Tuesday, July 8, 2014

Norah is pumping



Remember how I told you might learn more about type 1 diabetes than you wanted to?  Well this is one of those posts.  But please, don't stop reading, bc next time you are out and about and see a little kid on an insulin pump you will think differently of the child and of the parents.

We started Norah on her Insulin pump 2 weeks ago
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What the heck is an insulin pump?

Basically it's Norah's life line

It's an alternative to 4 daily insulin injections

It is a device that is inserted into Norah (yes inserted, as in a giant needle places a catheter type device into Norah's bottom)  and trust me, it's not fun inserting it, especially when you have to do it every 2 DAYS with 3 kids running around you!  Anyway, it's inserted into her bottom and delivers insulin through a tube which is connected to a mp3 type device. Here's a photo
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My first thought was, "ok so Norah doesn't have to get 4 daily injections, just a horrendous injection every other day......  So why would I get a pump?"

It's because the dosaging is much more accurate!  Norah is so little, sometimes the amount of insulin she needs is way less than I could ever give her with a needle, so it's healthier for Norah.

So basically a pump helps you better control the diabetes, along with a healthy low carb diet (this is where people will disagree).  According to the Dr and hospital staff Norah can eat whatever she wants, just give her more insulin.  That is simply not true!  It does not work for our little Norah...
I digress, back to the pump.

So, the pump is like a 1980's mp3 player and we input how much insulin she recieves every hour and how much she recieves every time she eats.  It's like a giant, 2 trains coming together from chicago and New York,  math problem!  If Norah's blood sugar is to low, that means we need to reduce her insulin, if Norah's blood sugar is to high, we need to increase her insulin.  Sounds easy, if I were an actual pancreas, but unfortunately (or fortunately) I am not.  I don't know how much insulin Norah needs when she sleeps, or when she plays, or when she grows, or throws a fit.  I don't know how much she needs when she is overheated, swimming, or stressed out.  So it takes a few weeks to figure out, to watch her trends, count her carbs (very accurately), test her at night and change her insulin needs.  But don't worry, once we figure it all out Norah will grow, or get sick and it will change.....she is only 5 so this growing thing, yeahhhh not gonna go away for a while.

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I'm still glad we have a pump though!

Plus it wouldn't be 2014 if there wasn't a stylish way to wear the pump.  So I special ordered  from etsy this pump belt for Norah to wear
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Oh and we also have a Glucose monitor, that we inject, yes another awesome big injection, into Norah's arm and it keeps track of her blood sugar all day.  DSC_0463 

This also helps us better adjust her pump settings.  Sounds great, right?  Well, it is if it were totally accurate, but it isn't, and we still have to poke her finger 4-6 times a day.  But it is a very good guide and gives us trends, and it only took one day of her wearing it for me to realize Norah can never have cereal from the box again  (even what I considered healthy, high protein, high fiber cereal.....).

Ignorance is bliss sometimes, because with the glucose monitor I can see what food does to Norah right away, hence the no more boxed cereal.  

I allow Norah to not like diabetes, when she is frustrated about it, I let her be, because it frustrates me too. But she amazing me all the time!  My little pumping Norah is a trouper! I can tell you that I would not want to sleep with an old pager attached to my hip, nor would I want to run around and play with that thing on, or get horrendous injections every other day.  She just does it, even though tears flow as the injections come, she continues to go run and play when we are done.  She goes potty with this annoying contraption attached to her, and she just does it like it's NBD.  She swims, she runs, she laughs, she eats (ways healtier than most chidlren),  and she is a 5 year old.  She just needs this life line to survive.

#istillprayforamiracle

4 comments:

  1. So glad you were able to get a pump and that it is going well! Norah and your family are in my prayers. What a precious girl she is. And what good parents you guys are. This has obviously been super hard on you, but you've never stopping fighting and working for what is best for Norah.

    I was wondering if you would mind sharing some of the dietary things you've learned, like how you do quick breakfasts and snacks for Norah. I think a lot of moms would like to give their kids healthier things but we just don't know all the options available to us besides the proverbial boxed cereal.

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    1. Melissa, great question!!! I make a lot of stuff for Norah, but in bulk. . She eats a lot of eggs, greek yogurt , berries and homeaide items for breakfast ( I make her cereal and bagels ahead of time so I just grab from the fridge/freeze). Norah eats a lot of nuts, cheese, frutis and veggies for snacks, and when we are in a nut free area I have made up a trail mix that is nut free (it has pumkin seeds, sunflower seeds, hemp seeds, and sugar free chocolate). I have also learned how to make low carb snack sand breakfast bars. I use a ton of almond and coconut flour, so if you have a nut algery you might die in our house! We also used a lot of almond butter and peanut butter.

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  2. Thought you might find this interesting about how avoiding wheat and going gluten free has 'cured' this woman's son s diabetes. Even if it's not a cure, it seems you aren't alone in finding that carbs are terrible for managing diabetes for children. http://www.wheatbellyblog.com/2013/04/type-1-diabetes-cured/

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    1. yes, wheat is terrible for people with diabetes and even if going wheat free doesn't cure it diabetes (which I don't believe it does), it certainly helps manage it better. However, you have to be careful with "gluten Free" because many gluten free items are made with corn and potatoes flours and they have even more carbs than wheat flour and spike blood sugar.

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