Wednesday, December 12, 2012
Sunday, November 25, 2012
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.
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.
Wednesday, November 14, 2012
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!!
Saturday, November 3, 2012
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.
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.
Friday, November 2, 2012
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!
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
Tuesday, October 30, 2012
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.
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.
Sunday, October 28, 2012
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.
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