barbeque with a friend! He took his tools. He called for his bolus and he was gone. Mom sat home alone and depressed that her children are spreading their wings and only coming home to shower, eat and get money. This is killing me! 

July 18, 2008 Today was it. Real packing. No more pretending. No more we will think about that later. Liam leaves for camp on Sunday morning. He goes to Dad's house tomorrow morning. Mom is doing very well. I have yet to melt. I even handled it when he decided that after camp he will head two provinces over and visit with his grandparents for a week without me! Holy cow! You give this kid his wings and he flies all over the country! 

I think I am having an easier time of it because of a few things that have happened over the past week. Dad let him sleep outdoors and Liam tested himself. Liam spent the night at a friends. Dad tested at night but Liam survived not being tested in the morning (well until Mom called and had him woken up to test). Now he is off to camp where they will hopefully take good care of him. I am praying that they will test him as often as I have him trained. I have heard some people complain that the control isn't as tight as it is at home for obvious reasons--one kid, one family, tonnes of kids, a few medical people. I have booked our hotel for the end of camp. Liam's brother and I are heading out to "parents" night on the last day and then Liam will come home with us.

Sending him off to his grandparents isn't too much of a worry. They will call at the drop of a hat. My mom will keep religious notes of every breath Liam takes. Liam is getting better at looking after himself. My mom will do night testing. My baby is growing up and wow has he ever grown this summer! 

July 20, 2008 The big day. My baby is off to camp. No contact for the next 4 days. Mom is quietly dying but he went off without so much as a goodbye! It was kind of a oh yeah, bye when I yelled out to him. The pain!

Actually part of the pain was the fact that that I had chosen to be up late the night before and then had to be up early to get Liam from Dad's, do last minute stuff and take him to the drop off point. I had my coffee in hand when I finally arrived where I belonged and my late night was mentioned. It was assumed that I had been up testing and I had to clarify that not this time. One parent looked at me like I had three heads and said no way would they get up at night to test their child. I know each person is different but I have caught too many problems at night so I will continue to night test until something replaces me.

As the conversation continued, another case of a child with poor parental care regarding their diabetes was brought up. Again, I just wanted to take that child home and help. I want a diabetes boot camp for those that don't take care of their kids or themselves.

Slowly reality began to sink in further and so did the depression. I complain about their not being enough awareness. I had mentioned a November campaign that would see awareness put in the spotlight but today I came to a new conclusion. This one I truly have to work on. This one needs to be fixed more so than anything else. How do we get people who live with diabetes in their homes or in their lives to take this disease seriously?? I have come across too many adults, parents, and children who do not take this disease seriously. If they don't get it then how do we make John Q Public understand? If a parent doesn't test a child for a year when that child lives with Type 1 diabetes, how do we get governments to understand why we need test strips covered? If an adult will seize rather than test because they "know" if they are high or low, how do we get them a pump?

We can't target those who visit sites like this. They are the ones who want to learn. How do we hit those who think they know all and won't learn? Those who can't be bothered to learn? Those who have seen a loved one near death and still don't understand the deadly nature of this disease? These are the people I want to hit this November. These are the people I want to reach. Please, Please, if you have any ideas of great ways to do this let me know. I will be thinking. This is VITAL. 

July 22, 2008 Wow!! I am so excited! Diabetes Advocacy has created a new page that I am hoping will help more people and answer more questions. Its an "Ask the Expert" section. I am so proud to say that a wonderful friend and exceptionally incredible diabetes educator, Jill Milliken has offered us her fabulous expertise! So please, take the opportunity to see what Jill has to say and send us any questionswebmaster@diabetesadvocacy.com you may have for her!

July 23, 2008 What a day. I think I am done. Yesterday started great as I got things ready to launch our Expert Page and then the phone rang. It was one of the camp counsellors. Liam was not enjoying camp. What could they do? We discussed things. I spoke with Liam. He just didn't like camp. They were not doing things that he enjoyed and he wanted to come home. That was it. I headed off for the 5 hour drive two days early. We arrived after supper and Liam had his bags packed. I spoke to some of the camp staff as I know a few of them. The head nurse is a great person who just couldn't bear Liam being so sad all the time he was there. They had been to the pool that day and he had a great time so they were all happy he was leaving on a positive note.  When he got in the car her had some great things to say about camp but just wasn't into many of the activities. He enjoyed the adults. He enjoyed their walks but just didn't feel that camp was for him. By 8am this morning I was sooooo glad I spent over 10 hours in my car yesterday to get him....he has been sooo sick! Vomiting and more. He is now asleep with bg levels climbing. My poor baby.

When I first got the call and spoke to Liam, my heart wanted to break. My oldest said, I knew he wouldn't make it. The kid has never even spent the night at someone's house. He is right and why? Because most of his friend's parents are scared to have him overnight. I reminded my oldest that he doesn't know what it is like to know that you could go to bed and not wakeup. This is not a fun disease no matter how well Liam handles it.  I drove to the camp hating diabetes.  I hate some parts of the life my son has had to learn. We have had some great things happen because of diabetes. The diabetes community is a wonderful place but living with diabetes in the real world? It has its challenges and our children shouldn't have to know them.  

July 24, 2008 Day two and I am on pins and needles praying that Liam gets better and no one else get whatever he has. Its funny how you talk about sick days. You think you are prepared for sick days and then they happen and you realize that everything you had prepared has now expired! I will go out after all of this restock and it will be expired by the next time...I hope. I grabbed the ketone meter...the batteries were dead and the strips had expired. Oh well, the strips were being used and I stole batteries from a meter we rarely use. Do I have Gatorade, Pedialyte, or Kaopectate? No. All things to add to the list of emergency supplies. I have Gravol but yep, it expired too and I have three packs! OY!

My poor son, every time he uses the washroom Mom is in there with disinfectants cleaning right after him. Sheets are being washed and blankets changed. On the upside, he has now been awake for two straight hours and some parts seem to be getting better. He has yet to vomit today although we had one close call. No need for Gravol though. He has managed to keep down some ginger ale but he is still achy and lethargic. His bg levels have been good. Ketones are only small. Mom's sleep? I am hoping to catch up on that later...like when he goes to his grandmother's perhaps. 

July 25, 2008 Day three and he is finally on the mend. No one else has fallen pray to whatever he had and I am soooooooooo glad! His fever finally broke last evening. He has not thrown up since yesterday morning and his bowels are slowly coming around. What a ride! Thankfully minimal ketones that slowly disappeared as he ate, good bg levels, and a lot of sleep...well for Liam.

Now I am just hoping things hold. I am holding my breath for the rest of today. I am also worried about his weekend. I don't have control of his food intake and can't make sure his diet stays bland and easy on his digestive system. He is still planning on going away next week so we need him in tip top shape to go away for a bit. 

July 30, 2008 I am slowly packing Liam to get ready to go to his grandparents. There is the going through all of the clothes that he will need, the toiletries and then there are diabetes supplies OY! Let's not forget the list of instructions. Did I forgot anything? Good thing there are cell phones...

A day in the life of Liam…aren’t you lucky to have my list ...

Wake up

Test bg levels. If over 7 correct on pump. If under 4 make sure he has 1/2c of juice ASAP

Breakfast. Eat, weigh and figure carbs…more fun! Most items have the carbs written on the package for items like cereal, weigh the cereal and multiply that amount by the total of carbs listed on the side of the box and take that figure and divide it by the serving size listed. Add 6g for a half cup of milk. Bolus total amount of carbs.

Two hours after breakfast test bg levels. If over 10 correct on pump. If under 4 give 1/2c of juice

Lunch. Test before he eats. See above and follow food instructions.

Two hours later test again.  See above re results

Supper. Test before meal and see above.

Two hours later test again. See above

Snack is usually eaten at around 9:30pm. This is a SNACK not a meal. Don’t let him convince you otherwise! Test before he eats and will bolus for whatever he eats.

Test two hours later. See above.

Test about 4 hours later. I will normally test every 4 hours during the night. I will test before I go to bed and then test 4 hours later (or when I wake up). I will test Liam in the morning between 5-8am even if he is not getting up at that time. I don’t let him sleep past about 10 max.

If Liam is going swimming, he tests before he goes in the pool. The pump comes off. It is waterproof but the monitor that is attached isn’t. If he is going to be in for a long time he knows how to use the “disconnect” feature on his pump so that he gets the insulin he will be missing. He will test again when he comes back out of the pool or after one hour, whichever comes first.

Liam is to test before he eats anything. He can have a snack at any time that he is hungry or people are eating. He must make sure that he boluses for whatever he eats.

If Liam is active walking, biking, etc he should always test before or after any activity. If the activity will last longer than 1 hour, he should test after 1 hour.

Readings:

Liam should be under 7mmol four hours after eating or when waking up in the morning.

Before going to bed, I like Liam to be between 6 and 10 mmol.

If Liam is under 5 when you are going to bed, give him either one glucose tablet (he will chew it while he sleeps) or let him drink 1/3c of chocolate milk (again a straw to the lips will make him drink in his sleep)

If Liam drops below 4 at any time give him ½ c of juice. If he is awake and between 4 and 3.5 give him 2 glucose tablets unless he is going to be very active.

If active, he should be over 5 before the activity starts.

If Liam is over 14 check his tubing and make sure that there is no air in the tubing. Have him look at the site to ensure it hasn’t fallen out. Correct on the pump and press button to right to get to main screen and same button to hit MENU and scroll down using down button (has a light bulb on it) until you hit CORRECTION BOLUS and scroll the highlighted numbers to the reading number and press button to the right to OKAY the reading and OKAY the target until you see a screen that says bolus X amount and again, press OKAY.  If the high persists for continues to rise and the corrections are not working have Liam test for KETONES on his ketone monitor. Call and we may need to change the site if hands are clean and there are no other issues that can be found.

Site Changes:

Liam’s pump will tell you when he needs a site change. It will be every 3 days. If you are unsure, have his look at his pump. One menu will say that it is time for a site change and when.

Liam will prepare the site, attach the new site and do everything BUT put the site in. See instructions sent with Liam or website for how to put in (once I get it online) Make sure that he has moved over from the last site. He cannot put a new site on top of an old one.

Insulin cartridges are changed when they reach around 20 units (usually about one week). He knows how to do this as well.

Food:

Liam knows most foods but here are a few more…

1/2c potatoes=15g

1/2c most juices=15g

1/2c of Thirst Quenchers=6g

25g of French fries=15g

25g of chips=15g

Tbsp jam=5g

Tbsp peanut butter=5g

Meat=free

Other food we weigh…

Pancakes are weight times .44

Most cookies=weight times .67

Pizza=weight times .28

Muffins=weight times .45

Apples=weight times .13

Cantaloupe or strawberries=weight times .08

Grapes=weight times .14

Bananas=weight times .2

If I have forgotten something check the site or call me

July 31, 2008 We hit the beach again today and when we came home I was struck by the pictures. Liam had a diabetes t-shirt but the pictures show all of the other stuff we have that is diabetes related. No diabetes is not remotely part of our lives...

August 2008

August 2, 2008 Liam has arrived at his grandmother's house. Whew! If he had stayed with the person he was traveling with for much longer neither one of us may have survived! Liam called this evening to let me know that he was alive and had arrived. He was having fun and despite Mom's best efforts, not missing his mother terribly and crying every second since he has been gone--we won't talk about Mom. 

I eventually asked about his readings. He said that he had been high but he was fine now. I said "what do you mean high?" He said "HI quite a few times. We were going to change the site but then I came down."  I asked when this happened? What had he eaten? He said it was after supper. We had steak and potatoes (and not that much) I know the carbs were right and he doesn't have a problem with steak. The new site should have been fine. What did I do wrong? Short answer...nothing.

Liam eventually noted that they had stopped off on their travels to eat McDonalds. He had had a Big Mac meal. He never eats that much first of all. Second...do you know how much fat is in that?????? Yep, I was almost screaming. I was seriously  having my own stroke especially when I asked how much they bolused for this wonderful meal.  He had been told to bolus 65...That didn't ever cover the flipping fries!!!!!!!!! No wonder he was high! High fat meal, HOURS of travel, NO activity, and only bolusing for half of what he ate! A Big Mac is 47g CHO, large fries are 68g CHO then there is ketchup and did we mention the fat content of THREE hamburger patties and fries? 

What did you do for breakfast? Scrambled eggs, toast and juice. Mom is thinking about breathing again. Did you stop for lunch? Yes...nuggets and fries. No wonder I am on heart medication!!!!

I really wanted to strangle the adult who has no respect for the bodies' of his charges but sadly my poor son was the only one I could talk to. I tried to be rational. I tried to stress to him that HE has to make healthy choices. He told me supper would be healthy. That much I knew because I know my mom's cooking. My mom got on the phone and I was taught a little bit about my poor son...he's a pretty smart kid!

When Liam was picked up, he and his grandmother headed out to pick up a few special groceries tailored to Liam's taste. It turned out that they liked the same yogurt which was great but the best was yet to come. Liam was reading all of the labels. He found the low fat eggos and had his grandmother buy those. He found low carb syrup and she added that to her cart. They looked at the candy his grandfather loved and together they found the lower carb, lower fat option. He did an excellent job looking around and finding the best food choices for everyone. I was exceptionally proud of him so his grandmother put him back on the phone. I told him how very impressed I was. I said that many adults could not do what he did. He had taught his grandmother a few things and I was very proud of him. I said now you have to do that when you are in a restaurant. He said that was tough. I agreed but I said that you have shown how smart you are, with a little work you will be able to do it!! It was a much better note to end our conversation. I know his diet will be good for most of this month. He will be away for almost three weeks...lucky for Mom, she will be joining him at one point. Its too quiet with him gone!  

August 3, 2008  Liam has been gone since Friday night and is now having the time of his life! This is the best camp I could have ever sent the child to.  He has had highs. He hasn't had a low yet but he has been in charge of so many aspects of his care. I know its hard for people to believe but I can be a bit over-protective. I do do a lot of his care for him. I do let him get away with a bit. No go now. He has to do it because he is the expert!

Today they made cookies or Liam made cookies. They went berry picking...Liam enjoyed the sights and ate a few berries while his grandmother picked. He then came back to the house and claimed that they had switched containers so that she wouldn't feel bad for picking so few berries! You have to love my kid! Next was lunch and then heading out to see some sights. The last I heard Liam was being made to dish up his own supper and figure out his carbs. Mom waits on him. Not good. I do it for both of my boys. Doubly not good. After this there could be an end to that practice!!

It sounds like he is in his element. He is the only grandchild so he can be spoilt. He gets all of the attention and in return, he has to deal with his care. My mom has my website up and checking details often but so far it sounds like they are doing very well. One less kid to worry about. Now if I could just hear from my other son, I would be happy! 

August 8, 2008 They have been through two site changes, a high, all sorts of new food and activities and everyone is still alive! Liam has had to do his night testing but he seems to be doing fine at that.  My baby is growing up!! The interesting part will be Mom continuing this rather than falling back into old habits. We are off to get him soon so we shall see how I do.

I plan to keep myself busy working on pumps for adults so maybe I will be good! 

August 9, 2008  Well I have been put in my place!! Liam had eaten his supper and he came over to me to bolus. I did the carb count in my head and told him what to bolus. WRONG! Liam does his own calculations and writes them down himself. He does not need me to interfere thank-you!

Excuse me! Okay. I stepped back and let Liam do it all. He now gets up in the morning, tests, measures and boluses. I just sit and sip my tea. Its weird! Liam still tries to get me to do things but my mom has a different philosophy.  Liam is to deal with it. I am working at it. He still forgets to test though.  

August 10, 2008 I was on Facebook and noticed that my friend Jen Alexander is going to try her three province swim again. I asked her when and where. It turns out she will be leaving at 2am about an hour from where I am staying. Guess who is driving in the middle of the night to wish her luck? Not the fool who will be swimming at 2am but the one who is on vacation.

I asked Liam if he was coming with me. He said at 2am he plans on sleeping thank you! My mom (who knows the area) and my oldest son have decided to come with me. We are hoping for good weather and lots of pictures...in the dark of course LOL! She has lots of well-wishers and I am hoping she has much success this time around. I can't imagine swimming 32km! 

August 11, 2008 Last night four of us set off to wish Jen well. Liam said that he was not going to miss seeing Jen. He was just teasing us! I am so glad that we went. As I type she is still swimming and is getting closer to her goal all of the time. Its fabulous to know that we helped her to get her ready this time. I applied sunscreen, my oldest was the photographer, we carried supplies to the boat, and we helped get the light sticks ready for the swim. It was a great learning experience to see all that she does to get prepared. Most importantly...I got a Cleo flashlight! Well it made my night.  

August 14, 2008 I was going through some of my old entries from when we first started to pump. There was the financial fear and frustration. There was the stress of picking just the right pump.  There was the child who didn't want to pump. There was the reality that my son would be tied to something 24/7. There was a visible reminder that he had a chronic illness.

There was the joy of the freedom the pump gave him. The freedom the pump gave me.

Four years later I would go through similar dilemmas as I chose the right pump for Liam but this time I wouldn't have to rely on others to help me pay for the pump. This time there was a government program in place. The stress of the financial worry was gone but my fight wasn't.  Keep watching as we invite you to join us in our next battle for pump coverage.... 

August 16, 2008 I really hate this disease. I haven't been sleeping properly in days. That should be a good thing because you would think I could use that time to do some serious testing of Liam's night time basals. No. I am spending my time trying to convince myself how nice sleep would be. I am not testing every 4 hours like I would prefer and am then wrecked by some good old Mommy guilt. It sucks but I am the queen of worry and guilt. I would practice what I preach. My son could be having all sorts of problems and I am missing them...okay I am not waiting that long to test him but in my overtired mind? It ain't a pretty scene!

Today all of my family was together for supper. My mom had cooked a turkey. My stepfather, aunt and grandmother were all here. I decided that since Liam's birthday is only a few weeks away, I would buy him a Dairy Queen Blizzard cake for a treat and he could have a birthday cake here. Being the dedicated mother that I am, I went to Calorie King and got the carbs for the cake (they can now also be found on our Treats page). We bolused for the meal. I was confident that all was well because I had a real carb count. Well, as my mother would say, that's what I get for doing my own thinking!

Did I think about the fact that the cake was ice cream AND chocolate? no. Did I think to use a combination bolus for all of that fat? no. Did I want to kick myself in the butt when I saw the reading 2 hours after? Oh big time! I hate when I get complacent with this disease! Liam has been doing so well since he has been at my mom's with his own care. He forgets his reading two seconds after the does them but I remember the same thing when he was first diagnosed. I needed the nurses to kick my butt and he has me to do the same. I still really heat this disease but here is a picture before I remember how much I hate it...

August 17, 2008 Last night we were bolusing for Liam's night time snack. As I have said, my grandmother is visiting from the West Coast. She watched us and said, "Your Uncle Mark thought he was doing such a good thing for you and making your life easier when he organized getting you Liam's pump but it looks like its just more work!" I explained that diabetes is a lot of work but the pump gives Liam a lot more freedom. Our life is much better since Liam's pump. He has been able to spend two weeks with his grandparents. I can go away and leave him with no worries. He doesn't need Mom to go on field trips or attend parties with him. It takes a lot to figure out carbs, to teach, to weigh, to bolus, to correct but he would do that on injections as well. Now he doesn't have to eat at a different time from the rest of us. We don't have to stop for snacks. We eat when we want to. We eat when we are hungry. We correct with .10 units of insulin. No, we wouldn't trade his pump for anything short of a cure. Yes, my uncle did do a wonderful thing...something I will forever be grateful for.

August 19, 2008 I wonder if there is a copyright on Murphy's law because I really think that there should be a "Murphy's Law for Diabetes". Seriously! I have been on holidays for about 10 days. I can sleep in in the morning. I can stay up late at night. Liam has been low once at 5am other than that he has been okay or a little high--remember that he is doing his own care. Tonight I NEED sleep. I have to drive over 5 hours then get on a boat for another 6 and then drive another 3 hours to get home. Tonight Liam is low. Its after 1am, I have to be up and finish packing by 7am and I am waiting to see if he will go up. Only in the world of diabetes! Only when you have to be up do these things absolutely have to happen! Yep, I love diabetes. It has no impact on my life LOL!

August 26, 2008 West Coast Diabetes Advocate Barb Marche, in conjunction with other advocates today forwarded the below correspondence to all Provincial Members of the House of Assembly. Ms. Marche calls for the expansion of the Insulin Pump Program to include all adult insulin dependent pump users.
Insulin Pump Program for Adults with Type 1 Diabetes

In July of this year, Ontario became the first province in Canada to expand their insulin pump program to include adults living with Type 1 diabetes. We would like to take this opportunity to ask that the government of Newfoundland and Labrador be the second.  

The incidence of diabetes has increased by 69% in the past ten years. In 2008 Newfoundland and Labrador's health care budget is $2.3 billion. It is estimated that one eighth of the health budget is spent on diabetes. If the government in this province were to follow the Ontario program, they would spend approximately $4000 per year on those living with Type 1 diabetes. A person living with diabetes working in a minimum waged job would provide $1550 back in taxes each year and someone earning $33,000 annually would more than cover the government expense as they would be paying $5559 in provincial taxes.

Complications from diabetes are constantly in the news. The high cost to the public health system are also very well known as people with diabetes are more likely to develop kidney disease, have heart problems and suffer from retinopathy. Insulin pump therapy is the best treatment for Type 1 diabetes.

It reduces complications by allowing for tight control and provides flexibility in lifestyle thus improving the quality of life for the individual. Reduced complications means a reduced burden on the health care system. In terms of those living with diabetes, the most direct impact would be seen in the reduction of use of kidney dialysis and a direct decrease in the number of haemodialysis units required in the province.

The Newfoundland and Labrador government was the third provincial government to put an insulin pump program in place for children under 18 years. It is tragic to return our youth to an inferior therapy because they are now too old to receive the highest quality of care once they turn 18. These so called "transition years" are a time when we need to do all we can to ensure that they become productive members of our province through post secondary education or by entering our job market. In either case the transition is much smoother for them if they do not have to fear for their health because they will be losing their ability to use and insulin pump.

Ontario has expanded their existing program into adult clinics and maintained the same qualifying criteria. This means that money allocated for the program can quickly go to work for those living with diabetes rather than being lost in bureaucracy. Newfoundland and Labrador could easily do the same thing with equally beneficial results. This province has recently been able to celebrate their change in status from a have not province to a have province. It is our province's responsibility to its citizens with diabetes to continue to assist them by following the Ontario lead and expanding insulin pump program to include adults living with diabetes.

Let's continue to be leaders in Canadian health care. 

August 27, 2008 My goodness have we ever hit the ground running! The media attention that yesterday's press release generated has been great and will only continue to get better. Please, if you have not done so already, email or call your MHA and ask that he/she support a program of insulin pumps for adults who are insulin dependent. We are looking at a figure of approximately 2000 adults (although that is a very loose figure). These are our children. They have a right to quality care. We have the attention of the media at the moment. We have the concern of the masses. Now is the time to continue to strike and see this happen. Diabetes Advocacy is continuing to press forward with specifics on how this will be cost-effective for the provincial government. We will continue to try to get a meeting with the Premier's office and that of the Health Minister to show them the true benefits of insulin pumps both for the patient AND the province. This is a vital program that MUST go ahead. Please help us!! Get involved. Let people know that we are serious. Let us be the second province in the country to provide help to our adults living with insulin dependent diabetes. Let's show the country that here in Newfoundland and Labrador we care about our people.

August 28, 2008 We are only as strong as the people we have behind us so please consider standing with us and letting the government of Newfoundland and Labrador know that we must expand our insulin pump program to include adults. If you are a parent of a child with diabetes, if you have diabetes, if your friend has diabetes, you should be contacting your MHA and asking them to support this expansion.  There are no real estimates of those adults living with Type 1 in the province. We can guess between 2500-3750 but that is only an educated guess. We know the benefits of this program--people back to work, better control, less complications. This means more tax money staying in the system and going into the system. 

People have asked how long this program would continue and the answer is simple...until a cure is found. Does that mean that it is not a viable program? No it means that we need a cure and in the meantime it is in our best interest to keep our citizens healthy and productive members of society.

Please send in your letter. Make your phone call. Ask your friends and neighbours to join in. Feel free to copy our request but do not stop until our government joins Ontario in covering insulin pumps for Insulin Dependent Adults in this province.   

August 29, 2008 Back to school! I hate this time of year. Its not the huge dent that my kids put in my wallet each year because they have suddenly grown out of every piece of clothing that they had in June. Its the pain that I hear about when parents of children with diabetes are sending their children off to school. Once again, I have parents calling and emailing me because their schools are refusing to assist their children with diabetes. It is truly heartbreaking. Schools are required to look after our children like "responsible parents" but how responsible would we be as parents if we did not test or inject our children? That is what is happening in some schools. 

The fear is understandable but specifically worded care plans would alleviate both worries and liability for both parties. It should be simple for parents and educators to meet and establish guidelines for care specific to each child. Age and development play a huge role in what is required. My son needs less support this year than he did two years ago. Now he needs to be protected when taking exams rather than being watched to ensure he eats his snacks. We have issues at all ages. One day there will be understanding across the board. One day awareness will be at a point that assistance will be offered rather than fought for. One day I will be better paid for this fight but in the meantime, I will settle for helping and doing all I can to ensure that these families are able to have a positive experience when they are going through our school systems. 

August 31, 2008 As many of you know, Diabetes Advocacy only exists with the support of purchases made at our Store and the occasional industry related ad. (Don't forget to watch for our Diabetes Advocacy T-shirts and to send in your submissions for our 2009 calendar!!! We are hoping to be able to bring it to you in English AND French!!!) We do what we do out of love and need. There is such a huge need for help and change that we cannot imagine doing anything else. That being said, I must admit that every once in awhile I will receive an email that will bring me to tears. Today is no exception.

I have been blessed to receive a few emails over the past few days praising the site. I have also had a lot of support for the concept of a provincial pump program for adults. This is of course motivating me to do so much more...and believe me its even got my mind working at 2am on strategies when I should be trying to sleep because I have to test Liam at 2:30am.  I have been working to help a family get help for their son in school and have another Mom who needs to prove how much time it takes to look after a 5 year old with diabetes. There are also other projects on the go that hopefully you will hear about one day but a note the other day made me stop. It made me pause. It made me shed a tear and it makes me want to work that much harder. The note simply said the following "Thank you very much as we just lost our nephew who was a type 1 Diabetic since 9 years old."  They were purchasing Diabetes Awareness car magnets and happened to live in the same town as my dad and sister. I hate when this disease takes our loved ones. I wonder if any of us have not lost someone to this disease?

As I said, it made me want to work harder. We need to give those living with Type 1 diabetes the best tools to keep themselves as healthy as possible. I will not lose another friend and my son will live to be an old man!  

September 2008

September 1, 2008 I am trying to get ready for school. My boys are with their father for the day so its suppose to give me time to get sorted. Funny but I still hate back to school. I used to love fall. I used to love back to school. Everything was crisp and fresh. Books were new. Clothes were new. Life was simple. Now I am a parent and  it  just gets worse. Each child needs an entire new wardrobe and those crisp new books cost more each year despite the wonderful sales I manage to find but in all  honesty that is the least of my concerns. My oldest son is starting high school this year. First how did he grow up so quickly? I don't feel that old so how can he be going to high school? The school is further away. I don't have the same intimate connection with the staff. Its new and  a big change.

That should be all a parent worries about but that isn't the case when your child has diabetes. I am lucky in that Liam will have the same teacher he has had for the past 2 years. He is well versed in Liam's care and not afraid to contact me when in doubt. Despite that level of confidence I am still hating getting him ready for school. I am filling his  knapsack with his school supplies. I am putting the second half of supplies off the the side to be carried on a separate day...I would like him to still  have a back at the end of the first day of school! I wish that that is where school preparation ends but it doesn't. I still have to get all of his diabetes stuff ready. I have to find the school Glucagon, update his diabetes folder, fill up his kit for school, find his school meter, make sure he has hand wash and extra glucose tablets, etc. I'm tired. I don't want to do it!!! I have so many fights on the go! So many projects. I want school to be simple--and really for me it is but there is still things that have  to be done, items printed. I just want to go back to bed and wake up in Utopia!  

September 8, 2008 For those who pray, please do. For those who simply believe in the power of positive thought, please send them to a family in need. Yesterday I heard from a family who has a son with Type 1 diabetes. The son has never been great about taking care of himself. He was diagnosed in his teens and hates being a human pin cushion.

He went to work, had insulin in his body, became ill, and began to seize.  No one knew of his condition or how to deal with it. He did not carry glucagon with him.  He seized on a metal floor for an unknown period of time and didn't receive glucose for about an hour and a half. He is now isolated in the hospital with severe swelling of his brainstem.  His prognosis is unknown but things do not look the best. He is young--too young for this disease to end his life. He is physically strong and hopefully will be able to repair his body and have a new respect for this horrible, deadly disease.  

September 11, 2008 For those who have been asking, the young man that had the seizure the other day is still progressing slowly. His fine motor skills are very limited. His short term memory has holes. He has done major damage to his brain. Only time and a lot of therapy will tell how far back he will come. His glycogen stores have been depleted and his body is basically pretty battered and bruised but most importantly, he is alive. He can talk. He will live another day and hopefully will realize just how close he came to losing it all.

I was talking with someone about parts of this situation today. They told me how lucky I was. They said I didn't know what it was like to go through something like this. Basically they respected the work I did but I had it easy. To say I took exception to these statements was an understatement.

For those who haven't read around enough to know, this disease tried to kill my son when he was two years old. He fought back and he lived. Since that day I have worked around the clock to keep his control the very best I could. I learnt as much as I could about the disease. I tested. I measured. I logged. I made this my full-time job. My son is not healthy because of luck and to say so is a slap in my face. My son is healthy because we work darn hard at it! He has stepped up to the plate this past summer and I am very proud of him. He doesn't ignore as many alarms. He counts his carbs and is even learning when to make changes. Times are going to get tougher as his body begins to change and hormones fight us as well but we will continue to work hard. Its the least I can do for my son. Its the least he can do for himself. I have begun to tell him that this is his disease and his body. Its the only one he has so he had better do all he can to keep it in the best of shape.

Being 11 now, his response is simple, "Yep Mom, I've got to be careful. This is the only body I have and I already have a crack in it!" Boys! 

September 16, 2008 We seriously need something done with our health care system. That isn't to say that we don't have some wonderful people in place but we need more and desperately! I have mentioned the young man who had the terrible seizure. He is now out of the hospital and on his own more or less. There is no way this young man does not have severe issues to overcome. He was not taught how to deal with his lantus regimen and had no grasp of his carb to insulin ratio let alone what it is. They sent him home with a loaded gun. I am not sure that he would have the cognitive ability to do this on his own at this point. I know he is an adult but why was someone else not trained with him? If they really want to save themselves some money, why not send him home with some home care. Have the homecare worker learn about diabetes and assist him in injecting and monitoring.

I could have things wrong but it appears that this young man has been left to go home and repeat old habits. He needs education. He needs counselling. He needs understanding. There is so much that should be done. So much that should be watched and he is only one person.

The health care system scares me. I have had people tell me that they have learnt more off of this site than they were able to get elsewhere. I am not a health care professional. After all of these years I should have been a doctor but I am not. I am a mother.  My scientific background consists of grade 12 biology, neuropsychology, and psychophysics in university. That does not make me a medical professional. I do read. I listen. I learn. I travel. I try to listen to and speak with some of the best medical people in the business and am proud to be able to do that but I wish I could share more. I wish I could do more.

September 17, 2008 Have I said that I hate diabetes this month yet? It is so true! The other night I was getting ready to go to bed. I tested Liam. He was 3.8 (68). Okay come glucose tablets fed to my sleeping child and I would be set. I waited. I tested. He was 3.3(59). Mom is not happy. I give him more glucose, again he continues to sleep. I have another 15 minutes to kill so I make a phone call to someone in a different time zone. We talk for 15 minutes. I test again. He is now 3.6(65). This continues for about an hour and half! When he reaches 4.2(75) I go to sleep for a few hours. I was beaten. I was sure he had eaten a half a bottle of glucose tablets.

The next night I am waiting for a repeat performance. All is perfect. Hmmm. The diabetes gods are teasing me. I wait another night. He is running a little high. This sucks but there must be a reason. Last night he is high and needs a correction. I am really not overjoyed. Well actually in my demented little mind I am. You see I am having Liam's fasting blood work done tomorrow and he is at Dad's tonight.  If he goes low I either have to wait or scrap the blood work. Liam would go for scrapping the blood work. The child has been having blood drawn for almost NINE years. He uses Emla (numbing) cream for the site. The needle is tiny. He FREAKS every time. He is now eleven for heaven sakes and still its an ordeal. I guess if there has to be one thing for him to have a hard time with when it comes to diabetes care better this than a lot of other things! 

September 19, 2008 I know she was just clerical staff but people really do scare me. Yesterday Liam went in for his blood draw.  Before he had his blood drawn, we went and registered. The lady asks the question that has boiled my blood for years now...is your son on pills or insulin? Let me think? He has been coming here since he was 2 and from 0-2yr I did nothing but feed him chocolate and make him obese so that his genetic predisposition to T2 would appear at the ripe old age of 2. The fact that he weight 22 pounds or less at that age and was a decent height means nothing. Yes, he is on insulin. Next she says "and he is fasting?" Yes he is fasting. "And he had his insulin this morning?" Yes he has had his insulin this morning. "They would let him have his insulin before his blood work?" I explained that everyone makes a background insulin that must be in the system. If I didn't give him that I wouldn't be waiting to see her I would be in the ER at that moment instead. She finished our paper work and said that Liam would be next. She still had a look of terror on her face. I know its not her job to know about diabetes but she has worked in that spot for as long as we have been going to that hospital (9 years+). She has to have some clue by now. No education regarding diabetes in the health care system and the general public is not a problem at all. OY!!!!

September 20, 2008  We are making progress!!! I received a letter from the Minister of Finance last week. He has agreed to look at insulin pumps for adults in their 2009 budget consultations! Looking doesn't guarantee us money but it does suggest that they are taking our request seriously. PLEASE IF YOU HAVE NOT CONTACTED YOUR MHA ABOUT INSULIN PUMPS FOR ADULTS IN NEWFOUNDLAND AND LABRADOR, SEND IN YOUR LETTER, EMAIL THEM OR CALL AND HAVE A CHAT!  There are too many young adults who are not yet in the work force who are having to chose to drop their pump use because they can't afford it. Other children are getting by but have to look at jobs outside of the province to be able to afford their medical supplies. That is not right! Keep the pressure on. Don't let them forget about our adults struggling with this disease. The cost is minimal compared to the savings.

September 28, 2008 I know my motto is suppose to be "as long as he comes home alive".  I know that things were done okay. I know that he did come home alive but I still want to cry. Yesterday was Dad's time. Liam was treated to a meal of chicken wings. This is not the healthiest part of the chicken and the way people cook them make them even less so. He was bolused for only half of the carbs in the chicken.  Problem number one. Liam then spent the night at a friend's house. I hate that but he is an 11 year old boy and his mother needs to allow him his freedom and the child's mother was willing to wake him up in the middle of the night to have him test.

Problem number two...when he woke up to test he was 21 (about 300).  Mom called Liam's dad and he picked him up. Liam was soon ill. My guess is ketones but they were not checked for.

Problem number three...Dad decided that he should give Liam 5 units of insulin via syringe (he has learnt something). Liam says no way Jose! and Dad gives him 2 units. 5 units would have sent him into a negative number if that were possible.

Problem number four...Dad tests in 20 minutes. This is not a low. Insulin takes time to work. Liam is not newly diagnosed. Dad should know this by now but we will be thankful. Liam is coming down one hour later. Dad does then test 2 hours later. After that Liam is on his own and no test is done for at least SEVEN hours. I am not perfect. I have occasionally slept for six straight hours without testing Liam. You could probably count those times on one hand.  I generally test every 4 hours..day and night. As you can see I might get overtired now and then.  Dad tends to test during the night and then never again until whenever Liam wakes up to test again. He will let him sleep until noon if he wants so there can be 8 hours of no testing. Not a problem. No problem at all except that it really does kill me. I have been told that I have to accept that we have two VERY different parenting styles. Its amazing how difficult that can be to deal with.  I guess it doesn't help that I have been going through my life with diabetes and compiling all of the highs and lows.  This just adds to the lows.  

September 30, 2008 I hate diabetes. I hate it. I hate it. Yes, I am stamping my feet. Yes I am overtired. Yes I could use a tropical getaway but I still hate this disease! Today I had an appointment to get my hair cut. This means that I drive an hour there and an hour back. I also did some shopping. My boys knew I was doing this. Just after noon my cell phone rang. It was Liam's teacher.  He had run out of insulin. That made no sense! How could he run out of insulin AGAIN! I know that there was over 37 units of insulin in his pump this morning. What the heck was going on? Was there a problem with his pump? Where was the low cartridge alarm? He does not use 30 units in a day. Thankfully I was within 10 minutes of my house. I said I would stop, fill a cartridge and head straight to school.

Liam would be kept in school until I got there. I arrived and was still perplexed as to how he could have gone through so much insulin. I would download the pump history when he got home. I got it all fixed up and stepped outside to speak with his teacher. He informed me that this was the first time that Liam had really looked scared.  He knew that he had NO insulin and thought I would be gone until late. He knew what would happen to him. Both the teacher and I were dying inside. We hated that he had to go through this.

We talked a little more and Liam's teacher thanked me for all I had brought to the school in regards to diabetes knowledge.  He said that as much as he knew from having a parent with Type 2, it was nothing compared to what I had taught him. He said he could even see the difference in other children who didn't receive the same care as Liam.  I had mentioned that I had been working on putting together notes from our experiences.  He thought it was definitely a book idea and one that should be read by all teachers who have a child with diabetes in their class. I really appreciated the vote of confidence. You just never know maybe I will write that book that will change the world yet.

October 2008

October 3, 2008 Liam had been ordered to take charge of his diabetes by his doctor and he was stepping up to the plate. He was not happy when he was told to do so. He slouched in his chair and did his usual mumble. His doctor explained to his that now was his time to learn when Mom was still there to help him and guide him. Liam was not convinced but the summer showed him that he could do it. As far as he had come though, he still had not done everything that his doctor had told him. Liam had yet to put an infusion set into his body. He had been testing his blood since he was three. He could get the pump ready. He could prep a site but he would not put that last needle in his own body.

It was Friday night and time for a site change.  Liam would see his doctor on Monday morning. He still had not put in an infusion set. He gathered his supplies while I was fighting with the program for his pump on my computer. As he worked he began to talk, “you know if we were on a leg site, I could probably put in the infusion set myself.” I steadied myself in my chair. I could not believe what I was hearing! I simply said “So do a leg site.”  Liam decided that he would. I was in shock. I couldn’t believe that Liam was going to take this final leap. He really was starting to look after himself. He would be safe when I was away. I was ecstatic! I came over to supervise. He got the infusion set ready. It was an Inset which technically has an automatic injector built in that I never used.  Liam decided that he would. The trick would be to remember how in the world it worked. He pulled it back and it was locked in place. He set the site in the location he had prepped. Together we worked to figure out which part of the site to press to release the set into his leg. Suddenly it was done and Liam was taking the insertion needle back out and finishing the final steps. He said “That didn’t hurt at all! It was way worse when I did it last time. This is easy.”

I was so proud…and so heart broken. Yes my son was growing up. He was taking responsibility for his disease. It was his disease. I had been preaching that to him for the past six months. Despite that, he was eleven years old. He knew about healthy eating. He knew about “cowbohydrates” before he knew his ABC’s.  He knew about high cholesterol. He had heard of deaths and seizures from diabetes. He knew about highs and lows. He had been lancing his finger 8-10 times per day for almost nine years. He had been injected too many times to count. He understood that the insulin in his pump literally kept him alive. He knew what his disease meant almost as well as I did.

If he was growing up, then where did that leave me? My role in his life was moving from caretaker to guide. I began to feel my own age and it terrified me. My children were growing up. I had spent so many years living for them and teaching them. They were now getting ready to deal with life on their own.

October 6, 2008 Last night I decided that I was going to join those parents who don't test at night. I was exhausted. Liam was high.  I was starting the beginning of a very long week. I had the baby monitor cranked and I just wanted sleep. I am so funny!!! I dozed off. I woke up. It had to be my 3am wake up. None of that. I was going to go against everything that I believe in and I was going to sleep! Back to sleep I went. I woke up again. It had to be 6am. I would be up soon. I was not going to test. I was sleeping. Wrong! I tossed. I turned. I tossed some more. I finally looked at the clock. It was 3am!! I was not getting up. I was sleeping. I was going to sleep if it killed me. I needed sleep. I had a long day ahead. I tossed some more. I turned. I slept on top of the blankets. I slept under the blankets.  I slept on one pillow. I tried three pillows. I tried no pillows. I gave up! I got out of bed. I tested Liam and funny but I fell asleep almost right away. Was it the fact that I had exhausted myself tossing and turning or all of that guilt that was keeping me awake?

October 7, 2008 Yesterday had some incredible highs and lows. Liam saw his diabetes team. We have been seeing these same people for over 8 1/2 years. Recently our dietician changed. The new one is great but it was sad to see our first one leave. As we were finishing up yesterday we were told that our CDE nurse had taken a new position and would be leaving in November.  We were shocked! She has held our hand since diagnosis. I have enjoyed conferences with her. It will be a real loss to us but she felt it was time to move on.  I know one of the possible replacements for her and she would be okay but retraining a CDE? Its not an easy task. We have a great repore with our old team. I said well at least the secretary is the same. They looked at me and said she retires next year! I said that this is not good.We are outlasting all of our team!!!

We headed over to the doctor's office and had a great chat. Liam's A1c was perfect. Mom was very proud. All of his other readings were well within range. Life was good. As we were leaving  I told Liam well at least we haven't lost his doctor. His doctor asked what I meant. So I explained all of the changes at the clinic. He was unaware of any of them and equally as depressed. He said now we have to retrain all of them! I guess its called change but I like my team knowing me, me knowing Liam's team and no fuss when we go in. Oh well, I am sure it will all work out for the best.  

October 11, 2008 I just looked at Liam's log book from school. I had to go out of town while he was at school the other day and left early in the morning. He had spent the night at his father's and I knew that he would be stopping home on his way to school to get clean clothes. I am not sure why he doesn't keep any there but who am I to ask such silly questions. When I got home there was a box of opened test strips sitting on my table and I was impressed that he remembered to grab some on his way out.  In reading his note for school, he hadn't! His teacher had driven him home to get some strips at recess! Thank heavens for a small school and knowing your teachers!  I sent the teacher back a note giving him permission to kill my child and asked Liam why he went to school with no strips? He said "I didn't." I replied that if he didn't why did his teacher have to bring him home to get strips? He said "because I went to school with ONE strip." OY!!!

October 12, 2008 There is just never enough time in a week let alone a day! I have been working on three projects and life is passing me by. Add that to regular life with its own demands and we need a longer day. I have not given up on the Adult Pump Program so please continue to talk to your MHA and let them know that this is an important and cost effective issue. I also am in a mad panic to get our new 2009 calendars ordered. I have been asked to do some in French as well which has added new fun. I am glad to be able to offer it but getting the picture sizes and program down pat for English has been a challenge. I am hoping the French will actually be easier. I am also trying to ensure that I get just the right amount of calendars. I had a lot of people interested in T-shirts until I bought them. I don't want the same thing to happen to the calendars as they "expire" as such.  Calendars will be ordered on the 14th.   There will be some extras ordered but you will have to be quick.  Extras can be ordered but my price will go up after that so sadly the calendar price will be slightly higher as well.

October 13, 2008  When we saw our diabetes team last week our nurse told us that Liam was due for a growth spurt. I think she cursed us.  I have been fighting huge highs every night for days. I am testing Liam literally every two hours all night long and still only keeping him below 20 (360). I have upped every basal three times and upped the carb to insulin ratio. Its time to up it one more time. I am getting exhausted. This is crazy and yet when he spent the night at his dad's he was low! I guess he was up late and playing hard with a friend versus doing homework and just wrestling with his brother now and then. No wonder I have to color my hair. If I was a man I would be bald by now! 

October 15, 2008 Another day and Liam is still wonky at nights. I thought we were doing well. The first part of the night saw him at 11(200). I could live with that for now. I waited for him to drop. He doubled instead--crap!!! Yep, 22 (400) and my nerves!!  On the upside, a correction did bring him down nicely this morning. He will be with Dad tonight so watch life just be peachy!

As for the calendars...all done!!! What a lot of work to get the program to work but hopefully the results will be as great as they appear. I will let everyone know when they do arrive.  If you forgot to reserve your's I did purchase a small number of extras in both French and English. They also have both Canadian and American holidays on them for those looking at the English versions.

October 18, 2008 Stop the world, I want off...an entire night of Liam in the 8s (144) all night long!!! Oh yeah happy dance here baby!! One good night! Yes, Yes, Yes!! Weeks of highs and a mess and Mom is finally a pretty doggone good pancreas!!! Oh yeah!

October 24, 2008 What have I said about kids who get too big for their britches? Liam is doing most of his own site changes. I still fill his insulin cartridges but he does everything else on his own. We have started talking about changes that need to be made. I am trying to keep him more empowered and maybe that will help me when he is away from me. Or it will simply cause me torture when Mr. Smarty Pants is here with me...

He was doing a site change today. He couldn't get the Inset to release so I was going to do it. I showed him where to release but he still wasn't getting it. I tried and still nothing. We got it to release and I said I would do it manually but we wrecked the site first. We get out a new site and Liam starts to laugh his head off at me. "It might work better if you were pressing the buttons to release the site. You see these two blue arrows? They are pointing to where you need to press and look....They are on ALL of the sites!" Smart Alec!  

October 28, 2008  What a night! I was talking to a friend who had a bg level of 24(432). After our conversation I went and tested Liam before heading to bed. He was 22(396)! Was there some sort of competition?? I checked Liam's site and all seemed okay. I gave him the correction and headed off to bed for a few hours. Before I could fall asleep I heard someone banging down the stairs. I waited to see who it was. Dang! It was Liam. I told him to test. I was hoping that  he had dropped but I knew if he was up already that things did not look very well.  Sure enough he went straight to the fridge for something to drink, tested and then threw up before I could get to the washroom! Crap! This was going to be along night! The reading finally registered and he was now 26(468). I had more nasty thoughts going through my head. I checked everything again but this time remembered to look at his tubing. It was full of air! I filled the tubing and injected Liam. A few hours later he was down to 19(342). I gave the correction through his pump and prayed for the best. This morning he was down to 8.5(161). What a relief!

October 31, 2008  Happy Hallowe'en!  I don't know about others but I hate this day. Yesterday Liam was low most of the time that he was home. He had a lovely 2.2(40) in the early evening and was under 4 (72) two hours after his night snack. I reduced his basal and filled him full of juice. As I was testing and saw the low I wanted to cry. Why does this happen? It will be Hallowe'en and how safe will he be if he is running low? He is 11 now and doesn't want Mom going out with him for Hallowe'en.  I also had the terrible thought of my life will not be normal until he is on his own..that is when I wanted to cry. I have an end date for his care...Liam doesn't. He has to care for himself for the rest of his life! How could I even have that small thought? What sort of a parent am I? Yes, I will have taught him. Yes, he will have the best technology has to offer him.  Will that be enough? It will have to be and it kills me.

Today we have things worked out. Liam will take my cell phone. I will check on him every hour and go out and test him. I am also going to do some basal reduction before he goes anywhere. Have I said how much I hate this disease? 

November 2008

November 1, 2008 I have survived another Hallowe'en but I won't say unscathed. Liam dropped to 1.7 (31) last night after being treated for a low! I know I was shaking. I couldn't get him to drink fast enough.  I was terrified that the next step would be glucagon. I had reduced his basal rates. I had reduced his carb to insulin ratio.  Obviously it still wasn't enough. As I was waiting, I was also talking to a friend who has Type 1.  It was suggested that I need to start to teach Liam to wake up and what his lows feel like when he is asleep. I have never been a big proponent of this because people are known to sleep through a low but he did make a certain amount of sense. He suggested that I have trained Liam's body to be complacent at night.  Liam feels his lows when awake but he will sleep through a hurricane. I am not sure who is right but it may not hurt to be safe. I just hate waking him up. Isn't one sleep deprived person in the house enough?

November 4, 2008 November is Diabetes Awareness month and I am usually very on the ball. I do have calendars and such.  There are always a few ideas rattling around in my head.  This is however a bad time for me to hit that proverbial burn out wall. That's the time of year when I look at my life and wonder what the heck am I doing? Its when I want to walk away from it all. I want to shut down the site and move off into obscurity. I want to hide from the world. I have had diabetes issues, old issues, health issues, personal issues, teen issues and I want it all to go away but its funny I can no longer do that.  I don't have a clue what tomorrow will bring but I have a pump program to see happen for adults. I have children with diabetes who are still being treated unfairly in schools. I have a book that is sitting on my computer waiting for me to finish it up and find a publisher. I have son who still needs me to guide him. I am exhausted. I have been kicked around but I am foolish and still go forward.  Crawling under the blankets looks good but I guess its not in the cards for me at the moment. Back to work...

November 8, 2008 Yesterday we went for our family flu shots.  We got into the doctor's office a little early but he took us in right on time. As we were waiting for the doctor to come in, his receptionist brought in three syringes filled with the flu vaccine. We watched the doctor go by a few times and were certain that they had all stopped for a coffee break. Liam said that he could inject his brother an myself and then I could inject him. I said to dream on! He doesn't even inject himself! I really didn't want him to have a syringe in his hand and try it out on me. It could be revenge and he may stab me repeatedly!

After our shots we were going out to supper. We had decided on our favorite pizza place.  They were having a special so we had a tonne of pizza, salad and garlic fingers. Liam had been concerned about his site before we left home and had brought a spare but his numbers had stayed close to in range. When we got home life was VERY different. He was in the washroom steady and had drank a gallon of water and Crystal Lite. I suggested that he test as he seemed high. He was that!! We changed the site right away and I gave him an injection. He slowly began to come back down but was still living of of Crystal Lite.   When I said something my ever so smart child had an equally brilliant comeback for me. "Mom, I have to drink a lot to get rid of my ketones!!"  I informed him that water would do the same job. I also told him that we had caught the high very quickly and he probably had not developed any ketones. Nice try though! 

November 10, 2008 I recently discussed the concept of  “teaching” your child to wake up during lows at night. The idea being that if I continued to let my son sleep when he was low, I was training him to do this later in life and putting his health in danger.  The concept did seem to have some validity and the experiences of others regarding this phenomenon have been mixed.  Nonetheless, I have now begun waking my son to drink a juice when he is low. I tell him repeatedly that he is low, he drinks and falls right back to sleep.

Last night I wondered if it was possible to teach a parent to wake up for lows. Like many people, after all of these years of not sleeping through the night, I no longer set an alarm. I know I will be awake ever 2-4 hours all night long. Last night was the first night in ages that I had a good sleep. I didn’t toss and turn for four hours first. I went to bed and slept! I did however wake four hours later and knew I had to get up and test. I was not overly thrilled to be doing so but I stumbled out of my room, grabbed the meter and supplies, and headed up the stairs to test Liam.  When I tested him he was low! I was obviously very glad that I had woken up at that time. As I got him to sit up and drink a juice I wondered who was trained to detect his lows at night?? 

November 11, 2008 Every day I receive various alerts that I have set online. I was watching a show on internet security months ago and this was one of the ways they suggested to protect yourself and your family from vicious internet attacks. As I have been victim to a few such attacks, I try to do all that I can to protect myself and my loved ones. Its always interesting to see where your name will pop up.

This morning I got an alert that my name was featured in a blog. That rarely means that it is me but in this case the introduction says “My son nearly died from it, and so did Barb Marche's (story below... just scroll a bit). It's not uncommon for children newly diagnosed with Type 1 Diabetes…”  Now you know that caught my attention but I couldn’t find the post!

I finally gave up but was very impressed. You see this post was again on an author’s blog site.

November 13, 2008 My drama king strikes again! He took out a site and had a “gusher”. You know, those sites that pour blood? This one squirted blood all over the inside of his shirt. He was not impressed. He showed me his shirt and was positive it was ruined. I told him to run it under cold water to wash it out. Funny but just getting it wet didn’t get the blood out. I scrubbed his shirt and listened to his continued complaints. It seems that the sites should come with warnings…may cause you to ruin your shirt and bleed all over the place. Now he has had two such experiences in almost 5 years of pumping. Not exactly a great need for a five star warning. Yes, my son can be slightly dramatic at times!

November 18, 2008 I should really learn to take my own advice. I always tell newly diagnosed people to take life four hours at a time. If you get four hours of good bg levels, celebrate and move on to the next four hours. Never look at the whole day. If by some miracle you get a good day then you really celebrate but don’t get upset if you don’t see that. Four hours at a time is how you live.

Yesterday Liam came home from school and was in range the entire day!! It was unheard of. I was over the moon. A real victory! We had beat the diabetes gods for one full school day!! And then the night began…

He stayed in range until supper. He was pretty good after supper. He was good at bedtime. He went to sleep and I tested him. High. I corrected. I tested again before I went to bed at 2am. High. Dang!! I corrected again and worked on trying to sleep for a few hours. When we got up…perfect!

 I was choked at the highs. I was so disappointed and then I remembered my own words.  We had had six and a half good hours at school. We had had an entire evening of good readings. It was only one section that was bad. That is nothing to sneeze at. I had put up a great battle that day. My strategy was winning. I had kept my son in range for the majority of the day. That was a huge victory. Mental slap upside the head and go on with my day! 

November 19, 2008 Lately I have had the terrible realization that my youngest son is growing up. He is no longer that small little boy but a young preteen. The fingers that I would lance and cover in blood are now bigger and the drop of blood looks that much smaller. He fights a little more when I test him at night and the fight is a lot stronger in those larger arms. He is doing his own site changes, and making informed decisions about his care. He is making his own meals and knows the carbohydrate counts off by heart.  

To watch all of this brings both pleasure and pain. I can’t believe my baby is growing but I am glad I have taught him so well. The truly scary thing is to see how much more insulin he uses in a day. He now has basal rates of .8 units per hour. That was unheard even a year ago. I would be terrified to see that much insulin in his system and now it is what keeps him in range. His breakfast this morning required over 13 units of insulin. It wasn’t the large number of carbs that he ate, it was the fact that his carb to insulin ratio is so low.  

I am starting to feel like I am living that song “Turn around and your tiny; Turn around and your grown...”  

November 27, 2008 I know I have been really slack here lately. There has been a lot going on and so little time.  Ontario implemented adult pump coverage this summer.  BC began a pump program for kids this fall. I am still working with others to see an adult pump program implemented in Newfoundland and Labrador. I was fortunate enough to have a great meeting with one of the provincial Cabinet Ministers a few days ago and was very happy with how things went.  We were given very clear direction in moving forward and are looking for help from volunteers throughout the province to do a very short presentation to the pre-budget consultation committee when they reach your town. If you are interested or available, please contact us.

While I have been out and about, Liam continues to take a much more active role in his care. It is hard for Mom to let go but made a little easier when I am busy. He did a site change completely on his own the other day.  The site was good but for some reason he forgot to fill the tubing. Mom tested him during the night and found the air. I was able to correct and bring him down right away. He woke up the next morning and blamed me for him being up all night...he used the washroom once. I told him it was his fault for forgetting to fill his tubing. Nice to learn while Mom can still help manage errors.

December 2008

December 5, 2008 We always work to make sure that our children with diabetes are not excluded. We try to ensure that they never miss things because of diabetes.  We work to make sure that there is nothing that they cannot do...but then the diabetes gods remind us that its not always so.

This morning Liam was going to sleep in so imagine my surprise when he was the first child up. He didn’t have to catch the bus until after 9:30 and had planned to lay in his bed until 8.  At 7 he was up with a blanket in tow. I was kind of surprised but not nearly as surprised as when I saw him coming to the table with an infusion set and saw the old one sitting on the table. What the heck??? He was fine at 3am. What had happened? Some time after 3 his site had fallen out.

Liam had woken up high. He felt rotten because he had been in good range for days and instantly went to work.  He got all set to put in a new site when I remembered that he needed a new insulin cartridge. I got one ready for him and he continued. He couldn’t get the inset to release and for a change I got to tease him...he wasn’t pressing at the arrows!! We got a new site in and he laid down on the couch for an hour. He was pale but in good spirits.  I began to wonder if he was going to make on his school outing after all. We checked for ketones and Liam remarked that if he stayed high and had to use the washroom a lot that he couldn’t go on the trip. They would be on a bus for an hour with no washrooms on the way.

We checked for ketones again--just barely a trace. He used the washroom to drain every ounce of water in his body.  We packed an extra water bottle. He had extra insulin for the basal that he missed when the site fell out. He was off! Thank heavens. I seriously thought that he was going to end up missing out because of diabetes.

December 15, 2008  My baby is growing up. What the heck am I going to do??? I had to go to Liam’s school today to pick up some things. I saw his teacher for a minute but there was nothing exciting to report. I picked up my stuff and headed home to get to work. At noon I had to go back to school and pick up Liam because it was raining. I had to have a quick meeting with the principal and ran into Liam’s teacher again in my search.

His teacher told me that Liam’s site had fallen out. My heart stopped. How long had it been out? Since 10:30am….It was noon!!! What were his readings going to be? Why hadn’t they called me? My heart was racing! The teacher proceeded to tell me that Liam had changed the site himself and they need a new site for school. I was in shock. He had changed his site at school. He didn’t call me. He didn’t need me. He was able to take care of everything on his own. He was confident. He had success. There were no highs from missed insulin. He didn’t miss a beat. I had trained my baby very well. He was becoming self-sufficient. I am so proud of him!!! What a great Christmas gift!

December 16, 2008 What a night! Yesterday was Liam’s Christmas concert and for whatever reason, it always creates a case of chaos in my world. When all was said and done, we vegged before crawling into bed. I tested Liam before bed and he was perfect. I woke up at 2am and tested him again. He had dropped a bit but he had been remaining quite steady lately so I didn’t overly panic. I went back to sleep and received a text message at 4am. I figured that since my heart was pounding out of my chest from the text ring, I would get up and test Liam. He was low! I was very glad to get the rather upsetting message. I woke Liam up to drink his juice as per a friend’s suggestion. I went and read a book and waited. I went back to check him. Yes, he had gone lower! More juice, more reading, more testing. Finally he was in range. Perfect this morning but Mom is still completely beat out.

December 18, 2008 People talk all the time about letting go as a parent. There is no difference when you are a parent of a child with diabetes. Actually there is some difference because you are also warned that you must let go and remember that diabetes is your child’s disease. It is not your’s.  That is very hard to deal with. It also is amazing to see how differently diabetes is dealt with.

I am seeing how well—for the most part, I have taught Liam about his disease. I have always been very open about diabetes and diabetes care. I live to advocate and educate. Liam on the other hand is public at home but very private in public. I hadn’t thought much about that until yesterday at school. The parents had put on a Christmas dinner for the staff and students. Liam ate and we had calculated his bolus. He walked away and hadn’t bolused. I didn’t get it. I know Liam, if he walks away he will forget to bolus.  I reminded him to bolus and he turned to the wall and took out his pump. A child that wasn’t in his class was in the room where they had been eating. He didn’t want this child to see his pump. He quietly did as he was told and then went out after his friends. Its okay for him to expose his pump around people he knows and who know him, but he is much more shy when around people who may ask questions. That is something I will have to work to remember. Very tough one for Mom! 

December 23, 2008  “Mom, you realize that you are very lucky that I have diabetes?  I mean without it you wouldn’t have all of those pictures of me to make the Diabetes Advocacy calendar. Diabetes and I are the reason you have all of those other pictures on your website. We are the reason that you have met all of those great people from around the world. We are the reason that you travel to all of those cool places. We are the reason that you are up all night. Without diabetes you would sleep like other people when you go to bed. You wouldn’t worry about me as much. Aren’t you glad I have diabetes?” 

December 25, 2008  For personal reasons, this was not a Christmas day that I was able to get into or fully appreciate. I received some incredible support from family and friends and was truly touched but the incredible Christmas Spirit that usually fills me on this day was sadly missing this year.  That did change slightly late tonight.

We had opened our gifts in the usual state of chaos. We ate our meal and headed over to a friend’s house for dessert.  When we came home the boys were back to playing with their new Wii games and other items. I began to put away a few more things and get myself sorted for what I thought could be an early night. Liam had made a Christmas card in school that had sat on top of one of my gifts. I was touched by the stocking that had our three names on the front but I thought nothing more of the card. I expected the usual “Joyeux Noel” inside and being a terrible parent, hadn’t read any further…until that night. I picked up the card so that it didn’t get lost in the shuffle and opened it up. Tears came to my eyes as I read “Joyeux Noel! I appreciate you getting up at 4am every night to test me. You make me feel secure.”  I had earlier had a meltdown about not being appreciated, etc and here was this card that showed how important he felt I was in his life—in keeping him alive. I wiped the tears and put the card in a very safe and special spot.

December 26, 2008  Pie plus baked goods plus a cold equals no sleep for Mom and a lot of highs! I kinda new it was going to happen but I was hoping. I thought we had bolused properly for the never ending supply of food Liam ate but I think that mixed with the constant cold we all seem to have was the end. Before bed Liam tested and he was running high. We decided to change his site because it was due to be changed today. Tested him later and he was coming down but still a little high. Corrected him and got an occlusion alarm. Crap! Wake him up, check the site and tubing, put Humpty Dumpty back together again, press restart and all was fine! Test again later in the night. Readings on the rise again. Correct some more.

 Always something! I think he needs some adjustments but Liam has decided that logging and sometimes testing, is just not something that he needs to do. Mom sees things just a little differently! I lost it yesterday and told him no problem, I would not be the only person who cares about his health. I can teach but if he won’t practice what I ask then he can live with the complications and the questions from his diabetes team. I wash my hands of it all!

As we went to bed last night, Liam began to ask about being high. What does it do when he feels sick and doesn’t even read on the meter? I said that is terribly dangerous and your body will start to eat itself. He asked if it will cause complications. I said yes, they will start small and you won’t notice but it will hurt you. He asked how I knew. I pulled the mother card and said that I simply see all! No, I doubt that he fell for that one but at least he was thinking about the consequences of his lack of action—not testing or logging so Mom can help make changes.

December 28, 2008  You know you live with diabetes when...you get containers for Christmas and the first thing that you do is make sure that the carb counts are posted on the outside of the containers!!

December 30, 2008 The year is coming to an end but some things just never seem to change. We have been fighting sniffling colds for about a week. They start to fade and then they come back. I am sure that the weather changing from 10C one day to -20C the next is a huge help in our ailments. Liam's bg readings are of course all over the map with highs and just in range being the norm rather than the exception. I have made some changes only to find out that food has been eaten and not bolused when he was out of Mom's sight. When will children learn that mothers have eyes in the back of their heads and they can never get away with anything for any extended period of time??

Besides illness however, I also noticed that Liam has geographic tongue once again! It is most common in people living with diabetes and almost looks like he has burnt his tongue and the skin is peeling off. It looks terribly painful but he rarely notices it when it occurs. We do a few rounds of anti-histamine and he is fit as a fiddle again. What a pain!

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