Blog

2008

September 2008

September 4,2008 For those who are wondering if I have dropped the insulin pump program idea...don't be silly! Actually I had come up with some great ways to get publicity and raise some money at the same time but I was told one step at a time. Its amazing when I am left alone for any length of time all of the great things I can come up with.Hopefully I will still get to use them at one point but first is finishing up my request to meet with the Minister of Health and Premier (and then of course figuring out how I will pay for my trip there! Oh well,one step at a time LOL!)

September 3, 2008 I am so proud. I have been asked to be an expert witness testifying about the amount of time it takes to look after a child with diabetes. I was asked to submit a letter with my "expert" opinion based on my life experience and fight for the DTC. I was really honoured but kind of nervous. Would I give them what they wanted? It went fabulously!! They loved what I gave them and I only had a small revision to make. I was honoured to be asked and considered an "expert" and then to have such a positive reaction to what I submitted really made my day.  A new title to add to my resume...expert extrordinare! 

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!

August 2008

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! 

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 liabilty 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 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 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 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 24, 2008 Another idea on the go! I have had some great response about the idea of a diabetes calendar. So far the ideas consist of kids drawing about life with diabetes, "you know you live with diabetes when...", and "Murphy's law of diabetes". I am willing to see what we can do to blend or specify but am learnign to using the first two ideas to avoid any copywrite issues. The lowest calendar costs I have been able to find are $15 for a 8.5"x11" calendar (fully opened) or $20 for a 8.5"x22" calendar (again fully opened). Before I ordered these I would need

1. Submissions and permission to use those submissions...we need to have 12 to make a 12 month calendar
2. An idea of the size of calendar preferred by people
3. An idea of the number of calendars that will be purchased. I will not buy 1000 calendars for 5 orders....well unless they each wanted 200 calendars!

All calendars will have the Diabetes Advocacy logo.  Personally I am thinking of using them for gifts for family for Christmas as well as being great tokens to send to politicians. They would see what we go through every month...and I do know that a lot of them will use the calendars you send them! If you ae interested in this idea either to order (no money is necessary, just a written commitment to numbers and a size preference) or to submit a picture of some sort that may be used (please note that depending on the number of submissions received, we may not be able to use everything we receive) please contact us.  Also consider asking your support groups or friends with diabetes if they would be interested in being involved or ordering a calendar. I would like to have things ordered by the end of September so that we have them for November and Diabetes Awareness Month.

August 22, 2008 I am so excited!!! I just heard from the t-shirt maker and my shirts are now IN THE MAIL!!!! He loved them so much that he made himself one. How cool is that??? I just can't wait to see them. I hope everyone else loves them as well. It would be great to see "Diabetes Advocacy" on people's chests all over the world. It woudl be great to get the word out and to really start to be noticed. If you are interested in a shirt, please remember that we only ordered a very limited supply to start. IF there is interest then we will order more according to demand. If we generate enough interest we could also look to expand from a white t-shirt with black lettering to a grey t-shirt with black lettering. As soon as I get the shirts they will be in the Store and pictures wil be up!!

August 19, 2008 I wonder if there is a copy write on Murphy's law because I realy 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 doe these things absolutely have to happen! Yep, I love diabetes. It has no impact on my life LOL!

August 18, 2008 Dear Wall; It is really important that Liam watch his cholesterol intake. People with diabetes are more likely to have heart disease and Liam has already been living with diabetes for close to 10 years. He has also had cholesterol levels higher than should be seen in a person with diabetes. He has been told to watch what he eats. I have reminded him often. I even had a really bad parenting moment when I freaked because he had 24 hours of nothing but fried fast food.  Wall, I thought I had gotten through to Liam but I seriously questioned that today when we went out for lunch. You see we had gone out shopping and both Liam and my grandmother were hungry. We decided on a restaurant and went inside to eat. Everyone ordered their food and Liam ordered a huge hamburger with fries.

You got it Wall, I was ready to explode but I didn't! I was good this time....well I was better. I asked him if that was a healthy choice. I was told that the burger would have lettuce and tomato on it.  Liam wouldn't eat the tomato. I was told that the fries were made of potatoes. Yes but they were also soaked in fat!!! Liam's final argument? Well he didn't offer me any other choices. They were on the menu for YOU to choose! Yes Wall that was my head you felt banging against you at that moment. Was I ever going to get this child to sadly not be a child and be responsible for his health? I know, as the mom I should have gone over the menu with him. I will next time. I have to be very hands on with this part. He can make good choices at home. He can make good choices when he is with my mom, leave those two spots and his common sense also leaves the building.

Or maybe not! He may not have chosen the salad with is meal or the rice but he did leave half of the HUGE side of fries behind! Maybe it was my grandmother telling him how proud she was of how well he was taking responsibility for his disease. Myabe it was the minor fit mom pitched after he ordered. I don't know for sure but maybe somethings are getting through. Sorry Wall but maybe I am not just talking to you after all!

August 17, 2008 Last night we were bolusing for Liam's night time snack. As I have said, my grandmohter 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 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 whoudl practice what I preach. My son could be having all sorts of problems and I am missing them...okay I am not wating 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 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 dilemas 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 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 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 hoing 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 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 8, 2008 They have been through two site changes, a high, all sorts of new food and activites 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 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 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!!!! At this point I lost it. My poor son. I said obviously no one seems to care about your cholesterol level. You are going to need medication when we see the doctor again and you will only be 11! Do you want to live to see 12? You are not doing a good job! You must take responsibility for your body because it appears that others will not do it for you. YOU have to make healthy choices! Liam proceeded to ask if the chicken was more healthy...not when its fried like that. I suggested that he just sit down with a tub of butter and clog his arteries to his heart's content.

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! 

July 2008

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 taht is diabetes related. No diabetes is not remotely part of our lives...

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 cerealàmultiply that amount by the total of carbs listed on the side of the boxàtake 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 pumpàpress button to right to get to main screenàsame button to hit MENUàscroll down using down button (has a light bulb on it) until you hit CORRECTION BOLUSà scroll the highlighted numbers to the reading numberàpress button to the right to OKAY the reading and OKAY the target until you see a screen that says bolus X amountàagain, 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 strawberies=weight times .08

Grapes=weight times .14

Bananas=weight times .2

If I have forgotten something check the site or call me J

Love Barb

July 26, 2008 I received a phone call the other day from a great friend. She does wonderful things including provide a scholarship for young adults in our province who are entering post-secondary institutions.  I sit on the advisory board for the scholarship program and have been proud to see the interest expand each year.  The reason she called me was that she was now in a dilemma.  There is only funding for one more year of the program.  Did I know of anyone that she could contact for help?

She said I know everyone and some days it appears that I do but who could help me with this? My mind is still thinking. The people that I know are either in the industry or in need themselves.  I don’t  know the heads of local corporations that would be willing to provide an annual scholarship to our kids. I have a few thoughts of those who could be approached but no personal contacts.

My head is swimming and my heart is hurting once again. This is such a great cause. Reading the applications can reduce you to tears as you read how diabetes has played a role in these young lives.  We get to read about their hopes and dreams and then get to help them on the road to realizing them.  Its an amazing thing to be a part of and I just pray we will find a way to keep this going. If you know of someone who would be interested in funding a scholarship to this organization, please let us know. The group administering the scholarships is a charitable foundation that does incredible things. Please, if you  can help me continue to help these young people you will be making a huge difference in the lives of some incredible young people.

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 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 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 councellors. 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 moning I was sooooo glad I spent over 10 hours in my car yesterday to get him....he has been sooo sick! Vomitting 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'tknow 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 22, 2008 Wow!! I am so excited! Diabetes Advocacy has created a new page tha 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 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 reagarding 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 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 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 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 13, 2008 Do you ever get to that point when you feel that you just aren't doing enough? I am bad. I like instant gratification. No that's not true. I like to work towards something. I love the stimulation of working towards change. I do it every day but not enough. What more can we do? I need some help on this one. What more can we do? How can we get it done? I feel like I have been spinning my wheels for a bit now and getting nowhere fast.

I see the number of you that still visit and hopefully gain something from the site. I receive praise from people in the industry stating that what we provide at Diabetes Advocacy is second to none. That feels great but things are still a struggle. I have so many things I would love to accomplish and yet I still struggle to maintain this site let alone have the resources to follow some dreams. For those who don't realize, this site is maintained and run by an organization of one. My salary for doing this is non-existent. Upgrades, time and more are all covered by one person. As you can see, we have been lucky to receive support from two major sponsors but two groups do not make an income. They cover the basic site costs for a year. After doing this for at least the past 5 years, I occasioanlly wonder if I am making any difference but people quickly set me straight and I move forward.

Its time to move forward again..what are your issues? What more would you like to see on the pages of the Diabetes Advocacy website? What would you like to see us working on? What are your top priorities and how can we help? Where do we need to expand? How do we reach more people and educate them? What should we be aiming for for November? We have done tattoos (which are still very popular). We have shared stories. What is next? Please consider sending me your ideas, what you like, what you need and let's see what else we can do! (email to barbra[at]diabetesadvocacy.com)

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 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 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 hmself. 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 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 inservice 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 afer 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 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 3, 2008 I have once again asked to be a part of a CDA effort to work on the issue of Children with Diabetes in Schools. We had our first meeting today and I am very impressed. We are finally moving towards having a new document and resource for children with diabetes in schools. There is also a desire to see legislative changes in all provinces occur sooner rather than later as well. It is wonderful to see and be a part of! I have been lucky to work with two other incredible people to get us to this point and am looking forward to working with even more people who are dedicated to seeing children with diabetes in school protected, to see educators understand their role in assisting these children and seeing real change for our students. Thank you to the National Advocacy Council of the Canadian Diabetes Association for keeping me involved and  for allowing us to see things move to this point!

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.

June 2008

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 transCanada 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!

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 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 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 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 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 15, 2008  I was putting Liam’s Cozmonitor on and I unscrewed the battery cap. As I looked inside I saw the Energizer battery.  My mind began to wander. Without that battery my son is just like the bunny…he dies. The battery runs his pump. No battery, no pump. The pump delivers the insulin. No pump, no insulin. The insulin keeps Liam alive. No insulin, no Liam. Disturbing yes but it really wasn’t thought of in a morbid way. It was just a fact….I have issues.
 

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). He is at Dad's tonight. Yep I am terrified because I saw what Dad's plans for the night are but I have changed his night time basals and Dad usually under doses his carbs.

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 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 12, 2008 The final installment 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 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 traums. We'll save that one for another day.

The absolute best part of the appointment with the exception of my son's A1c remainng 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 toknow 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 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 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 7, 2008 I had an interesting conversation with a dear 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 choses.

June 5, 2008 Why do things go wrong when you aren't there and why are you so sure that you are the only one who can fix it properly? Because I am a mom and because I am a control freak and again, because I am a mom and its my baby who was in trouble.

Liam's site fell out yesterday at his dad's house. Dad rarely does site changes unless I am on a long trip without the boys. He hasn't done one probably since about October. Liam walked him through it and I walked Liam through part of it. Later that night I had a message on my answering service "Mom I didn't get all the homework done that you wanted. I am feeling sick and am going to bed." You know that I went to bed with my phone last night. I was scared to death that the site wouldn't work, no one would notice, Liam would be ketonic by the time the morning came around. He would be home from school for the day. He would be gaunt looking. I would be fighting ketones all day.

I did get a call....at 10:30. I saw the school's name on the phone. First thought? He is high still!!! Wrong. Dad put the carb count for Liam's lunch in the wrong lunch bag and we didn't know it until this evening. The teacher was calling for a guestimate from me. Breathing slowly. I asked how things faired. I guess he did come down with a bit of a bang but all survived. There was no need for hospitalization, or Mom's unique care. They handled things. Whew!

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 circustance. 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 3, 2008 Low, high, low, lower. Oh the joys of diabetes in the summer. Liam has been everywhere. I am not making a ot 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. Tongiht 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!

May 2008

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 neighbors 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 devestating. 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 dilema 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!!!!!

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 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 jewelry. 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 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 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 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 15, 2008 Over the past few weeks I have had a chance to see how Diabetes Advocacy has changed and how truly unique we have become. I started this site as a place for parents to learn about the school policy regarding diabetes in their area. I then became involved in my own battle to get the Disability Tax Credit for my son and another section was added. I was given money to put my son on an insulin pump and yet again new pages were born. I wanted to make a statement about how diabetes "looks" and the Faces of Diabetes page came into being. I met a man who had lived with diabetes in his home for over 27 years but knew very little about the disease and the Diabetes Care section came into being. 

Perhaps the most interesting page of all has been the Tattoo page. I had no clue what impact that page would have on myself and so many other people. As you can read, November was coming and again I wanted to do something for diabetes awareness month. An older reader mentioned that she had got a tattoo on the 30th anniversary of her 30th birthday or something equally incredible and I decided to join her. Soon there was a group of us planning to have a tattoo done for the month of November and we would try to get some publicity surrounding the event. 

Some people were offended by what I did but many more people were inspired. The tattoo page continues to received the most traffic of any of our pages. People have been inspired by what they have seen and gone out and had their own tattoos done. More and more people are contacting me and telling me that first they never expected to see tattoos on a diabetes website and second that they love the idea and have gone out and had their own work done! I am proud that we have become an inspiration to many and look forward to continuing to share more and more tattoos with those who enjoy them on a regular basis. 

May 13, 2008 Diabetes sucks. We all know that one but I was speaking with a friend this evening and really saw the difference between being a parent living with diabetes and being the person living with diabetes. As scared as I get, we also know that the person who has the disease really has it worse. She was explaining a problem with her resevoir that left her high over the weekend. A similar situation had happened to Liam last summer. Like her, no one noticed until I changed the insulin. In Liam's case I was there to troubleshoot with a clear head. I was there to inject for him. I was there to feed him and help him. If he was an adult he wouldn't have had that same help. She had a caring spouse but I know what I am like when "sick". I don't do well with help and will dismiss many of my own symptoms. As a parent I can override my child. When he is an adult I won't be able to do that. There is also the independence issue of adults. Who wants to rely on even a spouse or loved one when you can thinkfor yourself and worse...who wants to admit that they are cognitively imparied because of their disease.

Diabetes is so scary on so many levels. More and more each day.

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.