The Words I Have Been Looking For...

Found this on one of our Facebook diabetes favorites. It explains so much of what I think and feel everyday, EVERYDAY.  It seems the more you research and inform yourself, the more fear you build. 

Diabetes is a disease which has caused me to realize that a child can be at death's door faster than one could ever have realized, but be given the strength to be back on the soccer field a few weeks later.

Diabetes is a disease which causes a premature separation of the parent and the child, but at the same time creates a heightened level of dependence.

Diabetes is a disease which makes you realize that you may not always know the right care for your child, but at the same time must trust your child to the care of others who know even less.
...

Diabetes is a disease which forces disclosure about a "disability", but at the same time makes you realize how very lucky you are.

Diabetes is a disease which makes you realize that reading can inform, but it can also create fear.

Diabetes is a disease which causes us to think "Gee, I'm glad it was her and not one of the others....", but then you wonder how you could have ever thought such a thing.

Diabetes is a disease which makes you communicate hourly with your spouse, but at a time when you may not want to.

Diabetes is a disease which makes you wonder why, when your spouse gives a shot it doesn't hurt, but when you do, it does.

Diabetes is a disease which forces you to realize that the endless "nighttime feedings" of your infant will not pass, but will only be transferred to another child. (Surely dual alarm clocks are a good thing!)

Diabetes is a disease which requires some restriction of cultural celebration, but at the same time provides a most healthy intake of calories.

Diabetes is a disease which necessitates the restriction of concentrated sugars for good health, but requires you to carry pure sugar in your purse to save your child's life.

Diabetes is a disease which requires a rigid family schedule in both meal planning and timing, but at the same time has made running a busy household more smooth.

Diabetes is a disease which requires restricted food choices, but at the same time has provided an opportunity for culinary creativity.

Diabetes is a disease which make you think you can't possibly squeeze anything else into your life, but then you realize that you can.

Diabetes is a disease which causes you to ponder that "Now, I lay thee down to sleep, I pray the Lord your soul to keep....." is no longer a simple prayer, but a fervent request.

 

This picture was taken less than 30 minutes before she was diagnosed, so hard to believe even still.

Happy National Diabetes Awareness Day

 

Kyli had a wonderful day. To those that wore blue...THANK YOU for supporting Kyli and for supporting our family.  Kyli may have diabetes, but is does not rule her!!

 

It's Not Easy

Today was a rough day...Mind you, Kyli was in excellent spirits, but her sugars...WHAT THE HECK?! She ate like normal, nothing unusual, nothing special, so sugary treats and WOWZA. Her sugars were off the charts!  She woke up fine, had breakfast, 2hrs later, almost 300!  Had lunch gave her a shot, took a nap, woke up 55, WHAT?! Gave her some carbs to boost back up to 80, gave her a snack, before dinner 300, AGAIN?! Fed her dinner, gave her a shot, before bed 258, HUH?! Not sure what happened today, but I am hoping tomorrow gives us a better set of numbers.  I am still confused as to what happened, maybe our Dr. can make sense out of it on Friday, here is hoping. 

Anyway, I thought I would tell you briefly of some of the complications that can arise for Kyli in the nearer future.  Here are some of the things that most people will never know.  When puberty hits for Kyli, the hormones can be affected by her diabetes.  This can give Kyli early onset of puberty, average for non diabetic girls is currently around 10, you do the math.  If Kyli's sugars are hard to control, it can make puberty not as effective as a normal child, meaning she may not develop properly, growth could be stunted, she may end up looking like a child.  We have a friend who is a brittle diabetic, meaning it is very difficult to handle, he is a year younger than me and still looks like he has yet to hit puberty, including no voice change, no facial hair, nothing.  I cannot imagine how difficult that must be and on top of that I cannot imagine how cruel the kids were to him.   Finally, it means she could start puberty late, personally, this would be ideal in my world.  Kyli has had to experience so much in her young years, that this would be okay.

On top of these worries, I have been told that puberty is more difficult for diabetics because the new hormones can make managing their diabetes more difficult, doesn't that just sounds like fun.   Hopefully, I can continue my open communication with Kyli and we can keep her as healthy and happy as possible during the teenage years.  What happened then can make a huge difference on when she is older.  Hopefully we can prevent a moment of the "I Don't Cares" as well and Kyli will not end up in the hospital.  So far, almost every person I have talked to, this has happened in the teenage years and they have each ended up in the ER from it.   UGH.

Diabetes Awareness Month- Week 1

Hello everyone,

November is diabetes awareness month, with that, I am going to ask everyone to wear blue every Friday and especially on Wednesday November 14th to show support to those with diabetes and those with family members or friends with diabetes.

Diabetes does not just effect the person with the disease.  It effects the whole family.  Since Kyli was diagnosed, about a month and a half ago, our whole life has changed.  All of us, Kyli, Mike, Noah and for me.  Kyli has had a lot of change because of the consistent finger pokes 5-10 per day and shots.  She continues to handle it like a champ.  We have had only 2 bad shots and by bad, I mean she cried.  For Mike and I, I think we have had the mos change.  We might as well have diabetes.  We ensure Kyli is taken care of, check her sugars, watch for signs that she is going low or high.  Noah has had a lot of change as well and he has adjusted quite well.  For him, he has lost some attention, but he has become quite involved with Kyli's blood sugar checks.  We have also had a house overhaul.  We have one bag of candy for when Kyli's sugars are low and then we have one treat.  We have had to watch what kind of snacks we have in the house and try to ensure that the snacks are lower carbs so Kyli can have them.

Sleep has also been changed for me.  I am constantly getting up and checking on her and I panic in the morning if she sleeps late. I usually end up going to check and her and accidentally wake her up.  Night time is the scariest time for me.  Mike and I always make sure she is good to go to bed with healthy sugars and such, but last night we had to give her a larger shot than normal and I was nervous and of course she slept late.  Mike has been so awesome too, he knows that I cannot sleep if I am worrying about her and he got up and checked on her for me.  He will do middle of the night blood checks for me, if I am concerned about her sugars before bed.  A lot of times, Mike comes to bed later so he will just check her before he comes to bed. 

This has not just affected our household, both of our Grandma's who watch Kyli have had a change in caring for her and both of Kyli's Grandma's have had to change how they care for her.  Before Kyli's diagnosis, I had finally cut the apron strings and let Kyli stay the night at Grandma's house and now, I feel like we are back at square one, I am terrified to leave her anywhere.  Kyli has yet to stay the night anywhere.  It is not because I don't trust them, I do and they will take great care of Kyli.  It is because we know how her sugars work best and where she needs to be in order to keep healthy sugars throughout the night.  I will get there and it will be good once we get her to stay, Mike and I could really use a date night. Until then we are doing our best to understand how Kyli works so that we can spread our knowledge with our loved ones.

The saddest idea for me is that Kyli will never get a break, diabetes is 24/7 and she cannot take a break. It will always be there and we will always have to be on our toes. We will have to watch her at home, on vacations, birthdays, school, always.  If we do not, it can cost Kyli her life. She will not get to just eat to eat.  She has to eat for energy, for sugar, for her health. Mind you, while we have to feed her for healthy, she can still have treats as long as we keep her sugars in order and it helps if we plan accordingly.

As I have said before, this will not hold Kyli down, it is only a characteristic of her and not all she is.  She is going to thrive and make an impression on the world!

Our little Mad Scientist