At least we’ve average….

In between my last diabetes post and this one,  things have gone down-hill, then more down-hill, then an even keel and perhaps finally we are on an upward swing with Sarah’s diabetes.  Can I just take a moment to say how rotten and horrible and down-right annoying diabetes is?   It is!  It’s a royal pain in the you-know-what and we will never get used to it and I don’t think we ever should get used to it.   And now I shall do my best to sum up the situation.

Back in November Sarah and I went to the hospital for a clinic/pump training day, and there we found her A1C’s had gone up a whole percentage.   This wasn’t great news – when they test your A1C ‘s they are checking the percentage of hemoglobin that is covered in sugar – and this gives them an over-all picture of how well you have managed your diabetes in the past three months.   And this test showed that Sarah’s percentage had gone up significantly and now was higher than they would like it to be.   It was upsetting because it’s means that I’m not doing a great job managing her diabetes – and it also means we were a statistic.  It’s a researched fact that when diabetics start using an insulin pump their blood sugar control starts out great, and their A1C’s tend to come down (that’s good) but by the end of a year – and that’s where we were at – people’s control over their diabetes tends to wane a bit and they typically end up back to where they were before the pump with higher A1C’s again (not good).   I think this is generally contributed to complacency, people just ride the wave of initial good control and stop paying attending.   So I went home kinda down and frustrated, but on the other hand determined to do better.

But things weren’t getting better and I was finding that I was getting frustrated with Sarah because she didn’t seem to care at all and certainly wasn’t doing things that were helping the situation.  And how do you try to tell a 8-year-old that there will be long-term consequences for their actions?   In my frustration I called a friend, and I’m so grateful that God has provided me with her.  Her daughter has had diabetes for over 10 years and so she is no stranger to all the ups and downs on dealing with this frustrating disease.  And guess what the first thing she told me I had  to stop doing was?   Well get this, she told me to stop feeling sorry for Sarah.

I had to stop feeling sorry for Sarah????

But of course I felt sorry for Sarah!   Jason and I feel very sorry that our healthy daughter was stricken with a disease for no known reason, and we feel sorry that she has to live with it and endure and the poking and prodding and it really upsets me just to think about what could happen to her if we aren’t diligent all of the time.   However, I could see what my friend meant.   Unknowing I was communicating my sympathy to Sarah and it wasn’t helping her, in fact it was hindering her.  Because I was feeling sorry for her, she was feeling sorry for herself, she only saw her diabetes as something bad and something that wasn’t fair.   And because of this I don’t think either of us were properly viewing it as something to be managed well – it was just a burden.   And I think that I was trying to shield Sarah from it – which meant that she felt she had no responsibility and no consequences.

It shook me to realize  that I wasn’t viewing it correctly –  and that it stemmed from me not realizing that God could have a purpose in this.  Jason and I had a clear understanding that God had a purpose for Ava’s life, and we completely accepted how that turned out.  But for some reason I could never see how diabetes could bring God glory.   But my friend went on to say that God did give diabetes to Sarah – it is His refining fire in her life,  He is going to use it for His glory and I shouldn’t feel sorry that God has allowed this to happen, just the opposite!  Of course God brings difficult things into our lives, but whining and complaining and feeling sorry for ourselves doesn’t accomplish God’s purpose, how could it?  But if we can see Sarah’s diabetes as something from His hand, to develop perseverance and faithfulness and to please Him by remaining under it, that’s the only place that we can find true joy in something so miserable as type 1 diabetes.

So after asking forgiveness I changed my perceptive and instead of having a good cry with Sarah about her diabetes,  we had a talk about how God allowed this for her and it was going to make her stronger and it was exciting to think of how God was going to use this in her life.  And it helped!   Her attitude towards it has changed (for the most part) and now she cares what her blood glucose levels are, and that’s great.   We still have our cries, it’s not easy living with this disease, but I’m happy to say through our tears I can remind her that God has a purpose,  and that has been wonderful.

And I wish I could say that at our next clinic visit at the end of January her A1C’s went down and all was well – but that wasn’t the case.  They stayed the same in spite of our hard work and it was incredible frustrating!  Grrr…stupid diabetes!  But the kind doctor told me that even though they would like her A1C’s to be lower,  we are right at the pediatric national average.   So we aren’t doing a great job or a bad job, we are just completely average 🙂    But things are starting to look up!   Last Sunday I shared with my small group our frustration with Sarah’s diabetes and I know they have been praying for us because these past four days we seem to be in a better groove and her daily numbers are coming down (that’s good) and I’m so grateful that we have a loving heavenly Father who although allows all these trials and difficulties in our lives, He never ever leaves us or forsakes us.  Not ever.

Amen.

 Be strong and courageous…. for it is the Lord your God who goes with you. He will not leave you or forsake you.”  Deut 31:6

P.S.   I just gotta tack this on to this post… with the rise of Type 2 diabetes, it’s not unnatural for people to get confused between the two diseases, but they are completely different and I’m learning to be gracious when people try to give us good advice, or ask if Sarah can eat something (she can eat everything!!)  Here’s a really cute type 1 diabetes rant…

 

Mama Pancreas

November is Diabetes awareness month!   I should have posted this last Friday on World Diabetes Day, but I’m not that organized.    Now perhaps I should have named this post ‘Mamma and Papa Pancreas’;  but as I’m with Sarah all day, every day now–I really do feel like I can safely call myself Mama Pancreas without stepping on Jason’s toes.

Sometimes, actually lots of times, quite often really,  I tend to forget just how much Type 1 Diabetes has changed our lives,  and more importantly how it has changed Sarah’s life.  And this is the part that makes me what to stop and have a little cry for my daughter who needs insulin pumped into her around the clock, who wears an electronic device 24/7, and who can’t remember what it’s like to go a whole day without pricking her finger at least 5 or 6 times.   I know she would love to just go back to those days where she could just eat something, anything, without having to stop and think about how many carbs it is and then tell her pump that number so that she gets enough insulin to cover that food.   To not have to endure a site change every three days, where we freeze a little patch of skin on her tummy, and then insert another infusion site into her, and then have to put up with the rashes from the medical tape and spots on her tummy from previous sites that hopefully one day will fade.

Whew…. diabetes is not fun.  But we do have lots to be thankful for still, yes even in this.   First of; it’s a great day-in-age to have diabetes because they seem to be getting closer and closer to a cure – or at least effective work-arounds all the time.   So that is exciting.   And to be able to wear a pump and have the control that we have over Sarah’s blood sugar is wonderful too – even if it does mean I get the privilege of checking her blood sugar before I go to bed and sometimes even in the middle of the night.

And I’m so thankful that Sarah is who she is–a strong brave girl who doesn’t let diabetes get her down.   She swam all summer long, and was in and out of the lake and pool like a fish.  She plays hard outside and inside and it hasn’t stopped her from doing anything she wants to do.    Once in a while she breaks down a little and we have a little cry together over it, but then she’s off again.   And her insulin pump that she started wearing last year at the end of January has been wonderful and her A1C’s (a test they use to look at blood sugar levels over the past three months)  have been really good, so that is encouraging.  I try so hard not to get frustrated with myself and with her when she eats something and we forget to bolus and her sugar gets out of whack.   But really,  there doesn’t seem to be much of a point to strive for perfection with blood sugar control because even things like her getting really upset can affect her  levels.   It is what it is.   It’s a treatable manageable disease that God has allowed into our lives for His purpose and His glory and we accept it — sometimes rail heavily against it but I know that God understands that we still feel pain even when accepting His will.

Maybe things like this are put into our lives to make us look forward to heaven more… no diabetes in heaven, hurrah!   I’m just thankful that we have Sarah and that she is healthy and that we get to enjoy everyday with our precious daughter who is growing up so fast!!!

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And I love the way she doesn’t care that her pump is out there for the world to see,  in fact I think it’s great.

Here’s this verse AGAIN that we can cling too;  I can’t get enough of it…

 For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us.  Romans 8:18

Heaven is going to make all this so worth it!

Amen.

Pumping and Riding

So here we are after a whole week of pumping and I can say without hesitation that Sarah loves her pump!      She seems to have adjusted well to having to wear her insulin pump 24/7 and I can say that we are all enjoying the freedom that it gives her eating wise.   When Sarah was getting her needles every day she had a set amount of carbohydrates that she could eat for each meal and snack, but now with the pump there is none of that.  She can eat what she wants, when she wants.  Oh the freedom!

We were a little worried that once she started pumping, she was going to want to binge and not stop eating, but it hasn’t been that way at all.  She’s actually been eating roughly the same amount of carbs as before, she just eats them at different times.    When she first got started last week and was still getting used to it, at one point she asked me hesitantly at snack-time, “Mom, can I have a yogurt AND a cookie?”  And I could answer for the first time in over a year, “YES!  Yes, you may have a yogurt AND a cookie for  a snack.”   It felt so good.

Here is  a look at her pump and her insertion site where it plugs into her.   The only draw-back is that the site has to be changed every 3 days, but Sarah is a trooper and thanks to new friends of ours, we found an insertion set that is very easy to use and install.

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And the pump came just two days after her 7th birthday,  I wish it had come a little bit sooner, but we saved her birthday cake for a few days after her birthday to enjoy with grandma and grandpa.   Sarah was with me at Costco and picked it out.  It was rather large, but she so badly wanted a nice juicy cake that I capitulated and bought it for her.    And just look at her face….

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And her piece was a whole whooping 100 carbohydrates!    But the pump could handle it.   We just told the pump what she was eating and it gave her the right amount of insulin… wonderful.  (That’s her “checker” right beside her by-the-way.   Her meter and “poker” that we use to check her blood sugar levels,  we never go anywhere without it.)

She did have nice 7th birthday, with an impromptu birthday party with her neighborhood pals where we made these little birdies…

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Perhaps I’m a little obsessed with birds, but these birdies are really sweet and  I like to think of it as bringing a part of Ava into things.   I found the pattern here if anyone is interested.

And then, as part of her present from us and grandma, we gave Sarah got horse-back riding lessons!   She loves horses like many little girls, and after visiting a friends farm with horses a few years ago I knew that she had no fear of them.   So through a friend we hooked her up with some lessons.  And even though it was cold last night and the barn wasn’t heated, she enjoyed riding “Swiper” and can’t wait to do it again next week.

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It’s been a busy couple of weeks here with the transition to pumping, but all in all it’s going well.   It’s been a bit stressful, just because it’s new, but when we see how happy it’s made Sarah we know we made the right choice.

Happy pumping Sarah!

Something to look forward too…

I’m so excited to be able to announce that in 9 days Sarah will ditch her needles and start using an insulin pump… yipee!   We have known this was coming for a while, but last week we actually received her new pump and tomorrow we go to clinic so that Sarah can be hooked up to it and wear it for 24 hours just for practice.   Then we go back January 28th to really start with insulin.   We are so excited and so relieved.

The pump is going to be such a game changer for her.  Yes it means that she has to wear a device 24/7…  but she will finally be able to eat like a normal human being again!  She can snack an hour after breakfast if she wants… she can eat a late lunch or skip lunch all together.. and she can have dessert and eat birthday cake, woohoo!!!!     Right now when she’s getting needles we have to match carbs to the amount of insulin she gets, so we have had to be really regimented with snack-times and the amount of carbs she eats for meals and snacks.    It’s been hard on her and it will be nice to give her back the freedom that she craves.

Here is Sarah waiting at her last clinic visit… insulin pump here we come!!

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512 Nights…

Last Saturday I got this text from my friend Tanya, Aleeda’s mom….  “512 nights at Ronald MacDonald and now we are all home!”    It just blew me away that it had been that long that they had lived in Toronto,  and seeing those numbers was a bit shocking.   Our family was only away for 6 months and that felt like forever, so times that by 3 and then you can see how Tanya would say that coming home really isn’t coming back to “normal”… it’s kinda like coming back to a completely new life again.    And even though Tanya and Brian’s journey has been far from easy… far far far from easy… I love seeing how their faith in God has given them incredible strength to face all the challenges and hurdles of having a  baby with hypo-plastic left heart who needed a heart transplant, and how through it all they have stayed sane and stayed positive.

Now the journey is still far from over.  Aleeda is still being fed through her g-tube and is on quite a few meds, so she and her baby sister are going to keep Tanya very busy, but I know that God chose wisely when He gave Aleeda to Tanya and Brian and I hope that someday Tanya finds a way to share her story for everyone.

The girls and  I actually went and saw them today – we are so fortunate that home for them is only 40 minutes from here… hurrah!  Sarah had said that she just wanted to see Aleeda smile and she got her wish…

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Doesn’t Aleeda look amazing?    Sarah also spent alot of time holding the baby like she had been doing it all her life…

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But to be honest, seeing pictures of Sarah holding babies kinda makes Jay and I sad.  There are so many pictures of Sarah holding Ava and we just wish that it was still Ava that she was holding… sigh.

While we are on the topic of Sarah… Jason and I attended a class last week to learn more about using an Insulin pump as a method to control diabetes.  We learned more about how the pump works and they also talked about how we can begin to start the process to get Sarah pumping if that is something we want to do.   Here is a handy dandy illustration of what a pump looks like…

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Basically the pump is a little digital device that you wear on your belt, which pumps insulin through tubing that is attached to you.   Having a pump would be great for Sarah because it would allow her to eat what she wants when she wants, just like the rest of us.   But the downside of that is that you are kinda married to the pump in the way that it’s always there… it never leaves your side, literally. 🙂

Right now we manage Sarah by giving her injections of insulin, which is restricting because she has to eat at scheduled times and has to stick to a strict set amount of carbohydrates for each meal – but in between snacks and meals we don’t really have to think about her diabetes.    So I guess it’s one of those things where you have to weigh the pros and cons and figure out what works the best for you and your family.   I’m fairly certain that just because of the flexibility we will be perusing the pump, but that means now we have to figure out which pump to get!   So if anyone has any suggestion for us, we’ll take them!

Other than that, it’s just business as usual around here.  I am pleased to report that with some help from my friend Rachel,  I finally manged to tackle the room in our basement that held a lot of our belonging we had brought home from Toronto.   I thought I couldn’t sort it all because some of the stuff was Ava’s and I was pretty sure it would make me sad.  As it turns out it didn’t make me sad, and I realize now it wasn’t Ava’s stuff that was bothering me, it was just the mess and chaos that was bothering me!   I do feel like I am close to whipping this house back into shape and getting things all organized so that it can be functional for us.  But it’s taken a long time because life is busy here with 4 children plus diabetes.

Today is actually 3 months since Ava died.  Three months already.  And then in a few weeks it would have been Ava’s first birthday…. December 4…. Ava Day. 🙂   We haven’t quite figured out how we want to celebrate it, other than the kids want to decorate our house with birds and probably eat cake.  But I hope that as part of ‘Ava Day’ we can find a way to reach out to other families who are struggling with a baby in the hospital.   We will see what happens and I will keep you posted.

And we just wanted to thank people once again for your continued prayers and support.  Even after three months we still miss Ava like crazy, but are truly thankful to be home and I think Tanya would say the same thing, especially after 512 nights away.

10 things I’ve learned about diabetes

It makes me kinda laugh to think that if we didn’t have Ava – whose troubles have really taken over this blog – I probably would be blogging every day about Sarah and her diabetes!    And I’ve been working on this post for a while, because I really want to share with everyone some info about Type 1 diabetes.

We are definitely still in the learning phase here on how to live and care for Sarah,  and I will say  again that Diabetes is a HUGE learning curve.    And I can’t say enough how grateful I am to Jason for taking on the burden of care for Sarah after her diagnosis.    Sarah was diagnosed December 20th and I moved into the hospital with Ava January 2nd, and so he had to  take it on and fly solo, and he has and still is doing an amazing job.

And even though diabetes is manageable and diabetics can lead a normal life,  Jason and I will both tell you that even now,  Sarah’s diabetes diagnosis really hurts.    It’s really hard as a parent to have a perfectly healthy normal child and then be told that she will be dealing with something for the rest of her life… it won’t ever go away.   And it has changed our life.  Now Sarah has to check her blood glucose level 4 times a day.  Get a needle before breakfast and another before dinner and snacks have to be regulated by time and the amount of carbs.  It’s a bit time-consuming and it does make us long for our pre-diabetes days, but on the other hand, we can be grateful that diabetes is something that can be controlled and that Sarah isn’t sick.

And the hospitals do make sure that you as the parent receive a ton of training.  It’s just that Jason has done most of the training and I haven’t, and I need to go and do it.  When I have the time of course.

But I’ve learned some basic things so far, and I’m going to share those things with you (whether you want to or not :))    So here goes…

1.   First off…  type 1 diabetes and type 2 diabetes are two completely different diseases and as one of our diabetes nurses said,  really should have two different names.

2.   As you probably already know, Type 2 diabetes more often happens later in life and is a disease where your pancreas either doesn’t produce enough insulin, or your body is not effectively using the insulin it has.   It is often managed with diet and exercise,  or pills to slap your pancreas into producing more insulin.    If these measures don’t bring down your blood glucose levels, you may have to take insulin.

3. Type 1 diabetes (which is what Sarah has) results from your body attacking and destroying your beta cells which are formed in the pancreas and produce insulin.  So it’s really an autoimmune disease as your body has for some reason decided that its own beta cells are the enemy and must be destroyed.   And unfortunately it’s  still a mystery as to why this happens.

4.  Sarah didn’t do anything that caused her to get diabetes.   It wasn’t her diet or anything like that.  She may have had some genetic component that made her more susceptible, but then they really think there is some-sort of unknown environmental factor that triggers type 1.    One of the endocrinologist at Sick Kids said that they often see it appear in children after period’s of stress, and Sarah was stressed back in November that we were going to be leaving to go to Toronto to have Ava, but did that cause it?   Probably not.

5.  Because type 1 diabetics are completely insulin dependant, they don’t manage their disease with their diet.  They can still eat everything, and should eat a large variety of foods just like everyone else.

6.  Type 1 Diabetics count carbohydrates in their food – not sugars.   Here is Wikipedia’s definition of a carb.. “the term carbohydrate often means any food that is particularly rich in the complex carbohydrate starch (such as cerealsbread, and pasta) or simple carbohydrates, such as sugar (found in candyjams, and desserts).”   Carbohydrates are broken down in your body into glucose – which is a readily available source of energy for your body’s cells.   But to get at the glucose, your body needs insulin, a hormone produced by your body.   So when a diabetic looks at packaged food, they don’t look at the sugar content, they look at the carbohydrate content, as it’s the carbs that will turn into glucose in their blood stream and affect their blood sugar levels.    (Don’t want to get too technical, but we can actually subtract fiber grams from the total carbs.  So for instance, 1/2 cup of blackberries has 7 carbs, but 4 grams of fiber.  So we subtract the fiber from the carbs, now that 1/2 cup blackberries only counts as 3 grams of carbs…  whereas one small arrowroot cookie is about 5 carbs.   That’s why it does pay to eat healthier carbs more often as you get more bang for your buck.)

7.  Insulin – as it was described to us – is the train that allows the glucose in your blood-stream to be used by your body.   Without insulin, your body is deprived of its easiest form of energy.  So diabetics must inject insulin into their body so that their body can use the glucose, which is vital for survival.

8.  If you are taking insulin injections like Sarah (as opposed to being on an insulin pump) and you are just learning like us – you must eat the same number of carbohydrates at each meal, including snacks, so you know how much insulin to give.   Jason has met with the dietician and she has given us a list of how many carbs Sarah can eat at each meal and snacks.   So Sarah can have 35 carbs at breakfast, 20 for snack, 50 for lunch and so on.    And these meals must be spaced apart at certain intervals.   And counting carbs can be tricky!  Jason is better at it than I am, but sometimes it’s a guessing game,  especially if you aren’t exactly sure how many carbs are in a recipe or food item.

9.   Diabetics must work at keeping their blood sugar within a certain range.   For Sarah – because she is young – we have a broad range of keeping her blood glucose levels between 5 and 10.   Below 5 is considered low, and should be treated with juice or another form of sugar to bring her sugar back up.   If her sugars are consistently higher than 10 three times in a row , we would have to start checking her urine for ketones… but I’ll get into that later. 🙂

10 . If you take Sarah out one morning and forget her diabetes kit and forget to bring along her morning snack, you can lose your mommy badge… ha!   Don’t laugh, it’s happened and I’m not proud.  But it just goes to show that for me caring for Sarah hasn’t become second nature yet.  Thankfully Sarah is in what they call the “honeymoon” period right now.   Her body hasn’t completely destroyed all her beta cells and she is actually making a tiny bit of insulin for herself.  This makes it a little bit easier to regulate her blood glucose levels right now, but still… I have to learn to think about Sarah’s diabetes all the time and even though I can get distracted by Ava, I can’t forget that Sarah depends us to keep her blood glucose levels in range.

And one of the biggest things that we’ve learned is that once again we are surrounded by people who are supporting us, and are caring for us even in this.  From Jason’s mom who has picked up the carb counting and needle giving with ease, to our neighbour Sheila who helps out and will feed  Sarah and give her her needles if we are away.   And her teacher Melinda, who has cheerfully taken on the burden of care for her at school.    And then there is our friend Dave who was also diagnosed with diabetes when he was young, who stopped by to meet Sarah and bring her a gift and chat with us.    It’s been a huge blessing.

When we sit down and think about Sarah having diabetes, it still makes us cry, but by God’s grace once again we’re getting through, which really is the story of our life right now.   We are so thankful for God’s goodness.

And now I hope that you don’t mind that I’ve shared this and hopefully you’ve  learned something too.