I was inspired by Katy (I love her blog - check it out if you haven't done so already) over at bigfootchildhavediabetes.com to try out a new cookie recipe:
Preheat oven to 350F. Line baking sheet w/parchment paper. In large bowl, mix dry ingredients. In small bowl, mix wet ingredients. Stir wet into dry. Let it sit for about 5 minutes.
Scoop onto cookie sheet. As always, I use my pampered chef scoop so every cookie is the exact same size = exact same carb count. I also smooshed them down a bit since they don't spread.
Bake for 15 minutes.
Consume for breakfast.
Or lunch. Or snack. Or dinner. Or really whenever because these are so darned good.
Total Carb Count = 362. I made 26 BIG cookies using the big pampered chef scoop so each cookie = 14 CHO. My kids thought it was a blast to eat cookies & strawberries for breakfast.
I struggled with the decision to enroll Livie in TrialNet
I mean, I already knew that she had an increased risk of getting T1D by the mere fact that she's related to someone who has it. Did I really want to know if she was in an even higher risk category? And if she did test positive, then what?
On the other hand, my work is clinical research. I belive in clinical research. And if participating in TrialNet could help figure out, down the road, how to predict and prevent this stupid disease, then how could we not participate?
And really, WHAT ARE THE STINKIN' ODDS?
So we did.
Mom
Dad
Livie
I didn't hear anything for a while. I kind of forgot about it. And then Monday morning I got the phone call.
I'm negative. Clay's negative.
Livie's positive for 3 out of 4 autoantibodies
They don't have the results on the 5th one yet, but really, does it even matter?
And she's not just positive, she's high for ICA, ICA512 and MIAA.
I guess MIAA's the big one. It automatically qualifes her to take part in an oral insulin study.
I emailed my endo and asked him to give it to me straight: Do I proceed with the A1C and Oral Glucose Tolerance Test thinking IF or WHEN?
And he responded back with a bunch of jargon...blah, blah, I don't know the exact percentages, blah, blah, but having multiple certainly increases your odds, blah, blah. And then, finally:
However, in straight talk, I'd say you should expect that, at some point, Livie will manifest IDDM.
I knew the answer before I even asked it. But I needed someone to just give it to me straight.
So how am I?
Honestly, my heart is breaking. Not for me, but for Livie.
I'm not quite back to where I was when Ella was diagnosed, but I felt the joy that had just returned to me leave a little bit. I don't smile as easily. I'm prone to tears. I don't really want to talk or make merry or laugh or make light conversation.
I know I'll get through this - we'll get through this. Whether she gets it or whether, by some miracle or twist or fate, she never does. We'll get through it. And I'll laugh again and the joy will return again.
When Ella was first diagnosed, I was afraid to leave the house. It's a lot like having a newborn again where simple things like going to the grocery store or to a friend's house for a playdate suddenly become complex, daunting and a little scary. I remember asking a friend:
How am I ever going to take her to Disneyland?
How will we do trips to the lake?
How will we do overnight hotel stays somewhere?
How am I ever going to handle taking her on an airplane ride?
How do I take her on road trips?
And her answer was:
You'll figure it out.
I know from having a newborn that the "firsts" are always the scariest. The first bath. The first car ride home. The first time they sleep in their own room. The first trip to Target. And once you finally do something for the first time you realize it wasn't so bad, the second time is usually much easier and you gain a sense of confidence that you CAN do this. I figured diabetes had to be the same way and so I set out trying to get as many "firsts" out of the way as quickly as possible. Thus was born our
Screw You, DiabetesSummero'Fun
Some of these "firsts" technically occurred pre-Summer, but Spring & Summer o'Fun just doesn't have the same ring to it.
First trip to the Zoo
First weekend away from home in a hotel
First Birthday Party
First trip to the Lake Mohave house (long car ride - check!)
First trip to the Fair (includes first corn dog, cotton candy, swirly ice cream cone and gooey cinnamon roll - holy insulin dose!)
First trip to Bass Lake
Has it all been perfect? Heck no! I've seen some crazy high and low blood sugars. We've had canulas pop out in the middle of the airport (first time bolusing for basal in the Orlando airport!), we've had pods fall off at the most inconvenient of times (mid-dinner dose...ummm...how much insulin do you think she got? half? some? all? none?)
But you know what? We had a BLAST. And Ella will never look back on her first summer with diabetes and say that diabetes held us back from one moment of fun. And I can confidently say that I know that I can do this. It's not as easy as it once was. It takes a lot more planning and there is a bit more worry involved but it has not, and I will not allow it, to take a moment of joy away.
The lemon tree is full of lemons that never get used...one family can only use so many lemons.
The girls think it's great fun to pick the lemons, clean & squeeze them.
I think this is great fun because it keeps them occupied for at least an hour.
Picking, Cleaning, Drying, Piling, Juicing.
And since one family can only drink so much lemon juice, we almost always end up having a lemonade stand.
This particular day, we packed up our lemons, squeezer and Splenda and headed over to Ella's Best-Friend-Forever's house to peddle our lemonade. We decided that since the lemons were home-grown we could market it as "Organic"
How could you NOT buy a glass from these cuties??
and since it was made with Splenda, the carbs were nominal so the girls came up with this little catchy jingle (while waving pom-poms):
Get your lemonade! It's delectable, delicious and diabetic friendly!
Apparently the jingle was a smashing success because the girls sold $8 worth of lemonade in about an hour including 3 glasses to the local firemen.
(Domestic Divo may or may not have received a call from his wife alerting him to the cuteness happening in his sector)
Watching the girls with their lemonade stand reminded me of the following 3 things:
1. Childhood is too short. There will be a time when picking, cleaning, drying, piling, rinsing and juicing lemons is no longer considered fun. There will be a time when she will be too cool to stand on the sidewalk in a bathing suit with pink pom-poms doing cartwheels and singing silly jingles. I need to cherish these moments.
2. If you don't have time to stop and buy a glass of lemonade from the local neighborhood kids, you are too busy...and probably miserable.
Most people I chat with think the worst part about my kiddo having diabetes is dealing with the pokes.
Oh - she has diabetes? But she's so young. Poor thing. Wow - I don't know how you do it...my kid hates shots.
There are a MILLION things I could say in response to this but I'm trying to stick to the subject here so I'll stay on task.
For me, the worst part about diabetes is not the shots or the pokes or the lack of sleep or the massive amounts of medical supplies that have taken over both my bathroom cabinet space and my purse.
My worst part is that even if I follow all the dosing rules and calculate her carbs down to the gnat's ass, I still have no clue what the ultimate result is going to be. There are times when I have fed her chicken and green beans and she's in the 200's and then I feed her a cherry icee, corn dog and cinnamon roll from the fair and she's 130. Go figure.
I cannot tell you how often I think, "I wonder what her BG is right now." I restrain myself on a daily basis from poking her precious little digits every hour...and not necessarily because I'm worried that she's high or low but just because I have this need to KNOW and CONTROL.
(I'm Type A if you haven't figured this out already)
I truly believe if left unchecked, I would require some form of intervention for CBSC (chronic blood sugar checking). And while a week at a rehab clinic in Malibu hangin' with Lindsay Lohan or Amber from MTV's show Teen Mom sounds fantastic right now, I just don't have the time.
Today was the day we slapped the GCM on Ella. She was so excited. I think she was mostly excited about the new hot pink SPIbelt I got her to wear Dexa in (Dexa = Ella's name for the Dexcom receiver...it's a girl, of course). She thought the SPIbelt was super cool. I think it's pretty cool, too. Like a cool fanny pack (who knew this existed?). I might order one up for myself. Cuz I'm cool like dat...I'm cool like dat...
The insertion went so much better than expected.
That was it? I didn't even feel it!
And then I had to wait 2 hours to enter the calibration blood sugars to get Dexa going. This was torture...like waking up early on Christmas morning to see all the presents under the tree but you have to wait for your Mom to take a shower and put on make-up so she looks pretty for the photos. And just when I think I can't take it anymore...
MOM! Dexa fuzzed against my stomach!
(Ella speak for Dexa is vibrating to alert us that it's time)
I've never been so excited to do a finger poke in my life. 2 in a row, enter into Dexa and watch the magic.
84...is it 84 going up or 84 going down? Oh, Trend Arrow - how long will you take? Again with the waiting!!! And just when I thought I would burst at the seams with anticipation...
There she was. That beautiful trend arrow.
Dexa was pretty much spot-on all day long with her blood sugar readings and I was in blood sugar data heaven. Until 8:00 at night when Dexa was reading her 2 hours post dinner at a steady 145 (completely reasonable after 30 carbs of pizza for dinner) and Ella said, "Mom - I feel low."
A quick blood check confirmed Ella at 88.
Oh, Dexa - why must you disappoint me so in our first 24 hours of knowing each other? I know, I know - patience, Krissy, patience. She's only 6 hours old! Ella and Dexa are still getting to know each other...still workin' things out...
Patience is a virtue, but it's just not one of mine.
So I re-calibrated Dexa, tossed Ella 3 cups o' popcorn and 2 hours later she was 122 per Dexa, 128 per Accu-check Aviva.
Dexa + Ella = the beginning of a long, wonderful friendship...provided Dexa remains Cool Like Dat.
Sleep in heavenly peace, my sweet Ella.
Disclaimer: I am most definitely not as Cool Like Dat as Dese Cool Cats:
I love the food. I love the rides. I love the feeling of being a kid again.
Every year when the fair comes to town,
I obnoxiously sing The Templeton & Goose Song from Charlotte's Web - At the Fair
The fair is a fairitable smorgasbord...orgisborgd..orgisbord...
It drives Domestic Divo nuts.
This year, Bret Michaels was playing at our little old county fair.
Bret Michaels was diagnosed with T1D when he was 6.
I am part of an amazing group of local T1D families and us Mommas decided we were going to see if we could get Bret Michaels to meet with our kids. After numerous emails, we finally heard back...
Ella & Bret - T1Ds Stick Together!
We didn't have a lot of time with him, but he was so nice and told our kids to stay healthy and to keep their blood sugar in good control.
He said that he works really hard at it and that they are all in it together and that diabetes will never hold them back!
Pretty cool, right? I mean, I remember rockin' out to Poison in Jr High at 6th grade sleep-overs! Every Rose Has Its Thorn!
But if you were to ask Ella her personal favorite moments of the evening, she would tell you:
1. Eating Cotton Candy for the first time since diagnosis
2. Winning a gold fish
3. Eating a swirly cone
4. Downing a Quick Stick because Momma seriously over-estimated the carb count on that swirly cone!
I love not having to rush the kids off to school in the morning.
I love wearing tank tops.
I love spending long, lazy days lounging in the pool.
I love spending nights around the fire pit in the backyard with my family.
And I love making the perfect S'more.
After Ella was diagnosed, I went a little...crazy. Mental, looney-tunes, cuckoo, bonkers...yup, they all fit. And rightfully so, I say. In a grief-stricken rage, I went through my house and rid the place of anything and everything that was packaged, made with white flour or contained sugar.
Mother Hubbard, the Cupboards were bare.
As I started coming out of my diagnosis delirium, I slowly started allowing these previously forbidden items back into the house...but we had yet to invite back marshmallows until one beautiful summer night last week when Ella asked:
Mom: Can we make S'mores?
And I thought, "Why the heck not?" I was feeling daring. Like...yeah...I got this...
Domestic Divo hit the store and came home with fresh graham crackers, Hershey's chocolate and big, fat, soft, fresh marshmallows - Jet-Puffed..America's Favorite. We figured out the carbs for each S'more ingredient and let Ella have at it. Usually I'm a real stickler when it comes to stuff like this, but like I said, I was feeling adventurous.
Admission: I am a S'mores snob.
I like my marshmallows to be lightly brown on all sides - if it catches fire or gets any hint of dark brown, I toss it and start over.
I also like my chocolate to be slightly melted so while I am diligently turning and toasting my marshmallow over the flames, I rest my chocolate on the graham cracker near the fire in order to get it nice and warm and melty.
So there I was - feeling on top of the world. My kid had been dosed up for 48 carbs of fast-acting sugary goodness, my marshmallow was browned to perfection and my chocolate was at the perfect stage of meltiness.
As I bent down to pull my cracker/chocolate from the fire, the wind shifted and the flames literally shot up in my face.
WOAH - You OK?
asked Domestic Divo
(henceforth referred to as DDVO)
I immediately smelled burnt hair.
But I could still see, so I took that as a good sign.
Me: I think I burnt my eyelashes off!
DDVO: Lemme see...uhhh,yeah...and some of your eyebrows, too
Me: Crap - are they gonna grow back?
DDVO: Oh, sure....yeah....sure....uh-huh.
Feeling satisfied that my ridiculously short eyelashes and half-burnt eyebrows were a temporary nuisance
(I did not take DDVO's word for it - googled it),
I resumed my S'more activities and I think the results were well worth a few lost lashes.
And 2 hours post massive marshmallow & S'more consumption, Ella's BG was 94.
BOOYAH!
Where you at, Diabetes?
Yeah, Take THAT.
I mean, really, who needs eyelashes anyhow?
Diabetes has requested a re-match this upcoming Saturday at a birthday party where it will hit me with ice cream sundaes, candy necklaces and cotton candy...
all of which I have not yet conquered post diagnosis.
