http://www.childrenwithdiabetes.com/ - Goodsite for anyone wanting to increase their knowledge and connect with other parents, family members, or friends of those who have diabetes.
http://arstechnica.com/news.ars/post/20081228-isciencei-names-top-10-scientific-breakthroughs-of-2008.html - My daily dose of optimism and belief in humanity's ability to conquor this nasty thing - Reprogramming cells to behave differently may have the key to reversing diabetes by making pancreatic exocrine cells behave like beta cells.
Monday, December 29, 2008
First Christmas with Diabetes
What a relief - the holidays are over. We're normally a pretty festive crowd in this house, and we certainly didn't hold back, but Mia was running a fever over the last couple of days. We've been learning more about Diabetes, enough to figure out that for all of the medical advances of the present age a lot is still unknown about the problem.
Mia was not wanting to eat anything during the holidays, so she kept running low. Grouchy, not hungry, and having daytime readings in the 50's to 60's - scary stuff for parents newly exposed to the finer points of the process.
We've now got her feeling better and sleeping well at night - a little readjustment to nap time and a creative menu has kept everyone pretty happy here. The trick it seems (for now, could change) is keeping her active, getting her out to play several times a day, and making sure that she's eating enough. And of course, checking, rechecking, and rechecking the rechecking. Mia has figured out that what was a new interesting routine of having a relatively painless prick is not going away, and she's not happy about it. You can tell she's just fed up, and tired of it, but she generally has a good attitude about it still.
I've found myself in a daily ritual of coming back into the office after working for the day and digging through whatever I can find online. I've been doing a lot of research on pumps, being the ever over analytical guy that I am have developed several databases for tracking glucose levels and carbs, and finally just decided to buy a piece of software built for transferring the information directly from the meter. I will find a way to incorporate gadgets into everything, regardless of the situation. Marisa picked up a great book 'The Everything Parents Guide to Children with Juvenille Diabetes' by Moira McCarthy. A good read - pretty high level, but reassuring and sombering at the same time. This is a serious illness, a life threatening one, and the sad reality of it is that even with great care, it is killing my daughter, reducing her life expectancy by 5-10 years by some estimations. That being said, we're an incredibly stubborn family, and we're up to the task of keeping her levels in check, teaching her how to live a healthy lifestyle, and never taking anything for granted.
As for how we're doing? We're fine. For all the heartache of the last few weeks, and there has been a lot of heartache, we're all still together. When you look further into this condition, and see how quickly things can go wrong in undiagnosed cases, we're just fine with having the changes to our routine. Diagnosed, it's something you may not (today) be able to overcome, but you can not just survive, but thrive. Mia is still a happy kid, playing around, she just gets annoyed with her parents several times a day. Which really is pretty close to normal after all.
Best wishes to everyone, and here's to great new year.
Mia was not wanting to eat anything during the holidays, so she kept running low. Grouchy, not hungry, and having daytime readings in the 50's to 60's - scary stuff for parents newly exposed to the finer points of the process.
We've now got her feeling better and sleeping well at night - a little readjustment to nap time and a creative menu has kept everyone pretty happy here. The trick it seems (for now, could change) is keeping her active, getting her out to play several times a day, and making sure that she's eating enough. And of course, checking, rechecking, and rechecking the rechecking. Mia has figured out that what was a new interesting routine of having a relatively painless prick is not going away, and she's not happy about it. You can tell she's just fed up, and tired of it, but she generally has a good attitude about it still.
I've found myself in a daily ritual of coming back into the office after working for the day and digging through whatever I can find online. I've been doing a lot of research on pumps, being the ever over analytical guy that I am have developed several databases for tracking glucose levels and carbs, and finally just decided to buy a piece of software built for transferring the information directly from the meter. I will find a way to incorporate gadgets into everything, regardless of the situation. Marisa picked up a great book 'The Everything Parents Guide to Children with Juvenille Diabetes' by Moira McCarthy. A good read - pretty high level, but reassuring and sombering at the same time. This is a serious illness, a life threatening one, and the sad reality of it is that even with great care, it is killing my daughter, reducing her life expectancy by 5-10 years by some estimations. That being said, we're an incredibly stubborn family, and we're up to the task of keeping her levels in check, teaching her how to live a healthy lifestyle, and never taking anything for granted.
As for how we're doing? We're fine. For all the heartache of the last few weeks, and there has been a lot of heartache, we're all still together. When you look further into this condition, and see how quickly things can go wrong in undiagnosed cases, we're just fine with having the changes to our routine. Diagnosed, it's something you may not (today) be able to overcome, but you can not just survive, but thrive. Mia is still a happy kid, playing around, she just gets annoyed with her parents several times a day. Which really is pretty close to normal after all.
Best wishes to everyone, and here's to great new year.
Saturday, December 6, 2008
Saturdays
Things are progessing. We're learning more and more about diet, how to balance things, complex carbohydrates as opposed to simple sugars, how to properly administer shots and have somewhat developed a routine of blood sugar testing, eating, and trying to read signs that Mia gives us.
Somehow I had not given an insulin shot to Mia until this morning (granted, today is only the third day since we found out). I was terrified. In fact when I stuck the needle in the first time and she flinched, I pulled it out quickly without injecting. So my poor daughter got stuck twice this morning for what should have been one injection because her Dad was scared of hurting her. I'll be doing the shots for the next few days so I can get used to it and get over my fear of hurting her, but it's absolutely dreadfull business, even knowing it doesn't hurt much.
The glucose tests are actually going much better - she'll squirm mainly because she can't believe someone would have the audicity to think that she could possibly be contained by ANYONE. She's got places to go, people to see, toys to pull around, books to reorganize. While she's very patient with the process, it just better not take too long. She's got a busy schedule.
The diet is very interesting - there's a lot of information out there, and our doctor/nurse team seem intent on dumming it down for us. "Just count carbs!" Okay, so is that simple or complex carbohydrates? How many calories do we need to get in her to help get that weight back that she lost? I have to say that my initial impression of the resources provided to you by your standard health care provider type scenario has been not just lacking, but absurdly limitted. We've turned to books and websites that seem reputable, and figure we'll call our doctor with any questions.
Some very good news today - Mia has balanced out somewhat. The first two nights we had lows reaching into the 60's - last night at 3:00 Am we had a reading of 280 (too high, but not as dangerous as a low). This morning - 190! Before lunch today, 135. We want her somewhere between 100 and 200 (from our research anyway - the initial appointment had NONE of this information).
You'll probably notice that I have not many nice things to say about the health care system and how it's functioning for us. Perhaps this will change, but my initial impression from my first few days of navigating the doctors who won't talk to you on the phone, the nurses who say they're going to call back and don't, the insurance companies that tell you what you can and cannot use to keep your daughter alive, regardless of the $500 a month premium paid to them.
I will say this: If you think the healthcare system in the USofA is not broken, you've never had a loved one with a chronic disease.
Thursday, December 4, 2008
There was something wrong
What started as a nagging suspicion over a few weeks took a turn for the worse. In reality, we can't complain. To be a parent is to worry (and love, and laugh, and many other things, but worrying is certainly a big part of the game), and we have an answer to our suspicions. Some parents find their concerns confirmed with even worse news, and some just never really know if they are being paranoid or if there is something that they should worry about.
Our little sweet and silly 16 month old hadn't been herself lately. Cranky, upset, just needed to be held. This is okay, Dad and Mom are both softies and don't complain about extra hugs when they can get them. But this was troublesome from this normally very energetic little girl. She had been very thirsty, and diapers were wet to the point that they would leak. We didn't think much of it, Florida gets dry in the winter, and we were happy that she was drinking more water, but the moods were concerning.
My incredible wife, ever the great mother, mentioned these concerns at Mia's 16 month checkup with her pediatrician. After a few tests, it became apparent that these concerns were legitimate - Mia had a blood sugar reading of 550 (a normal toddler should be between 100-200). Type 1 Diabetes.
After coming home to grab me, we spent the afternoon in the doctors office at the local childrens hospital, trying to learn all we could, and how our daily routine had changed. Two days later we're still learning.
There have been ups and downs, both in blood glucose levels and in moods (mostly the parent's moods). Mia's levels have ranged from 67 to 540 since then, while we try to work with our doctors to balance the insulin dose with the right amount of carbohydrates. There's no cheating on this diet...
Marisa's brother Corey as been our life-line during the last 48 hours. He's been living with Type 1 diabetes for 10 years now. He's been on speed dial the last couple of days, has been calling to check in on us, and has given us such great advice and is such a great calming influence. I honestly do not know how we could have gotten through this adjustment without him, and I know we're going to continue to rely on his strength, expertise, and love for Mia to geth through this.
Insurance has been another interesting adventure. Even with very good coverage, we anticipate our costs to be over $300/month at this point for all of her supplies. The doctors gave us a prescription for a lancer/tester combination that was not covered by our insurance company, leaving good old Dad making phone calls from the Walgreens parking lot to figure out what is covered. It's heartbreaking to think of families without insurance who have to go through this, even to think of those with insurance that have to navigate this maze. No offense to our doctors, but in the information age we live in, how hard would it be to give a prescription that is actually covered by the provider? Unbelievable.
Mia's low readings generally come in the middle of the night or early in the morning - 64 to 67. Last night was a doozy, at 3:00 AM, we got up to check her levels again since they were 180 (a great level) when she went to sleep at 9:00 (the new schedule is a little hectic right now while we try to balance meals out - poor kid was happy to be up at 9:30 but she's got be exhausted). Her levels hit 67 when we checked at 3:00, we gave her some juice, checked again, back to 170....so we were going to head back to sleep for a few hours. Unfortunately our dog had thrown up in our bed.
Sometimes, you just can't win ;-)
So today....we woke up this morning grouchy, I was snapping that I had to get to work, poor Marisa just wanted a shower to try and wake up, just looking like a very bad day. We got into Mia's room, woke the sleepy head up to get her test, low again, so we gave her another 4 oz of juice. Then it happened. In the middle of my grumbling, my wife just doing the best she can to keep everything together and ignore her husband's rotten mood, and our daughter in my arms sipping her OJ to bring her levels back up.
She flashed this smile, had a little giggle. The smiles kept coming. The points objects in the room and the identification of those objects, a mixture of real words and Mia-nese, filled the room. The OJ was apparently delicious. And both her parents were here. It was morning. It was a beautiful day. And the smiles just kept coming.
And then I realized something incredibly powerful - it's going to be a great day today. A beautiful day. My little 16 month old daughter, with everything that she is going through, pointed it out this morning with something so simple as a few laughs, a lot of grins, and some singing and dancing when the dishwasher went on this morning.. These bumps in the road don't change where we are or where we're going - just how we're going to get there. It's a beautiful day because I have her, I have my my wife, we all have eachother, we are starting to understand what we are facing, and we're going to face it together.
Who would have thought this little person that I love so much could already teach her Dad how we're going to get through all this?
That's it for now - in the coming weeks look for new acronyms, terminology, calculations, and so on. We've got a lot to figure out, and as you can tell I'm still an amatuer, but hey, we're only 48 hours into this right now. We'll get there.
Our little sweet and silly 16 month old hadn't been herself lately. Cranky, upset, just needed to be held. This is okay, Dad and Mom are both softies and don't complain about extra hugs when they can get them. But this was troublesome from this normally very energetic little girl. She had been very thirsty, and diapers were wet to the point that they would leak. We didn't think much of it, Florida gets dry in the winter, and we were happy that she was drinking more water, but the moods were concerning.
My incredible wife, ever the great mother, mentioned these concerns at Mia's 16 month checkup with her pediatrician. After a few tests, it became apparent that these concerns were legitimate - Mia had a blood sugar reading of 550 (a normal toddler should be between 100-200). Type 1 Diabetes.
After coming home to grab me, we spent the afternoon in the doctors office at the local childrens hospital, trying to learn all we could, and how our daily routine had changed. Two days later we're still learning.
There have been ups and downs, both in blood glucose levels and in moods (mostly the parent's moods). Mia's levels have ranged from 67 to 540 since then, while we try to work with our doctors to balance the insulin dose with the right amount of carbohydrates. There's no cheating on this diet...
Marisa's brother Corey as been our life-line during the last 48 hours. He's been living with Type 1 diabetes for 10 years now. He's been on speed dial the last couple of days, has been calling to check in on us, and has given us such great advice and is such a great calming influence. I honestly do not know how we could have gotten through this adjustment without him, and I know we're going to continue to rely on his strength, expertise, and love for Mia to geth through this.
Insurance has been another interesting adventure. Even with very good coverage, we anticipate our costs to be over $300/month at this point for all of her supplies. The doctors gave us a prescription for a lancer/tester combination that was not covered by our insurance company, leaving good old Dad making phone calls from the Walgreens parking lot to figure out what is covered. It's heartbreaking to think of families without insurance who have to go through this, even to think of those with insurance that have to navigate this maze. No offense to our doctors, but in the information age we live in, how hard would it be to give a prescription that is actually covered by the provider? Unbelievable.
Mia's low readings generally come in the middle of the night or early in the morning - 64 to 67. Last night was a doozy, at 3:00 AM, we got up to check her levels again since they were 180 (a great level) when she went to sleep at 9:00 (the new schedule is a little hectic right now while we try to balance meals out - poor kid was happy to be up at 9:30 but she's got be exhausted). Her levels hit 67 when we checked at 3:00, we gave her some juice, checked again, back to 170....so we were going to head back to sleep for a few hours. Unfortunately our dog had thrown up in our bed.
Sometimes, you just can't win ;-)
So today....we woke up this morning grouchy, I was snapping that I had to get to work, poor Marisa just wanted a shower to try and wake up, just looking like a very bad day. We got into Mia's room, woke the sleepy head up to get her test, low again, so we gave her another 4 oz of juice. Then it happened. In the middle of my grumbling, my wife just doing the best she can to keep everything together and ignore her husband's rotten mood, and our daughter in my arms sipping her OJ to bring her levels back up.
She flashed this smile, had a little giggle. The smiles kept coming. The points objects in the room and the identification of those objects, a mixture of real words and Mia-nese, filled the room. The OJ was apparently delicious. And both her parents were here. It was morning. It was a beautiful day. And the smiles just kept coming.
And then I realized something incredibly powerful - it's going to be a great day today. A beautiful day. My little 16 month old daughter, with everything that she is going through, pointed it out this morning with something so simple as a few laughs, a lot of grins, and some singing and dancing when the dishwasher went on this morning.. These bumps in the road don't change where we are or where we're going - just how we're going to get there. It's a beautiful day because I have her, I have my my wife, we all have eachother, we are starting to understand what we are facing, and we're going to face it together.
Who would have thought this little person that I love so much could already teach her Dad how we're going to get through all this?
That's it for now - in the coming weeks look for new acronyms, terminology, calculations, and so on. We've got a lot to figure out, and as you can tell I'm still an amatuer, but hey, we're only 48 hours into this right now. We'll get there.
Wednesday, December 3, 2008
Type 1 Daughter
First off, let me say this. My daughter will not be a statistic, categorized, put into a slim margin of a demographic.
She's a fighter, the sweetest kid I've ever seen, and absolutely gorgeous.
This blog is an outlet for our family as we go through her balancing act with Type 1 diabetes. Somewhere for us to put our emotions.
So I guess I'm saying, don't let the title of the blog fool you - this kid is going to thrive and be a kid.
She's a fighter, the sweetest kid I've ever seen, and absolutely gorgeous.
This blog is an outlet for our family as we go through her balancing act with Type 1 diabetes. Somewhere for us to put our emotions.
So I guess I'm saying, don't let the title of the blog fool you - this kid is going to thrive and be a kid.
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