Saturday, December 31, 2011
As a parent of a child with type 1 diabetes, I often can't help but long for a time and place when diabetes didn't affect our lives. The simpler times without the constant blood sugar checks and worries.
But I snap myself out of that and instead remind myself of how lucky we are, how we have the power to make a difference.
Here's to never giving up, and to always looking forward. And to remembering that HOPE is a powerful thing, and that with enough perseverance we will return to a place and time without type 1.
Happy 2012!! Check out the video link above!!
Friday, December 30, 2011
Thumbprint cookies are my absolute favorite, and I have to say these lived up to my expectations. Recipe is from food.com and vanilla buttercream from food network. Yum.
1/4 cup sugar
1 cup butter
2 cups flour
1 teaspoon vanilla
1/2 cup chopped pecans
1/4 teaspoon salt
Mix all ingredients together. Roll into balls and indent with thumbprint, without breaking through the dough. Bake at 300 degrees for 20-25 minutes. Let cool completely and fill with icing.
Quick Vanilla Buttercream (half batch)
1 1/2 cups powdered sugar
1/2 cup butter
1/2 teaspoon vanilla extract
2 tablespoons whipping cream
Mix butter and powdered sugar on low for 1 minute, increase to medium for 3 minutes. Add vanilla and whipping cream, and beat 1 minute more. Divide and add food coloring, if desired.
Thursday, December 29, 2011
Saturday, December 17, 2011
Wednesday, December 7, 2011
Thankfully, it wasn't because leah was unconscious...but a nasty stomach bug, ketones, and blood sugars well below 80 left us no other option.
But when the puking started again the next night, I figured we were headed to the hospital for sure. Luckily, zofran helped her keep some juice down, we made it through one more night, and finally today has been good.
A nice reminder of the fun that winter and flu season brings. It's funny what becomes your reality--staring at the glucagon, syringes, empty juice boxes, making 3am phone calls to the endo...you just kind of go into autopilot, do what you need to do, and hope beyond hope you're making all the right decisions.
Thursday, December 1, 2011
Saturday, November 5, 2011
|Leah enjoying herself along the walk route.|
|The D-moms I'm so thankful to have in my life|
|Miles of smiles, fun, and HOPE!!|
Friday, October 21, 2011
Thursday, October 6, 2011
Just ran a slow, easy 2 miles to get some nerves out. The stars were bright, the air was nice, and Lady Gaga was pushing me along in my earbuds!
I saw this great quote this morning from the late, great Steve Jobs....
"You can't connect the dots looking forward; you can only connect them looking backwards. So you have to trust that the dots will somehow connect in your future. You have to trust in something -- your gut, destiny, life, karma, whatever. This approach has never let me down, and it has made all the difference in my life."
I feel ready. Looking back over the past 6 months, I know I've put in the work and I'm ready to prove to myself that I can do this! Now it's just a matter of getting through the next few days without being a nervous wreck.
Saturday, October 1, 2011
Thursday, September 29, 2011
Each training run this week gets me one step closer, and I decided last night at 10:30pm to go outside and get my 5 mile run over with. What's the difference between that time of night and 5am, right?
But before I could go outside I heard Leah's pump beeping low...85....not too bad, and we haven't really had unexpected lows popping up at night lately, so after giving her half a juice box I ventured out for my run.
It was a beautiful night. There seemed to be a million stars in the sky, the air was cool and crisp, and the darkness is always sort of comforting to me while I'm running. It was a nice chance to get out and clear my head after a long day, and I knew when I was finished I could just go home, go to bed, and sleep a little longer in the morning.
Wrong. As soon as I walked in, I heard the pump again. (My sleeping husband hadn't heard it yet). 65 this time. Another juice box. I stayed up awhile to keep an eye on things.
1:00 a.m. rolls around and she's low again. Another juice box. Suspended the pump so she wasn't getting any insulin. Tried to get to sleep, which of course is next to impossible when your child is in the next room teetering on the verge of dangerously low blood sugars.
I've often thought about the similarities between long distance running and diabetes. They are both physically demanding and take a tremendous positive mental attitude to get through. But the running is just plain easy compared to the day to day crap that diabetes dishes out. On marathon day, my body will hurt at the 20 mile marker, I'll somehow make myself keep running through the pain, and then it will be over.
Diabetes will not go away. Leah will need to endure for years and years to come. She'll need an attitude that keeps her going, even when her body is beat up from injections and site changes, and her mind just tells her to quit. Her 26.2 miles is the course of her life with type 1 diabetes, and it's definitely a marathon, not a sprint.
|Leah and her brother at a Kids Fun Run this summer.|
Wednesday, September 21, 2011
But the thing that always really amazes me is Leah's composure....just sucking in her breath, waiting for the needle to go in, and letting out a big exhale when it's over.
Tonight she was describing how it didn't hurt too bad, and that it seems to have gotten better over time. She said "That's how it works I guess, that it just keeps getting less painful, so maybe when I'm older they'll invent something that doesn't hurt as much at all."
Then she paused and said, "Well, actually, I hope I don't have to do this for the rest of my life. Maybe I won't have diabetes forever if there's a cure."
Hope is a powerful thing. I hope she's right!!
Monday, September 19, 2011
Friday, September 9, 2011
On a related note, I saw a quote by Dr. Faustman today that said when it comes to diabetes she still hears people say "I know someone with type 1 diabetes, and they're fine," and that it's important to educate and clear up misconceptions about this disease.
As parents we hear this all the time. We're told by people that we're lucky it's not something worse. That they know someone who "got diabetes as a kid and now they're grown up and fine."
But it's not fine. 10 fingers pricks a day is not fine. Multiple injections a day is not fine. Being hooked up to multiple devices each day is not fine. And that's just the physical stuff.
What about the anxiety at school Leah has if she's late to lunch after her check in the office. The sleepover she can't go to, or the interruptions at a birthday party or a playdate. The tears after someone notices she's "different" (in their eyes). The carb counting and limitations.
There's the never-ending fear of the unthinkable happening at night. Or the complications that can come as a result of living with this disease, even when you're working your butt off every day to try to get it right. None of it is fine.
Fundraising can be hard. It takes a lot of energy and time, and it's difficult to get the point across of what this disease really means for our kids. But it's worth it.
I will never be "fine" with diabetes. We know everyone has hardships in life and we count our blessings every day. But diabetes is awful, relentless, and it takes far too many lives. It needs to go away. And our kids deserve every penny we can raise, every amount of effort it takes to make that happen. Then things will be fine.
Thursday, September 1, 2011
Today, Angie and Trevor at marathontrainingacademy.com are sharing info about our event! I've been following their training plan for my first marathon in about 6 weeks (yikes!) and their information is invaluable for any runner, no matter what your goal is.
Leah's life is a huge motivation for my running, and her grin was ear to ear as she heard our story being shared on their podcast.
If you click on the link below, you can scroll down and see where they mention our event in the blog comments. Also, just click on "play" on the podcast button and you'll hear about us within the first few minutes.
Register for Miles of Hope by following this link. You can participate and donate in many ways, and help us get one step closer to imagining a life without type 1 diabetes.
Monday, August 29, 2011
Thursday, August 18, 2011
Tuesday, August 16, 2011
The last few years, we've done a walk to raise money for diabetes research. Leah looks forward to it, and it feels good to help make a difference.
This year we decided to switch it up a bit. We're still doing a walk, but we're doing our OWN walk! There are about a dozen families in the small community I live in that have children with Type 1, and on October 22, 2011 we are coming together for our own event and donating the proceeds to The Faustman Lab.
The cool part is, this walk is not just a local event....it's also a VIRTUAL WALK, meaning ANYONE can participate by donating and dedicating their walk or run for the day to the cause. We want to reach as many people as possible while raising awareness for our kids and helping to cure this disease.
Visit the Miles of Hope registration page to register, donate, and participate. We know it will make a difference!!
Monday, August 8, 2011
The first year, it was because she had just turned 5, was newly diagnosed, and the thought of leaving her ANYWHERE, even with medical professionals, felt overwhelming and scary.
The next year, she was a little older, on a pump and a little more independent, and seeing her more comfortable with things of course felt like she was growing up too fast.
This year, her crazy 4 year old brother gets to go too...and seeing them enjoy it together brought all the waterworks back one more time.
Of course, there is also the reminder that we're here BECAUSE of diabetes, and really I would like it to go away.
But that reminder will be overshadowed by the fun they'll have while not needing to be checked on by me. And the fact that she's safe because of highly trained counselors and volunteers. And the fact that she gets to see all kinds of kids going through the exact same things as her.
For that, I am very, very grateful.
Friday, August 5, 2011
Day one rolled around and she had a great time. As I dropped her off (it's a three hour camp and I was staying close by to handle blood sugar issues) I sort of explained a few things to the bewildered-looking instructors. I really didn't say much, actually, other than "here's my phone number, call me if she's beeping." I left a juice box just in case, but knew I could be there in minute if they needed me.
Of course, less than an hour into things she was beeping. It had to be right in the middle of the yoga portion too--you know, when a bunch of 6 and 7 year olds are supposed to be meditating. They called me, I corrected the 250 blood sugar, and popped back in for snack time a little while later.
Day two rolls around. Same exact breakfast. Same exact scenario. However, when they called and said "She's beeping," (at roughly the same time) I tested and she was....50. Ahh, thanks diabetes for never working the same way twice.
The rest of the week she was consistently low mid-morning no matter what changes I made, so we'll keep working at it. It's a nice reminder for what's to come as school rolls around in the next few weeks. The nerves, the new schedule, the changes day to day.
Maybe we'll just try her new yoga meditation to calm those blood sugars right down... :)
Saturday, July 30, 2011
Getting up at 4am and leaving the house at 4:30...pretty tough.
Watching the sun rise and feeling a nice breeze through the air...pretty nice.
Walking in with a sense of accomplishment after a 12 mile run and seeing this cute face...the best thing ever. :)
Wednesday, July 27, 2011
This is kind of how our summer has been...very unpredictable and not making sense, no real patterns because of the varied activity, weather, and foods. I'm looking forward to the routine of going back to school.
When we were up for the day I saw this on facebook, and it totally hit home. It describes the need for approval of technology that's already developed but not in use in the US, like the Medtronic Veo. Having a pump that would shut off during hypoglycemic events, especially in the middle of the night, would be peace of mind times 10. At the very least I would know insulin delivery would stop if it took me 20 minutes to hear her Low Predicted alarm--which happens from time to time since the alarms are not at all loud enough.
And that's of course only the beginning....there's multiple pumps, CGM home screens, and new sensor insertion devices (just to name a few) that we've all been told are just "awaiting approval."
Of course, in the meantime we just have to make the most of the tools we have, and be grateful for the many strides technology has made in managing diabetes. No new product will make type 1 diabetes go away, or even make it easy. But helping avoid the more dangerous situations would be nice.
I'm tired today, and a little bitter that our kids have to wait for this stuff, knowing it could be better.
Saturday, July 23, 2011
Not a good thing when 2 miles into a 15 mile run I'd really like to quit. Pretty sure I've never sweat so much in my life.
It's runs like these when I have to really find some mental motivation to keep going. It can be tough when it's nothing but me and my thoughts for 2-3 hours of pounding the pavement. But usually my thoughts end up turning to Leah, and the things she faces on a daily basis.
Last weekend, after playing outside in the heat and being disconnected from her pump for awhile we got a "high--over 600" reading on her meter. She didn't feel good and fought me pretty hard as I had to jab the syringe in her arm, followed by a site change, a check for ketones and a tummy ache.
A few weeks ago we had a bad sensor insertion (a horribly large dagger-like needle) that didn't go in all the way and was left half-in and half-out as she stood screaming until we could pull it out and fix it.
The nasty rashes she seems to be getting from adhesives and bubbles of insulin pooling under her skin this summer. Her reaction being "Mom, this is grossing me out."
All the fun behind-the-scenes stuff no one sees or knows she endures.
So all in all, when my knees are aching and my mind keeps telling me to stop, I need to remember that it's temporary, that I'll reach the finish. Diabetes will still be around for Leah everyday. She doesn't get to quit, so I'll try not to either.
Sent from my iPhone
Thursday, July 14, 2011
Leah popped her head out of the water during swimming lessons to let me know she was feeling low.
3...2...1...and the meter read 35.
It's those moments that I feel like I can't get the juice box open fast enough, that a few seconds takes what seems like an hour as your heart drops to your stomach.
A juice box and glucose tab later, she wanted to get right back in and swim. Every time she went under water and took longer than the other kids to come up I felt sick to my stomach.
Its times like this I think...what if she hadn't felt it? How low can you possibly go without a horrible outcome?
I hope we never know the answers to those questions. I hope we can catch them every time before that ever happens. I hope someone cures this stupid disease.
Monday, July 11, 2011
1 cup water
2 tablespoons water
2 tablespoons olive oil
1 1/2 cups all purpose flour
1 1/2 cups whole wheat flour
1 teaspoon sugar
1 teaspoon salt
2 1/2 teaspoons yeast
Add all ingredients to bread machine and choose Dough setting. Roll out and top with your favorite ingredients. Bake at 400 degrees for about 20 minutes or until cooked through.
Or use a pizza peel to grill on both sides (usually just a few minutes on each side) until lightly crispy. Then add your favorite toppings and broil in the oven until cheese is melted--grilled is our favorite!
Total carbs in dough is 282.
Sunday, July 10, 2011
|Famous Music venues|
|The Parthenon at Centennial Park|
|10k on the Fourth|
|Happy 4th of July!|
|House in the mountains|
|Swimming and sun|
Thursday, June 30, 2011
Over the last few months we've had some sitters willing to give it a shot, and it's mostly been a positive experience. But it's always a bit awkward when you hear yourself trying to explain diabetes-related things to a person that really has no previous understanding of it. Some things that must make these new people go "huh??"...
1. A million phone numbers to call in the event of an emergency.
I think I've listed me, Ed, my brother, our neighbor, a friend with a Type 1 child, and a friend who's a nurse practitioner just to name a few. Overkill?
2. Our address at the top of the instructions page in BIG letters in case they need to call an ambulance.
This is the biggee. It usually goes something like this.. "umm, yeah, so if Leah were to be unconcious or having a seizure or something and you can't get her to eat or drink anything, you should take out this vial, insert the liquid, shake it up, draw it back up into the syringe, and give her a shot anywhere on her body. Ok? But don't worry, that should never happen." Yikes.
6. The crazy long cord from our bedroom to Leah's bedroom that connects the microphone in her room to the speakers in our room.
While showing her the kids' rooms and upstairs, I realized it must look pretty silly to have a microphone set up and a cord stretching all the way down the hall...we obviously would prefer NOT to do this, but it's the only way to hear that silly sensor alarm (WHY don't they make that louder??). We must look paranoid and ridiculous, but it's for the sole purpose of getting more sleep at night.
7. The "freebie" drawer.
Sometimes I don't like to give too much insulin when I know one of us won't be around for a little while. And depending on the sitter, I don't want them to deal with watching Leah operate her pump since it probably looks like Greek to them. So I'll stock a drawer full of free stuff--cheese sticks, turkey roll ups, nuts, sugar free jello, carrots, etc. But I'm sure it looks weird that we seem to only let our kids eat the same things over and over. It's just circumstantial, but they don't know that.
9. Good questions, with a million different answers.
I've had some good questions from sitters, such as "Isn't it dangerous to leave her too high?" The short answer is no, because I'm not gone for that long and it will be ok to deal with when I get home. But of course, the long answer is "Yes, prolonged high blood sugar or extremely high blood sugar is dangerous." Always confusing.
10. And the final reason that babysitters must think we're a bit loony.....because we probably are.
Diabetes tends to drive you a
When the kids find out we're getting a babysitter, they literally can't push us out the door fast enough. So it might mean a million phone calls, and only an hour or two of getting out of the house, but it's good for them, too.
Friday, June 24, 2011
Thursday, June 23, 2011
Wednesday, June 22, 2011
Tastes like a yummy hot ham and cheese sandwich!
Bobby Flay's Pizza Dough Recipe (makes two 14 inch crusts)
- 3 1/2 to 4 cups bread flour, plus more for rolling (Chef's Note: Using bread flour will give you a much crisper crust. If you can't find bread flour, you can substitute it with all-purpose flour which will give you a chewier crust.)
- 1 teaspoon sugar
- 1 envelope instant dry yeast
- 2 teaspoons kosher salt
- 1 1/2 cups water, 110 degrees F
- 2 tablespoons olive oil, plus 2 teaspoons
Tuesday, June 21, 2011
pepper to taste
a few fresh basil leaves
Friday, June 17, 2011
Cute things overheard between the two of them throughout the week....
While on the swings together and bolusing on their pump for the popsicle they just ate...
"Cool! How much did it give YOU?"
Discussing fast acting carbohydrates....
"Chalk would taste bad if you ate it."
"Glucose tabs taste kind of like chalk. But they're yummy!"
Swapping hospital stories... (yes, kind of sad but hopefully therapeutic!)
"Being in the hospital wasn't too bad....I had an IV."
"I got this stuffed animal while I was there."
"I got one too!"
Checking blood sugar before lunch, when one kid was 154 and one was 161....
"Hey we're almost the same number!!"
I think it's good for both of them to hang out and see another kid doing all the diabetes stuff they have to do. They test at the same time, discuss their favorite pump site locations, compare their favorite freebie snacks, and both wear cool camo SPIbelts. It's not fair they both got a bum pancreas, but I'm thankful they've gotten to know each other and don't feel so alone.
Thursday, June 9, 2011
1 cup almond butter (you could also use peanut butter, I'm just kind of obsessed with the yumminess of almond butter lately)
1/2 cup agave nectar
1 cup unsweetened, shredded coconut
1/2 cup wheat germ
2 cups old fashioned oatmeal
1/2 teaspoon cinnamon
pinch of salt
Mix almond butter and agave in mixer on high speed. This will get thick after 2-3 minutes. You want it to be somewhere in between the consistency of peanut butter and the inside of a peanut butter cup.
Mix all dry ingredients together and add almond butter mixture to it. It will be too thick to mix with a spoon--just get your hands in there and work the oatmeal mixture into the almond butter mixture until it's crumbly and even distributed.
Dump into a 9 x 13 pan and bake at 350 degrees for 30 minutes, stirring every 10 minutes. If the edges start to get too dark, stir every 5 minutes until slightly crunchy and toasty. Be careful not to overbake! (It will get crunchier as it cools off, too).
I weighed mine into 15 individual baggies to make 20 carbs per baggy. We'll add some dried fruit and maybe some more nuts for a snack, or just eat it like it is!