Well, we are back. We haven’t gone anywhere but we took a much needed break from blogging and general updates for everything diabetes related except for updating to Twitter/FaceBook and attending the odd DSMA chat.
Despite taking a 4 month long hiatus from blogging, we have been really busy in our household.
School started in September and it was a rough starting with the pump because dear ol’ me tightened the battery casing too tight on the first day of school and gave Marcus a connection error and wouldn’t operate. Oops.
A few pump sites have been ripped out because of door handles. OUCH! Of course, they happen at school with the exception of one at home during Thanksgiving dinner.
Also, in September Marcus has his first A1c test since pumping and went down from 8.8 to 8.0 Wahoo! However, since we have been having issues trying to diagnose the issues with him being high lately (we think growth spurt) his A1c last Friday (the 13th) was back up to 8.8. Crap!
While we were in clinic on Friday (the LONGEST clinic time we have ever had since DX) our CDE tried out the SureT infusion set on Marcus and so far after 2 set, it hasn’t worked. He had one number in range since the new set went on and the rest were between 18-25 (324-450).
Pawel, Marcus’ dad, put a new sent on him Saturday afternoon hoping that it would work but after 2 hours of the new set Marcus shot up to 32 (576) Fuck!
When he came home to me Sunday afternoon I gave him a manual injection of 3 units of Nova Rapid to help bring him down. It slowly worked and when Marcus wanted lunch I got him to calculate what it would be using the Bolus Wizard and gave him a manual injection. He went down to 4.5 (81) which was fantastic.
At dinner he was still in range and I wasn’t sure if it was because of the site or the manual injection so I decided to wait until bedtime but he decided he wanted to go out and play in the snow as Ty was snow blowing the driveway. At bedtime, he was in range again. Fantastic but again, I want’ sure if it was the pump or injections.
I decided to leave it until morning and he woke with 16 (288) on Monday so I gave him a site change and e-mailed the hospital.
The hospital and I have been emailing back and forth all week and we have made so many changes to Marcus’ pump that it took two days for me to fully implement the changes. He has still been waking up high despite going to bed with a decent almost in range number before snack. We are also STILL having an issue with him being super high for his morning snack at 9am. Sadly though we will have to just play it by ear until Christmas break is over and wait until we get back into our routine again to see what really needs to change. It is difficult to figure out a proper management plan when the last week of school is all messed up with Christmas concerts and junk food.
We Marcus started pumping on June 26 (with saline and also his last day of Grade 2) and on July 3 (with Nova Rapid). I was more nervous than I thought I would be when we went live with insulin. I knew then that the pump would help us a lot but I had no idea how quickly Pumppy (what Marcus calls his pump) would be loved by myself or Marcus.
Looking back to a few months ago we didn’t even know which pump we were going to go with. We finally decided that we were going with Medtronic over the Omnipod for two main reasons. One, if Marcus lost the PDM for the Omnipod while at school we would be up the creek without a paddle and two, Omnipod doesn’t have CGM – YET.
Marcus had said at one point that if he can’t have the Omnipod that he doesn’t want a pump. Tough luck! As much as his dad I try to include him in every important decision to do with his diabetes, we had give him no choice in the matter. This time.
The reason why we went with Medtronic is purely for the CGM. I really like the tubeless option that Omnipod offers, which is especially beneficial for a kid who moves as much as Marcus does but the tube doesn’t seem to bother him since he is on the 18’ tubing.
Marcus had some really bad highs in the past few months before he started pumping and at his last endo appointment his A1c went up .2% to 8.8 which is much better than I anticipated. We wanted the CGM for Marcus so we can better understand what is going on between his BG checks and hopefully pretty soon we can have better control. We are starting the CGM sometime after vacation and have yet to set a training date for it.
Not even a week after the hospital let us have control of our kid again, we forgot to bolus for lunch. Luckily, we caught it at the 2 pm BG check and we corrected it but I had a minor freak out in my head about what happens if he forgets to bolus while at school for lunch? Oh, boy I need to have a whole sheet for his agenda each week with the carb amount he is having for lunch and for each snack so he knows what he needs to bolus for.
When we started to pump, Marcus was skeptical about the pump because he didn’t want his lifestyle to change again like it did after DX but really; it has changed for the better. We have everything (when we can) weighed out and the carb ratios that we have on a sheet that we keep in the kitchen for the most eaten things. It is fantastic!
It is so fantastic that we have started doing the carb ratios and weighing CJ’s food too (CJ is Ty’s son who was DXed May 19th). CJ is still on injections but it doesn’t hurt to get a head start. Having the ratios really helps us with better blood sugar control for both boys and I wonder why they didn’t teach us when Marcus was first diagnosed. They taught us to count the carbs on the boxes of prepared foods and to get as close as we could to the recommended carbs on the Canada Food Guide that was set out just after DX by the dietician. Not much more than that.
Don’t get me wrong, counting carbs using ratios can be a pain in the behind especially when eating out and using the restaurants nutrition information and we figure out the factor based on their numbers and work out the “exact” carbs for dinner only to have both boys high in their 20’s (360-ish) later that night before bed. Boy, oh, boy does that ever mess me up with that momentary shock of “Why the heck are you so high?” Especially since he is on the pump but we haven’t figured out the dual wave bolus for things like pizza yet. I think I will have some reading while he’s at camp.
There have been a few sites that have been set improperly and it sucks because pump supplies are SOOOOOOOOOO freaking expensive. Even with insurance. I need to set up auto refill because I don’t like running low.
Just before leaving for camp/vacation we had only four infusion sets left for 10 days. Normally that is okay but for 10 days at camp and in the car traveling, I am not sure how many we would actually need just incase something happens. As it turns out Marcus needed a site change today because his site is falling off. We have yet to use liquid band-aid or other added adhesives to keep his sites on because they usually start falling off around day 6 and that is okay with us as we won’t go past day 7.
The one thing we need, need, need to remember is that when we check his blood sugar after a site change two hours later and if it is okay, we need to remove the old site. We have a bad habit of forgetting it for a day or two because Marcus won’t tell us that it is on. I don’t want to think about the infections that he could get by keeping a site on too long, especially if it isn’t capped off to prevent dust and stuff entering the through the cannula. Not sure if that happens often or not but I picture red swollen pimple like spot on his butt.
All in all, the switch to the pump was much better received by Marcus that I though it would be. I am so pleased that we made the switch to pumping although when switching back to preparing the insulin mix for CJ I have to stop and think about how to mix it now. Which isn’t a bad thing, right? How can taking your time to think about insulin dosages be a bad thing?
We are still here. I promise.
Things at home have been extremely busy and I am reminded daily of those people who are busier than I am who still manage to find time to blog. Good on ya!
I am typing this just after dropping Marcus off at camp for 5 days.
There are a few blog posts that I have bee trying to get out for over a month and I can’t seem to find the time to get them out. They keep repeating themselves in my brain reminding me that I need to get them typed out but I still can‘t seem to get them out.
There are a few blog posts that will be coming and I swear I will get them all out – eventually.
The first will be about our first month with Marcus on the insulin pump. Check this update RIGHT after this goes up because, I managed to get the post written and put into draft before typing this.
The second will HOPEFULLY be about the first part about our trip including the camp drop off and maybe the five days that follow it while we wait for his camp to be completed.
I posted on facebook just after dropping Marcus off at camp that I had no tears yet but Mother was crying for me because she had enough that she could show how proud I am of my little man. Although, it’s been an hour driving up towards PEI (an 8 hr drive from camp) and it hasn’t let up. I am proud of my kid but I am not THAT proud that she needs to show everyone in the province for hours on end while we drive in the rain on roads that we don’t know. I want my kid to enjoy his time at camp and not be stuck inside on his first day.
I know I have been MIA for a while but we are in the middle of blending households, selling Ty’s place, the start of soccer season, JDRF Walk Committee meetings and the year end parent council meetings.
Please forgive me if this post doesn’t seem too coherent. These past few days have been difficult for me. There was another child diagnosed with T1D. My partner’s son, CJ, who lives with us most of the week was diagnosed on Sunday, May 19.
I am having a hard time remaining calm and fighting back tears. Not because T1D is anything to lose control over but because I am struggling to remain calm for my partner. He really has no idea what is ahead and I don’t want to scare him but he will soon learn for himself how difficult it can be.
All I can do is remain strong and show my partner that it really isn’t that bad but it takes a huge adjustment at first. The information overload is just insane and fortunately he has Marcus and I to help him and CJ get through the first little while. CJ’s mom on the other hand has T1D herself so she knows what it is like to live with T1D day in and day out.
As you know, the initial diagnosis is a huge shock and most parents blame themselves for their child being diagnosed. I am having some feelings of guilt despite knowing that T1D is an autoimmune disease and it cannot be prevented. I wonder if CJ wouldn’t have been diagnosed if his father hadn’t met me. Both Marcus and CJ were diagnosed while living in my house and I can’t help but feel there is some curse put on me or my house where every child that I care about develops T1D. I know, I know, that sounds irrational but I love CJ like my own child and it sucks that yet another child has to prick themselves and get stuck with daily insulin injections.
I have already been in contact with the Ottawa JDRF office and asked for a Bag of Hope to be ordered for CJ and hopefully it won’t take too long.
I learned to recognize the signs of T1D very well especially since I lived through it.
CJ wet the bed Friday night and we didn’t find out until Saturday evening after he had left. Once we discovered that I mentally started preparing myself for what I knew was coming.
I mentioned it to Ty but I didn’t want to push it. I am not CJ’s mom or parent for that matter. Not yet anyway. I wanted to call his mom immediately and tell her to take CJ to CHEO but I decided to wait and lucky it was the next day that she noticed his frequent thirst and his bed wetting at her house and took him into CHEO were the diagnosis was confirmed. CJ has Type 1 Diabetes. Luckily he wasn’t in DKA but if she would have waited a few more days, he probably would have been.
As I type this Ty, CJ and his mom are at CHEO receiving the T1D for Kids Crash Course with the information overload and I am so thankful that I have the opportunity to help them get through this time. While, I know they are having less information thrown at them because CJ’s mom is a PWD the information is just not as intense as Pawel, Marcus and I had it. I find it kind of not fair. Is that wrong for me to be jealous about this? While I may feel a little jealous over their training I am very thankful to Andrea for being my person who helped me get through Marcus’s diagnosis. Local support is great but I can’t forget to thank everyone online in the Diabetes Online Community worldwide.
With CJ’s diagnosis come changes for Marcus. CJ’s dx happened to be at a time where I am getting Marcus ready to start pumping. Marcus was happy that he was going to more freedom with foods and eat Dairy Queen with the rest of us and not have to worry about not being a “snack time”. Now, we have to worry about CJ feeling left out because it may not be “snack time” – not to mention the carb overload of ice cream. We are forced back to a strict schedule which will be VERY difficult to maintain with CJ living in two houses throughout the week.
Ty and I were talking the day before about all the near misses that we had in the past where we COULD have met sooner. It was said that the Universe took its time to bring us together because it was our time. Little did I know it was my time to have an amazing man in my life and two diabetic children.
Now, with this diagnosis I have more faith in the Universe and it proves to me that I am exactly where I need to be. Whereas with Marcus’s dx I lost all faith but Marcus had faith that he was given T1D for a reason and he intended to find out why. Maybe, his purpose is to help others with T1D.
The Universe may have a plan after all. Go figure!
Below is Marcus’s “kit” it goes everywhere with us and it is like having a baby all over again with respect to always having to bring it with us like a diaper bag.
We have since replaced the yellow cooler with a red Frio ouch but have yet to try it out.
Today’s prompt is:
- Introduce your condition(s) to other Health Activists. What are 5 things you want them to know about your condition/your activism?
- Share links to 3-5 of your old posts (or posts from other Health Activists!) that you think will help the newly diagnosed.
My condition is not mine, it’s my son’s and he has Type 1 Diabetes.
Marcus was diagnosed at age 5 on September 18, 2011 (the day of our first 5km run at the Army Run here in Ottawa – we never made it to the race). He is now 7. Since he is so young I manage his diabetes but he has a lot of input. I feel like I am the person who has diabetes but without the multiple finger sticks and insulin injections. (If you are a parent who has a child with diabetes you will understand exactly what I mean.) If I could take diabetes away from him I would, as any parent would. As a single mom, I do the day-to-day management on my own. I have to count the carbs in everything he eats and it gets to be a pain and I wish we get a break, but we don’t.
Here are 5 things that I think you should know about Diabetes.
- You do not get a day off – ever!
- Diabetes isn’t caused by eating too much sugar. It is caused when your body can’t use the insulin that it produces they way it needs to (Type 2) or your pancreas doesn’t make it anymore (Type 1).
- With proper care you can live a normal healthy life.
- There is no cure – yet! And insulin is only life support.
- The more people who know the signs and symptoms of highs or lows the better. Make sure you are educated and don’t be afraid to ask questions. You won’t know if you don’t ask.
There are many, many more and I could go on and on but I won’t.
Also, here are some posts and links that I think will help the newly diagnosed.
- The resource that I found the best after I got online and started reading about T1D was Leighann at D-Mom.com. Her resources are amazing.
- JDRF, Canadian Diabetes Association, TypeOne Nation, American Diabetes Association and Children With Diabetes are all great resources for life with Type 1 Diabetes.
- This one isn’t a link so much as a great piece of advice. Join Twitter (if you aren’t already on it) and search for #DOC and you will find a bunch of people in the Diabetes Online Community. Just remember, we are always there to help one another. We are a giant support system and without everyone, I don’t think I would have made it this far.
See you tomorrow!
April 1 marks the beginning of Health Activist Writer’s Month (#HAWMC)
Everyday for 30 days we are given a prompt on what to write about and today is Day 1 and we are just getting started.
Today’s prompts were:
- Why you write – tell us a little bit about why you write about your health online and what got you started.
- Why HAWMC? This is our third year of the Health Activist Writer’s Month Challenge – why did you get involved this year? Are you a newbie to #HAWMC or a veteran?
Why do I write? I write because I care. I care because I am a mother, a sister, daughter and a friend. I know many people that have chronic illnesses but sadly they let themselves be defined by them. Marcus won’t. He is a child who has diabetes. It is a part of him – even if we don’t like it. I believe that no one who has a (in)visable illness deserves to be treated any differently than those who don’t. You never know what it going on beneath the skin.
The number one reason I write is because I felt like I was going to explode and my therapist suggested that I keep a journal about how I was feeling and all of the good/positive things about Type 1 Diabetes. This was only 3-4 months after my 5 year old son was diagnosed with Type 1 Diabetes and I didn’t think anything positive could ever come from my sons diagnosis. Boy, I was so wrong.
As a result of my son’s diagnosis, he has gone to Disney with Dreams Take Flight (read about it here, here and here) and he is a JDRF Youth Ambassador. I sit on the Family Development Committee here at the Ottawa JDRF office, I also created and moderate theCanDoc (an online community for Canadians with Diabetes – we host a weekly chat about life with Diabetes every Monday at 8 pm EST). Not to mention all of the wonderful people I have met because of this “disease”. My world and point of view has completely changed for the better.
I also write to give diabetes a voice. My son’s voice. Although he is only 7, he wants everyone to think about the different types of diabetes (Type 1, Type 2, Gestational and LADA) and not the stereotypical immediate questions that come to mind when you hear that someone has diabetes. “Oh, do you have it because you had too much sugar?” I will admit it, when the doctor told me he had diabetes I was floored. I didn’t know the difference then and one of my initial thoughts were “How? He isn’t allowed sugar.” That is the kind of narrow-mindedness that we want to prevent.
Writing about diabetes has helped me “come to grips” with my sons diagnosis becasue online there is always someone on Twitter who has gone through exactly (or similar) to what you are going through and it helps to have a someone on the other end of the line. The Diabetes Online Community (DOC) is such a large worldwide support network and I am extremely grateful to have found them.
While everyone has their own unique experience with T1D, I take solace in knowing that everyone is not perfect. Everyone has good days and bad with diabetes and it is difficult to maintain blood sugars in a child who is always active and grows like a weed. It is easy to feel the pressure of the constant finger pricks, the carb counting, insulin dosages and exercise. We all go through it together and while we may not be related by blood, blood is what brings us all together and we are a family.
This is my first year participating in the #HAWMC and I am looking forward to the other 29 days.
It has been a while since I posted and imagine my shock when I looked at my last post. It was in February. A whole month and a half has passed since then.
There have been a bunch of things that have been going on at home and with that there are ups and downs in blood sugars, endo appointment and a trip to Friends for Life in Toronto March 8-10.
With the trip to FFL in Toronto I have been meaning to write a post about it and all of the fantastic people that we met and all of the helpful things that we learned. Not to mention the few tips and tricks that have helped Marcus and I better manage his D.
With some things sorted out at home, I am hoping to get things back on track but until then there won’t be any posts Hopefully, it won’t take too long.
On February 12,
I love when companies donate their millions of dollars to a worthwhile cause without additional expense to its customers. That is one of the reasons why I stay with Telus. I stay with Telus because they help support JDRF and the walk each year.
Mental health issues have increasingly become more important to me since I am dealing with depression myself since Marcus was diagnosed with T1D. Read More