Honeymoon

What a beautiful day today!  Too bad it deteriorated into a thunderstorm tonight.  And apparently in our good old Ontario fashion, we are going to be experiencing high humidy tomorrow…  already, although it’s only April.  But it’s Ok, as long it’s not snow.

And I had to write tonight to say that Sarah is doing good.  Her blood sugar did spike last night along with her fever, but at that point we didn’t know if she had any ketones in her urine (because she was fast asleep) so we held off on giving her extra insulin and then waited until midnight to check her again.  Thankfully by then her blood glucose levels did come down a bit and we were able to check for ketones and didn’t find any, thankfully.     And then when I checked her blood sugar again at 4:00 am (was up anyway feeding Ava and pumping), she was below 10, where she is supposed to be, praise God.   It really is such a blessing that she is still in her honeymoon period where she is still making a bit of insulin for herself, and she does tend to self regulate at night.  We don’t know how long this phase will last – but we truly believe that God is arranging it so we don’t have as much stress and worry with her right now.   It’s just so weird dealing with diabetes and a bad cold – I can’t even give my child lemon tea with honey in it, which is frustrating, but hopefully before Christmas Sarah will be on the insulin pump and that will be such a game changer.   We are looking forward to it.

And it was fun to hang out with Sarah today and the sunshine today did alot to lift my spirits.   Sophia is staying for a few days with my mom, which is wonderful because Sophia likes to engage me all day long and then gets frusterated when I’m too busy to play with her.  Recently she has said a few times that she would like to send Ava away.  Oh dear.  I know she loves her but I can understand that for a three year old it would be fruaterating when mommy seems to spend all her time on the baby.   So I really appreciate it when mom and others that take Sophia off my hands occassionally.  (Thanks Dianne and Rachel!) And even though I’m sure  Sophia talks their ears off, she just soaks up the attention and though I’m sad it can’t be me giving it to her all the time, I know she benefits.

And now I think poor Ava may have picked up Sarah’s cold!   She seemed a  bit more snuffly again this morning and she might be coughing a bit more too .   I record a lot of information about her during the day – like her weight and her oxygen saturation levels, but I still don’t record how many times she coughs. 🙂   At least this week I don’t feel I need to worry as much about her heart, and know now what a cold can do to her, so hopefully we can avoid any more trips to the ER.   But please keep praying for her, we just don’ t want her to get any  sicker.

So tonight we are thankful that Ava is doing OK – that Sarah is manageable and that honeymoon periods for diabetics exist.  God is good.

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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.

Back to school

So Sarah is back to school, much to her chagrin. 🙂   Thursday was her first day back and she had a great day, and then Friday morning she was back to her old tricks and saying she didn’t want to go – but thankfully Jason and I know that’s ridiculous because she adores her teachers and always says she had a great day when she gets home.

sarahbacktoschool

An it looks like things are going to go well at school.  Her classroom has an alarm clock now that goes off for her snack times, and at lunch-time she goes to the office with one of her teachers to check her blood for her sugar levels.  And I think for the first while a nurse from the CCAC will be there at lunch too to make sure Sarah checks her blood Ok and eats all her lunch.   And that’s important because she needs to eat her carbs so she won’t get a low.   We are so appreciative to our wonderful school that has been doing everything they can to make sure that those that are taking care of Sarah know how to recognize the signs of highs and lows and I’m sure it’s tough for Sarah’s teachers as it’s one more thing for them to think about in a busy class of kindergarteners, but they have met the challenge and have just been wonderful. (Thank you Mrs. Murphy!!)

And there is a ton to learn about diabetes and I know that I still need to learn a lot.  Jason has been doing so much with Sarah that I always refer to him, but I’m hoping that when things aren’t so intense with Ava that I can get more involved.    It’s kinda funny though in terms of God’s timing, because if Sarah had been diagnosed when life was normal and I had taken on the learning and Sarah’s care, I’m not sure her diabetes would be managed so well.   Jason is a bit of a diabetes dictator and keeps Sarah on track quite strictly.  One night when Jason went to bed early I gave Sarah a snack of sliced strawberries, about 1/3 of a cup, so maybe just 3 carbs and he nearly bit my head off when he found out because Sarah isn’t supposed to get bedtime snacks.   And the funny thing is she was saying to me, ” I really don’t think  I should be eating this” but I convinced her otherwise,  crazy momma.   Boy,  I really hate diabetes.  And Sarah has been saying that lately too – she just hates it and when she says it, it  makes me want to cry because I know it’s not going away.     But we press on.   And I had a great idea tonight when I went for a walk about exploring more about living with diabetes, so stay tuned.

And Sophia is getting a cold, oh no!!!  I should have known as she’s been wanting to nap a lot lately…

Sophiaasleep

Last week when Sarah wasn’t around to play with Soph went downstairs, but ended up napping down there instead of playing.  But  now that she had a cold I’m so worried about Ava, as Ava has been coughing more and spitting up.  I’ve been praying that God would protect her and I hope He hears my prayer because she just can’t get sick,  she can’t!

And this week is our echo…  so please keep praying that Ava’s heart function hasn’t decreased anymore.

Lots to pray for.    Thankfully strength, peace and joy are free when we ask God for them.  I always like to think of it as an exchange… here God, you take my worries and I will take your peace.   I can always give Him my weakness and He gives me strength.    And here is a verse for me right now as I sit here hating Sarah’s diabetes and wondering if Ava will be OK…

Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.” Joshua 1:9 ESV

What an incredible promise and what an incredible God we serve.

AMEN.

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!