Our dear brave girl

Finally I’m going to update you on Sarah and her diabetes clinic… finally!   As you can see I haven’t been blogging that much, sorry about that.   Things have been busy, but not terribly exciting.   It is a little strange trying to get reacquainted with regular life.    In all honesty, I guess I’m finding ‘normal’ living a bit uninspiring.    The kids are all in school and yes I have a house that needs reorganizing etc, but after the stress and craziness of the life we were living,  life now seems a little flat.    But I’m not complaining, however I am side-tracking.  Back to our story.

So Sarah, our dear brave little diabetes girl.    Jason and I took Sarah to the diabetes clinic at the Children’s Hospital last week, where she goes every three months to see the endocrinologist.  She gets weighed and measured and they sit and have a chat with us about how things are going, and they also check her A1C levels.    Now I just had to Google ‘A1C‘ to make sure I really understood what it is all about, and basically it is a blood test that shows your average blood sugar over the past three months in percentage values.   Even though the Dr and nurses can see your daily  blood glucose numbers (that you’ve recorded faithfully in a little book) the A1C gives a nice over-all picture of how your blood sugar has been in the past three months.

In Sarah’s case – her result was 6% and that is perfect, and maybe actually be in the range of you and I.    It’s really just a testament of how well Jason has controlled Sarah’s blood sugar (thank you Diabetes Dictator! 🙂 ) and it’s a relief because the better her sugar is controlled, the better her health will be in the long run.   Now, we are being helped a little by the fact that Sarah is still in the honeymoon period with her diabetes.   When you have type 1 diabetes, your body is actually destroying your beta cells that make insulin, and that happens over a period of time.  Sarah clearly has a few of her beta cells left and so is able to still make a tiny bit of insulin, and it helps a tiny bit with controlling her blood sugar.   

We also found out at the clinic that we can start down the road of getting an insulin pump for Sarah – yahoo!   In Ontario, if you have had diabetes for a year and have kept your numbers under control as based on three good A1C numbers, the government will fund an insulin pump for you.   A pump will be a whole new ball game for us, because it will replace Sarah’s needles and instead will attach directly to her and constantly give her a steady trickle of insulin.    When she eats meals, you tell it how many carbs you have eaten, and it will then give you a bolus dose of insulin to help with your meal.   I’m sure a pump will change everything for us, in good and bad ways, but I’m ready for the flexibility it will offer Sarah and our family.  The only downside is that we have to wait a while, and likely won’t be able to get one until the new year.   But as we are currently managing just fine with how things are, a few more months won’t hurt us.

And Sarah is doing really well with everything… she is a trouper and one tough little cookie.   When she was first diagnosed she often didn’t want her needles and would make a stink about getting them, but now it’s just life.     Once in a while they hurt and she cries, but generally it’s a non-issue.    She is even good with food and that is the hard part.   She can only eat at certain times of day and can only have a specific number of carbohydrates  at each meal and it’s limiting, but she seems to have accepted it.  And she knows what she can’t have and there are times when others are eating things she can’t and that’s not nice,  and I feel bad for her, but if she gets upset I remind her that eventually she will get the pump!    She does all her finger pokes by herself to check her blood glucose levels 4 times a day and she never makes a fuss about doing those… I think she’s proud of the fact that she can do so much independently  and so she should be.

Sarah

Sometimes I look at her and I feel sad because she seems so much older than 6 years old.   She was forced to grow up so much this year with all the happened and I know it changed her.   She was diagnosed with a life changing disease, and had a very sick baby sister all at the same time.   And she loved Ava so much and then had to lose her.  It makes my tender mother’s heart just want to break for her.   But then again I don’t know what God has in store for her, or how He is going to use this to mold and shape her.  I’m glad God knows best because if it was left up to me I would shelter my kids from every negative thing in this world,  but then they wouldn’t have the opportunity to grow and be strengthened.   God has a plan for her just like He had for Ava and for all of us, and even though it’s hard to see your child with a disease that won’t go away,  I know I can trust Him.  And I do.  Hasn’t He proved Himself faithful over and over and over again?

So here is to our dear brave Sarah – such a monkey who is so strong but can also be so sweet.    We are truly thankful that everything is going well with her and that she is healthy and strong and we just praise God that she is in our lives.

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Diabetes Clinic

Today, Jason and I and Sarah went to the hospital for a diabetes clinic visit.  I was just at the hospital yesterday with Ava to see our Nurse practioner in the Cardiology clinic,  it’s like our new home, fun!  🙂  Oh and Ava is doing well and on the mend thankfully.   She started smiling and talking again yesterday,  so it’s such a relief to see her feeling better.

Now London isn’t quite big enough to have our very own hospital completely dedicated to children – but we do have different children’s sections in the hospital and everyone that we have met so far that works with kids has been wonderful – and that extends to our diabetes team.

We met our diabetes nurse and talked about how Sarah’s blood glucose numbers have been.  We met the dietician to talk about how our carb counting and meal planning have been going.  We quickly met Sarah’s endocrinologist – who is also going to be Ava’s endocrinologist.   And we met with our diabetes social worker.  His job to is to make sure that we are coping well, and that Sarah is doing well and to see if we need any extra help in any area.

So it was quite a long appointment, but very informative.   And I’m happy to say that I now am more comfortable with injecting glucagon – which is what we would need to give Sarah if her sugar gets so low that she wouldn’t even be able to take juice or any kind of sugar orally.   It’s a true needle – which is different then the pen needles we use to give her insulin, so it wouldn’t be as easy, but you gotta do what you gotta do!

Actually, before we left the hospital with Ava last week they talked about maybe switching her blood-thinner from baby asprin  to an daily injection in her leg… no!   But thankfully they decided that she was doing well and since she hasn’t had any problems with her shunt, they  left her on her baby asprin.    I’m so thankful.

I will say it again, there is so much to learn with diabetes, that I’m glad they set it up so that we can learn it slowly.  And Sarah did awesome and got blood work with not even a tear, she is a trooper!

These two girls…

SarahAva

They certianly love each other.  And maybe God gave Sarah diabetes so she would have more compassion on Ava and what she will have to go through,  only He knows.    But I’m just glad that we have these two girls, diabetes and heart conditions and all.

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.

We’re back…

So we are home again!   The cardiologist came to see me about 4:00 pm yesterday afternoon and said that all was well, both he and Toronto were happy with Ava and we could go home.    She had tolerating all her feeds perfectly after we moved her ng further down,  and even though her blood pressure is still a little too high, they have increased the dose of one of her meds so hopefully that should help.      I was a little nervous about the increase because she was on the highest dose of that drug already for her weight and now we have to worry about kidney damage…  yuck.  But as my mom says, there is no such thing as a medication without side effects and the reality is, little miss Ava is on a lot of meds, but at this point there really isn’t much choice so we just have to hope and trust that they aren’t ruining her rather than helping her.

And I think that I can say that I learned a few things through this.   One is that I have to make really sure that Ava isn’t being stressed in any way.  I think in bringing her home I was a little bit too relaxed in that she seemed so healthy and I was sure she was going to be fine.    But it’s just a reminder that I have to watch her like a hawk and keep better track of all the things that are going on with her so that patterns are easily identified – and through those patterns I can catch things quickly before they become big problems.   Thankfully it wasn’t a big issue that brought us to the hospital,  and a quick tweak seemed to fix it so that was very good, but I would rather avoid going there all together if possible.    It’s funny in a way, because the nurse practioner from Sick Kids had said to me just the day before that often these little single-ventricle babies have to make trips to the hospital  in this ‘inter-stage’ between surgeries  to get a tune-up.   They are there for a couple of days and then they go on their merry way again and hey – in the grand scheme of things, there is nothing wrong with that.

So we are home and back to our routine and it’s weird because now I seem to fully wake up at 3:00 am and have a hard time going back to sleep after I’m done feeding Ava, go figure.

And on another note, things seem to be moving in the right direction for getting Sarah back to school.  Jason met with a nurse from the CCAC yesterday so they could access Sarah and I think at least for the first bit there will be a nurse that goes to Sarah’s school at lunch every day to help her check her sugar levels.  And today a public health nurse is going to the kid’s school to do some training with the staff on diabetes so Jason is going there for that as well.  Training of the staff is the biggest hurdle in getting her back,  as they all want to feel comfortable with her and want to know what signs they should be looking for in terms of sugar highs and sugar lows.  So I’m so glad this is happening because we certainly don’t want them to be worried all the time!

So hopefully things should all work out well and Sarah should be back to school on Monday, although I don’t think she has minded her extended vacation.  And poor Sophia is going to miss Sarah so much!  Those two just play all day together and it will be sad to have to separate them.   It has been cute though, they play they are nurses, or that Sophia is a mom with a baby in the hospital.   And once I even over-heard Sophia say, “Pretend that I have diabetes… ok?”  Oh dear, well maybe not so cute after-all.

And then next week Sarah and Jason are going to meet the London diabetes team as our care has now been transferred from the team at Sick Kids to London.   Oh so much going on!  Once again, I am so grateful that Jason is managing Sarah through all of this!  I joke that sometime soon we are going to have to cross-train on the girl’s care, but for now I am so relieved to leave all the carb counting and insulin injections and appointments to him.

So that is where we are at.   And can I say yet again, that everyone’s support and concern for us has been so encouraging! We feel so loved and cared for, we are so blessed to be part of such a caring community and we appreciate it all so much.  And hopefully we stay out of the hospital for a while, because it really is good to be back!

Getting by…

We’ve made it through a week and have lived to tell about it!   Thanks to everyone who has helped us this week by dropping off meals,  or yummy goodies,  giving the kids something to do (Thanks Kim!) and for my mom who came and did five loads of laundry today and Jay’s mom for taking the kids and the list goes on.

And even though I’m still not resigned to getting only 2 hours of sleep at a stretch, we think we may have found a work-around where Jason does Ava’s midnight feed so if I got to bed early I get a 5 hour stretch of much needed sleep – yahoo!!!

And Ava is getting lots of cuddle time with her siblings..

SarahAva

And Sarah isn’t back at school yet.   Even though her school is fairly large, she is the first there with diabetes that needs help managing it.   So we are trying to work with them to find a solution to her eating her snacks at scheduled times,  checking her blood sugar at lunch and eating her afternoon snack.   It struck me the other day that if we weren’t dealing with Ava and her heart that this blog would be full of how our lives have changed dealing with Sarah and her type 1 diabetes, but Ava is rather trumping things right now.  But life has changed and I still am so greatful that Jason has taken this on and when it comes time for him to go back to work… well… let’s just say I’m not looking forward to that day.  And I do plan on sharing much more on the diabetes thing when I get a chance.  Thankfully Sarah is a trooper and although it’s made her grow up a ton,  I’m just so greatful that she is a strong girl and for the most part is dealing with everything well.

And thanks everyone for praying.  When things seem over-whelming, sometimes I am flooding by a sense of peace that I know can only come from God and I am so greatful for everyones prayers.

We are blessed.  This is not an easy life, but day by day we are getting through, praise God.

Two sick kids at Sick Kids

So tomorrow we will have 2 sick kids at Sick Kids hospital. Remember how I said that Sarah had been drinking lots? Well I took her to a walk-in clinic today and they pricked her finger to check her blood sugar levels and they were so high the monitor wouldn’t read it. The dr was so kind and said the best place for her was Sick Kids and wanted me to take her to the emerg there. So after giving Sarah and I hugs (she did!!) off we went.

And there after doing some test on her, the dr came in and told me that Sarah has type 1 diabetes. My beautiful sweet Sarah. Never in a million years would I have imagined this.

And we feel like we’ve been hit by a Mac Truck… I took Sarah in today to rule diabetes out – not get a diagnosis!!!

Jason said to me tonight that God never gives you more than you can handle – and isn’t it crazy what you can handle? But I’m not so sure I am handling this.

So I went back and read my post from the other night to remind myself that the danger of all dangers would be to lose trust and confidence in the mercy of God. And God must have been trying to prepare me because I had read this verse this morning…

2 Corinthians 4:8
We are afflicted in every way, but not crushed; perplexed, but not driven to despair, persecuted, but not forsaken; struck down, but not destroyed.

And its true. This diagnosis for Sarah hurts and it doesn’t make sense and we hate it – but I know we are not forsaken.

To God be the glory.