That Stinks. . .

Let me just say this first.  I am not looking for sympathy or a "you poor thing." I just want to try and let people understand what I am experiencing right now.

When Kyli was diagnosed, Mike and I had A LOT going on and we still do.  I came into contact with a lot of people.  When I tried to explain that Kyli was diagnosed, a lot of people said, "That stinks." I was so upset, by the response. Devastated.  Now, I know that people will say that sometimes when they don't know what else to say, but I got that response about 7 out of 10 times, besides my family. 

When people told me that, it felt like people were saying, "That's not so bad." or " That is not a big deal." Let me tell you, this is a HUGE DEAL. Kyli's life has forever been changed, our life has forever been changed.  There are things that Kyli will never get to experience that most kids do.  She will do things that will scare the crap out of me and at some point will end up in the hospital because of her having diabetes.

Did you know that the 2nd leading cause of death is diabetes? See, you body relies on glucose to live.  That means, your brain uses it for fuel.  At night, and this is when it mostly happens, people with diabetes sleep and while they do, their bodies and breaking down the sugar in their bodies.  Sometimes, their sugars get so low that they don't have enough glucose to feed the brain, the brain shuts down and then... well you get the picture.  There are some awesome monitors now, but Kyli is not able to be on a pump yet, so we cannot have this.  Am I scared, yes I am. Luckily, I have an awesome husband and we both ensure that Kyli is at a good sugar level before bed. 

Moving on, if you ever have talked to someone with diabetes, they will tell you that they have at least once, bottomed out and came to at a different location.  Sometimes, their sugar levels drop so fast they cannot see it coming.  Somehow and only sometimes, there brain goes into a survival mode and they get to sugar. It is amazing, but imagine what could happen during that sugar low. 

What makes me sad, Kyli will never have the same experiences as other children. She will not be able to binge on food when she is older like most teenage kids do.  It can mess with her sugars something fierce and take her days to feel better. Kyli will have to eat, even when she is not hungry in order to maintain a healthy sugar level.  She will not be able to eat a bag of popcorn or a bag of skittles for breakfast.  Drinking can kill her, it makes sugar levels drop ridiculously quick.  Although, I will be happy if she never drinks alcohol, just sayin.

When Kyli is physically active, she does not have an option, she has to eat something healthy otherwise she can bottom out.  We have to keep an emergency syringe in her kit (the red container) that needle is long enough to go through clothing.  It is specifically for when she has a sugar low so serious that she is not responding and is unconscious.  Now, I don't know about you, but no parent ever imagines their child having seizures on them, but there is a chance that they may happen if her sugars get low enough.  I also never imagined giving my child shots in order to keep her healthy, but I do anything in order to keep Kyli healthy. 

With that all being said, I do want to say that the medicines they have now are AMAZING even from 20 years ago when I was little and watched my Mom deal with her diabetes.  Kyli is going to live a quality life with some challenges, but she is going to thrive because they have made diabetes manageable.  I cannot wait for Kyli to get a pump, they now have monitors that will alert us if her sugars drop below a certain level. Cannot wait for one of these, seriously. 

I think another reason this hurts so much is because, I have already experienced so much with diabetes with my Mom.  She was blind for about 2yrs when I was in middle school, trust me, I remember this. I remember this all while thinking she had seen me grow up and she needed to get her vision back in order to watch my 2 yr old sister grow up.  Two years ago,her kidney disease became so bad that she had the option of dialysis or a kidney transplant. Luckily, my Aunt, her sister gave her a kidney.  Blessed, yes we are, my Mom's vision is better now than before her eye surgeries and her new kidney is healthier than most peoples kidneys. 

I guess, what I am trying to say is while I don't want anyone to have to live in our shoes...I just want people to try and understand that Mike and I have to be checked into Kyli 24/7.  We might as well have diabetes.  We are responsible for keeping her healthy, safe, and at the healthiest levels possible.  That being said, what 2 year old has ever eaten everything their parents want them to. 

And just so you can have a small idea, her are some of her goodies we have accumulated since her diagnosis.

Change Up

Since Sept 22,2012, Kyli has been on a daily dosage of Lantus.  What started at 1 unit, dwindled down to .5 unit, and the down to .25unit...Well, she kept bottoming out at night, meaning that her range is 80-200 for her sugars, she was in the 60's and 70's.  For her that is low and potentially dangerous.  So, on Thursday they said take her off of it completely.  Luckily for us, Kyli's pancreas is still working some...So she went the weekend shot free.  We figure we will enjoy it as much as we can, while we still can.

Today, I called Kyli's doctor and she said that we are going to try a small dose of Humalog when she eats 30 grams or more of carbs per meal.  While this is a little more intense because it is with meals.  I think it will help A LOT with her sugar lows.  It is going to be harder on us and the Great Grandma's, but we all just want Kyli happy and healthy, so we will do whatever we have to. I just want Kyli to feel good and stop having lows.  They are awful and she shakes so bad.  We are looking forward to finding Kyli's happy numbers and sticking with them.  It just takes some practice and we need it.

Perception Change

 

It is amazing how quickly things change.  This photo was taken one week prior to Kyli being diagnosed with diabetes. Kyli was healthy and carefree.  It is amazing how one word can change your whole world, FOREVER.  I look at Kyli and I see so much.  The one thing I hate seeing is diabetes.  It will NOT stop Kyli from doing anything she wants, but it may slow her down a bit, sometimes.  That angers me so much and I cry for her.  She will never know the luxury of eating anything you want and not worrying about it.  She will be counting carbs her whole life and it won't be because she wants to lose weight or be healthier, it will be because she has to.

 

 

 

One thing that sticks out in my mind is how we view candy. Candy used to be a treat for potty training or just because.  That has for the most part been eliminated and the candy is now a sugar booster.  What makes me so sad is that, usually now when she is eating candy, she is having a bad low and is inhaling it due to necessity rather than enjoying it, she is semi-incoherent. Mike disagrees with me on this, and I am okay with that. Every now and again, Kyli gets a treat just because, but for the most part it is necessity and she is usually shaking and needs help.  While we still are not feeling the full diabetes, what we are getting is enough.

 

I do not want you to feel as though we are feeling sorry for ourselves or Kyli.  I just want you to know our changes and how I feel sometimes.  Kyli is doing amazing still!! She does not cry for sugar checks or shots.  She just does it and moves on.  She is my hero, my inspiration.  She will never know any different than what she gets, becuase she will not remember anything before having diabetes.  While that is great for her, I still know the difference and it makes me sad. Everyday though, I look at her and think, she is going to do amazing things and I want her to show the world that nothing and no one can stop her.

 

 



Almost 1 month with Diabetes

In celebration of surviving our first month with diabetes, our family participated in the Stepout to Walk to Stop Diabetes.  We raised almost $1000, by the way, we are still taking donations for the next month...most of all we got to be around others with similar lifestyles.  It was amazing and we were able to see some amazing products that excite me once Kyli is on a pump.  It was awesome to have family come and support us.  Thank you!!!

Back to the products, my BIGGEST BIGGEST FEAR is Kyli bottoming out at night and we do not know until it is too late.  Well, my fears can be soothed...once she is on a pump. They have a wireless monitor that can be placed in our bedroom that monitors her.  It she drops below a certain number, it will go off and alert us!!! So awesome!! Kyli can be a fast dropper, one minute 200, the next 60.  Scares the junk out of me.  So this will let us all get some better sleep at night. And it will keep her feeling better. 

We have already discovered some of her symptoms for highs and lows...When he has high sugars, dear heavens she is the crankiest child EVER and I do not recognize her.  She just cries, even when I soothe her.  it breaks my heart and I curse diabetes every time.  Her lows are completely different, her eyes become glazed over, she gets cold, lethargic, and can start to shake a bit.  Once you know and try to feed her, it is can be like trying to feed a drunk...messy.  During these times, I just hold her, but she has become defiant and will fight you. ALWAYS when you need her to eat, she will refuse for a bit.  Makes me crazy!!! Overall, I think we are getting a hang of this. But we are blessed because Kyli still has some use from her pancreas so we are not on all the insulins we will be on in a bit. 

The biggest positive, Kyli is still one Spunky Monkey!

On a wonderful side note, Noah is amazing with the adjustments our family has made.  He has been allover making sure her sugars are checked.  He constantly is yelling we need to check her sugars even if we already he, but he didn't see.  I love him so much and as much as they have been fighting, he sure loves her!!