Every year, we walk in the JDRF Walk to Cure Diabetes. Around the walk date a couple years ago, I started an "annual" update over email to our church family and a few friends. Last year, I never got around to the update. Yes, we were busy, but I think I also just didn't have the heart to share Kaitlyn's news, especially when it was still so easy to ignore it. This year, I've decided that this is where our update belongs. I'll recap a bit for friends who are seeing this for the first time.
Our lives changed on January 25, 2008 when Andrew was first diagnosed with type 1 diabetes. Type 1 diabetes is an autoimmune disease that attacks the pancreas and its ability to make insulin. Andrew immediately began a lifesaving regimen of at least four shots a day of insulin. He had to check his blood sugar before every meal and before bed and any time that he didn't feel right to see if his blood sugar was too high or too low. A year later, he switched to an insulin pump, which allowed for more precise doses of insulin and gave us more freedom to adjust his insulin when he is active or sick. This past January, his first pump went out of warranty, and he upgraded to a touch-screen pump called the t-Slim. He is a very active young man, and blood sugars and insulin sensitivity are very affected by activity. Andrew would have lows hours after games and often at night while he was asleep. Last Fall, he upgraded to a new dexcom continuous glucose monitor which gives us much louder alarms at night when he is low. It has brought us great peace!!! I sleep so much better knowing that I will be able to hear if Andrew needs me in the night. So, this year has been one of good technological advances. It has also been a good year for Andrew personally. Though I could tell many stories of diabetes at the ball field, Andrew has persevered through it all and stayed dedicated to being an athlete. His hard work paid off last weekend when Andrew made the middle school baseball team ... despite having diabetes! We are so proud of him!!! He has also been playing football for the first time. Being at middle school, he has been much more independent in his diabetes management. He has done a great job taking care of diabetes and learning football at the same time.
Kaitlyn was officially diagnosed with type 1 diabetes in March of last year. She was diagnosed through a research study called Trialnet when she failed two successive oral glucose tolerance tests. She is still handling a normal diet though and isn't requiring any insulin! Praise God!!! She sees an endocrinologist every three months. We have seen her A1c (3 month blood sugar average) creep up slowly from 4.9 to 5.1 to 5.4 this last visit. Though still well below the 6.0 mark, we note the change and just keep an eye on her. She checks her blood sugar twice a week first thing in the morning and a couple times a week after dinner. Doctors are certain that she has the disease and that insulin dependence will come. In the meantime, we thank God for the time that she has without the worries that diabetes brings with it.
We ask that you pray with us that Kaitlyn continues to not need insulin for a very long time. Please pray for God's protection for Andrew against the complications that are associated with diabetes (kidney failure, heart disease, blindness, loss of lower limbs). Good control helps, but sometimes complications still come. Please pray for wisdom for Andrew and us as we have to make frequent and quick decisions about how to handle diabetes given the amount of food, exercise, etc. Thank you so much!!!
Here is a link to a video that Kaitlyn and Andrew made together two years ago:
Walk Video 2011
If you are interested in donating to JDRF, the link in the video is old. Try this one:
Donate to JDRF
Thank you!!!
Saturday, September 14, 2013
Saturday, January 26, 2013
Five Years!
Five years.
Five years ago today, Andrew was diagnosed with type 1 diabetes. I've thought about this milestone as we approached it, but the great thing is I didn't realize this was the day until thirty minutes ago! Diabetes is no less important, but I love how it has become less consuming in my thoughts. I don't know if anyone else thought of it today either. Of course, thirty minutes ago when I wandered in to check on Andrew and saw his blood sugar was rising despite a correction, diabetes had my sudden attention. I sent Andrew in to check ketones, and when he asked me to get him some water, I knew what the result would be. Yes, ketones. Either his site was bad or he is starting a tricky illness. He doesn't feel good, but it is hard to tell if sickness is causing the ketones or ketones are causing him to feel sick. We did a site change and a full correction. I honestly believe he will be fine by morning, but I'm definitely checking on him in a couple of hours.
Five years.
We have come such a long way. The first year, every day was new and difficult. Every meal was hard to carb count and dose and every new adventure at school or with friends had to be planned so that he could be safe and still act like a normal kid. It was so exhausting. I remember when he said he couldn't go to AWANA at a friend's church because he had diabetes. I replied, "Of course, you can!" and thought to myself, "Now how am I going to make THAT work???" But we did. He was seven then, and he is twelve now. He has grown so knowledgeable and responsible. He can carb count his own meals and dose his own insulin through his pump. He can go to a friend's house and carb count and take care of his diabetes all by himself. He really is amazing. Day to day life is less stressful because we have seen and dealt with so many situations already.
Five years.
I hate diabetes more now than in the beginning though. I thought then that I would somehow figure out the patterns, everything would get better, and that his numbers would be great. I'm disillusioned now. I'm tired of calling in numbers and even the nurses not seeing a pattern. Control is a myth and an ideal to strive for but lows and highs are going to happen. Sites fail. Like tonight. I just wandered back in there and now Dex reads High and headed up slanted. I read recently about three clinical stages of type 1: not requiring insulin (Kaitlyn), needing insulin for control (Andrew five years ago), and needing insulin for survival (now). If the site was bad, it was fine at lunch, so ketones developed in a matter of hours. It's really scary how quickly he can get sick. His lows seem a little scarier now too. That's sad, but normal too. I hate diabetes.
Five years.
I'm thankful for the new tools that we have to fight diabetes. The pump is so much easier than pulling out shots all the time. Dex, our continuous glucose monitor, has been a lifesaver, literally. Andrew doesn't wake up in the night when he is low, so that low alarm is priceless. If you're convinced he would wake up if he is low enough, go back and read the blog about the night he woke up low, but couldn't move or talk to get help. We upgraded to the new Dexcom 4(http://www.dexcom.com/dexcom-g4-platinum) in December, and the alarms are so much easier to hear! It looks cool, and the range is so much better. The old Dex would say out of range when he rolled over in bed. The new one picks up from the stands almost the entire time he is playing basketball! This coming week, Andrew is getting trained on his new pump called the t-Slim (http://www.tandemdiabetes.com/Products/t-slim/Slim-and-Sleek/). It has a touch screen and holds 100u more insulin per cartridge, which will be important as he approaches his teen years. I'm hoping he likes it as much as he thinks he will since he is stuck with it for four years. I am excited about the potential of the dexcom and pump working together to keep his blood sugar in control with an artificial pancreas in coming years. Technology is great when it works. I just checked on Andrew again. Dex says he is High, but headed down slanted. The new site is working, and Dex lets me know how he is doing without waking him and poking his finger.
Five years.
We have met amazing people and some great experiences because of diabetes. We've grown and learned so much. Andrew is healthy and happy. It may not have been easy, but it has been a good five years. Camps, parties, friends, trips, talks, sports, etc.
Yes, five good years, even with diabetes.
Five years ago today, Andrew was diagnosed with type 1 diabetes. I've thought about this milestone as we approached it, but the great thing is I didn't realize this was the day until thirty minutes ago! Diabetes is no less important, but I love how it has become less consuming in my thoughts. I don't know if anyone else thought of it today either. Of course, thirty minutes ago when I wandered in to check on Andrew and saw his blood sugar was rising despite a correction, diabetes had my sudden attention. I sent Andrew in to check ketones, and when he asked me to get him some water, I knew what the result would be. Yes, ketones. Either his site was bad or he is starting a tricky illness. He doesn't feel good, but it is hard to tell if sickness is causing the ketones or ketones are causing him to feel sick. We did a site change and a full correction. I honestly believe he will be fine by morning, but I'm definitely checking on him in a couple of hours.
Five years.
We have come such a long way. The first year, every day was new and difficult. Every meal was hard to carb count and dose and every new adventure at school or with friends had to be planned so that he could be safe and still act like a normal kid. It was so exhausting. I remember when he said he couldn't go to AWANA at a friend's church because he had diabetes. I replied, "Of course, you can!" and thought to myself, "Now how am I going to make THAT work???" But we did. He was seven then, and he is twelve now. He has grown so knowledgeable and responsible. He can carb count his own meals and dose his own insulin through his pump. He can go to a friend's house and carb count and take care of his diabetes all by himself. He really is amazing. Day to day life is less stressful because we have seen and dealt with so many situations already.
Five years.
I hate diabetes more now than in the beginning though. I thought then that I would somehow figure out the patterns, everything would get better, and that his numbers would be great. I'm disillusioned now. I'm tired of calling in numbers and even the nurses not seeing a pattern. Control is a myth and an ideal to strive for but lows and highs are going to happen. Sites fail. Like tonight. I just wandered back in there and now Dex reads High and headed up slanted. I read recently about three clinical stages of type 1: not requiring insulin (Kaitlyn), needing insulin for control (Andrew five years ago), and needing insulin for survival (now). If the site was bad, it was fine at lunch, so ketones developed in a matter of hours. It's really scary how quickly he can get sick. His lows seem a little scarier now too. That's sad, but normal too. I hate diabetes.
Five years.
I'm thankful for the new tools that we have to fight diabetes. The pump is so much easier than pulling out shots all the time. Dex, our continuous glucose monitor, has been a lifesaver, literally. Andrew doesn't wake up in the night when he is low, so that low alarm is priceless. If you're convinced he would wake up if he is low enough, go back and read the blog about the night he woke up low, but couldn't move or talk to get help. We upgraded to the new Dexcom 4(http://www.dexcom.com/dexcom-g4-platinum) in December, and the alarms are so much easier to hear! It looks cool, and the range is so much better. The old Dex would say out of range when he rolled over in bed. The new one picks up from the stands almost the entire time he is playing basketball! This coming week, Andrew is getting trained on his new pump called the t-Slim (http://www.tandemdiabetes.com/Products/t-slim/Slim-and-Sleek/). It has a touch screen and holds 100u more insulin per cartridge, which will be important as he approaches his teen years. I'm hoping he likes it as much as he thinks he will since he is stuck with it for four years. I am excited about the potential of the dexcom and pump working together to keep his blood sugar in control with an artificial pancreas in coming years. Technology is great when it works. I just checked on Andrew again. Dex says he is High, but headed down slanted. The new site is working, and Dex lets me know how he is doing without waking him and poking his finger.
Five years.
We have met amazing people and some great experiences because of diabetes. We've grown and learned so much. Andrew is healthy and happy. It may not have been easy, but it has been a good five years. Camps, parties, friends, trips, talks, sports, etc.
Yes, five good years, even with diabetes.
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