Wicked Sweet

Weekend Meme

2011-07-16T14:08:00.005-04:00

It's Saturday, and we have nothing on the calendar. NOTHING! Nowhere to be, no one expecting us, no schedule to race to keep up with. So I find myself browsing the DOC, and I came across an old post from Hannah over at Dorkabetic. She put together this fun little alphabet meme, which I hope she doesn't mind that I've stolen.

Happy Lazy Summer Saturday!

Age: 41

Bed size: King. Don't understand how married couples can sleep in anything but.

Chore you dislike: Dusting. It just gets dusty again, so why bother?

Dogs: Love them. Grew up with Max, a smart poodle mix, then had Beau, a stupid lab mix. Got Molly before Grace was born and she died last fall. No dog now, but will probably get another one some day.

Essential start to your day: I'm a snuggler, so some snuggles from hubby are a must.

Favorite color: Dark blue

Gold or silver: Probably silver, but like most girls married in the 90s, my wedding band is yellow gold.

Height: 5’4", but I wear heels a lot.

Instruments you play(ed): In 5th grade I wanted to learn to play guitar but broke my thumb after two lessons, when Karen closed it in the bathroom stall door.

Job title: Instructional Assistant in a kindergarten class.

Kids: Three: Grace (future movie producer or CEO, definitely in a position to boss people around), Little Sister (future self-proclaimed movie star and Olympic swimmer), and Little Brother (future famous rock climber and race car driver).

Live: Just north of Boston.

Mom’s name: Marie Antoinette. Yes, I'm serious. (hi Mom!)

Nicknames: I grew up with my family calling me Pam Soup, or Soupie, or just plain Soup. No idea where this came from.

Overnight hospital stays: Only for my three complication free deliveries.

Pet Peeves: Food that goes to waste, the fact that my husband's phone apparently NEVER acknowledges when I call, and being called "Mrs. Dunn" by the young, cute lifeguards at the pool. Way to make a gal feel old!

Quote from a movie: "Just keep swimming!". Finding Nemo

Righty or Lefty: Southpaw

Siblings: Two older sisters and an older brother... could you guess I'm the baby?

Time you wake up: Need. More. Sleep. 6:30am on work days. As late as possible all other days.

Underwear: Yes (not sure how this was intended)

Vegetables you don’t like: Cooked green peppers... blech!

What makes you run late: I'm a procrastinator at heart. That, and deciding which shoes to wear ;)

X-Rays you’ve had: Broken thumb and finger, two separate occasions

Yummy food you make: Shrimp Scampi

Zoo animal favorite: Polar bears, though I feel really sorry for them in captivity.

Happy Weekend Everyone!

Same

2011-07-14T18:22:00.002-04:00

Grace had her quarterly endo appointment this afternoon. Things have been chugging along here... swim team, Barton camp next week, vacation the week after that. Her 90 day blood sugar average was pretty good so I expected a decent A1c. I'm EXTREMELY happy with the 6.3 result, especially since we've been able to decrease the number of lows she's had.

But the best part of the visit was while we were waiting in the play room for our appointment to begin. Grace was sitting at the craft table working on something. Next to her was a boy who looked to be either slightly older, or very tall for his age. After downloading the numbers from her pump, the nurse returned the pump to Grace and she reconnected. A few minutes later her pump chimed, to alert her that she forgot to un-suspend it. At the sound, both Grace and the boy next to her simultaneously looked to their left hips to check if it was them making the noise. The boy looked at Grace and asked who it was, because it didn't seem to be him. Grace, beet red, acknowledged it was, in fact, her.

I couldn't help but laugh... the sight of two heads moving in unison to the alert from an insulin pump was priceless.

The administrator of the play room said it happens all the time :)

Trapped

2011-07-02T22:33:00.004-04:00

I have a new favorite piece of jewelry. It's a necklace my husband gave me (after I saw it in a store and HEAVILY requested that he buy it for me;)). It's a blue circle of sea glass attached to a silver chain. Think, international symbol for diabetes. I love, love, love it.

And now I can't get it off. I put it on last week to wear with a fabulous white tank top. Apparently I linked the clasp onto a funky link, and now the clasp won't open back up.

My daughter is trapped in a life with diabetes. And now I'm trapped in a diabetes inspired necklace. Oh, the irony!

Side note: A great big THANK YOU to whoever nominated me for the Best of the Betes award! I've been woefully absent from the DOC lately, and when I checked in today, this is what I saw! I still think it's crazy that anyone out there actually reads my ramblings, but now I think I've found some inspiration to ramble on again! So thanks, and stay tuned...

Happy Birthday, Gracie!

2011-06-04T17:10:00.002-04:00

Ten years ago today, at 1:32 in the afternoon, you entered my life. You weighed 7 pounds, 14 ounces and I was petrified of you. I loved you with all my being, but didn't have the slightest idea of how to take care of you. You cried.. A LOT... and were never interested in falling asleep in my arms. But after a few months we seemed to figure each other out, and you morphed into a pretty easy baby.

I take such pride in watching you become the person you are. You are timid but fiercely independent. You try your hardest at everything you do and are a good friend. You are a rules-follower and love structure, and definitely need some alone time every day to center yourself.

And you are brave. Nothing has shown this more than how you deal with your diabetes. You get sick of it sometimes, and yell and scream and cry. But so do I. Sometimes you're embarrassed by it, but other times you wear it as a badge of courage. You seem to be developing the sense of, "diabetes is something I have to deal with, but it's NOT who I am," and I love that.

Ten years ago today I never would have guessed we'd be on this diabetes journey together. But here we are. And I am in awe of how gracefully you handle it.

I never could have guessed how absolutely perfect your name would be.

I love you.

Fallout

2011-04-30T20:36:00.002-04:00

Grace's Type 1 Diabetes diagnosis two years ago has altered the course of her life. She is not the person today that she would have been were she not diagnosed. But this is true for everyone - events happen in our lives that weave their way into the fabric of who we are.

As such, Grace's diagnosis has altered the course of everyone in my family's lives. We are all affected in some way. Lately , it seems, no one more so than Little Sister. She's struggling, and I'm not quite sure how to help her.

It started soon after dx, when we saw a sharp increase in her mood swings and temper tantrums. Little Sister has always been my "go with the flow" girl. But she began to be more of a challenge.

Then, about a month ago, she told me she was having trouble seeing the blackboard at school. With her 8 year old well visit less than a month away, and no reports of headaches or other problems with her schoolwork, I decided to wait till then to have her vision checked. Two weeks ago after a cursory vision test my pediatrician referred us to a Pediatric Optometrist at Children's Hospital.

Last Thursday was the appointment. After an extensive eye exam and administration of dilating eye spray we had to wait 20 minutes for full dilation. I was confused by some of the answers Little Sister gave during the exam, so I had her wait in another room while I talked to the doctor.

"Is she faking?" I asked. "Well, yes and no," was the answer.

Apparently, in a desperate attempt to pull some much needed attention away from her diabetic sister and baby of the family/ only boy brother, she's manifesting vision problems. Of course, that's MY take. The doctor said it seems as though she's under a lot of stress, and that's turning an extremely minor deficit in her up-close vision, one that most children would compensate for and outgrow as their eyes mature, into a far-sighted eye strain. When her eyes are tired, such as at school after reading or writing a lot, when she looks up things get blurry. When she was looking at the letters during the vision exam, at first she couldn't read any of them. After a series of different lenses were used she still couldn't see. Then all the lenses were removed and, what do you know, she mysteriously COULD see the letters.

It's all very confusing and upsetting. The doctor said it's actually quite common. The solution is we're getting her glasses to wear at school with an EXTREMELY low prescription. She'll see a slight difference, but her eyes won't become dependent on them. They're almost like a placebo. Then we go back in August for a follow-up and hope this bit if TLC has helped, and corrected the problem. We've told her that the glasses will fix the blurriness and heal her eyes so she won't have to wear them forever.

I can't help feeling like I'm failing her. She is my light, my heart, my joy, my everything, and yet I've failed to show her enough love. This stupid disease has sucked so much of my time that I've lost track of the needs of my daughter - the one without diabetes.

Little Sister is now a different person because of Grace's diagnosis. I only hope I can get her back on track quickly and help her grow into the amazing person she's destined to become.

Another First

2011-04-14T21:34:00.005-04:00

Change is hard. Especially for my rules-following, structure-loving oldest child. So when our CDE suggested we try Grace's arm for infusion sites, I had little faith she'd be on board. Up till now we've only used her bum. We tried her stomach once, but pulled it immediately because it hurt so badly. It's not that her bum is in bad shape - it's fine. It's just that as Grace gets bigger there's more real estate at her disposal. So we talked about it. I showed Grace this picture for inspiration from Wendy's blog. And she did it. Didn't even flinch. My brave girl.

Shoulds

2011-04-08T15:49:00.002-04:00

Diabetes just doesn't make sense to me.

I get that it's a condition that comes with tons of variables. But there are certain tenents that should hold true, at least most of the time.

Like this one... physical activity lowers blood sugars.

An thus, the converse should hold true... less physical activity than normal results in higher than normal blood sugars.

Except when it doesn't.

Let me explain.

Long car rides make Grace's blood sugar drop... a lot.

It's happened time and time again. We get in the car for an extended drive and her blood sugars always fall. If I follow the "rules" her decrease in physical activity should require an increased need for insulin. But no.

Could it be a leftover from the years she suffered from carsickness? Is her body still sent into internal turmoil in the car, but instead of it projectiling out of her mouth it's expressed in her crazy numbers?

I don't know. What I do know is that it's so hard for me to ignore the shoulds, and go with my gut.

When It Isn't What It Seems

2011-04-01T23:10:00.000-04:00

Sometimes with Diabetes, as in life, things aren't what they seem. Is that freakish high blood sugar really that, or is there some residual Sweedish Fish left on the fingertips of a previous low episode? (last week). Are high numbers at bedtime an indication of a site gone bad, or notice that it's time to tweak the dinner insulin: carb ratios? (last night)

And sometimes a whiny emotional outburst is the cover for internal turmoil of the diabetes variety.

Take, for example, an issue we've just recently burrowed to the bottom of. The school bus. Yes, that bastion of hierarchy where, with little or no supervision, older kids can get all Lord Of The Flies on unsuspecting younger children. So I was somewhat skeptical when Grace began complaining that the good-for-nothing second graders (Little Sister included) were stealing the hard earned 4th grade seats. Being a walker myself in elementary school, I was unaware of the seating chart on any given school bus - younger kids up front, older kids in the back (where I can only presume they're planning the next hostile takeover of the cafeteria on pizza day!).

Now you must understand that there's only 12 kids on our bus. TWELVE! that leaves, what, 40 or so seats available. But this bee had gotten into Grace's bonnet and she began complaining with more frequency about the snotty, entitled, second graders.

"Gracie, just find another seat," I said, much more concerned with those dinner I:C ratios swimming in my brain. "Or if it really bothers you, ask them politely to switch seats."

Really, I thought, wah-wah-wah. She needs to learn to handle these petty grievances on her own.

But then out came the true problem buried beneath all the whining and complaining. "Mom," she said, clearly struggling to find the words that would help me understand her dilemma. "You don't understand. I have to go to the nurse at dismissal to have my number checked. That's right when they call my bus. So my friends get on, then the second graders (said with as much disdain as possible) take all the next seats and by the time I get on there's no room left near my friends!"

BINGO! D dilemma, indeed.

I've dealt with my share of mean girls, I've survived puberty, first crushes, heart breaks and peer pressure. But I've never had to deal with all of that while living with a chronic condition that none of my closest friends has. I only hope I can be the mother Grace needs me to be to help guide her through. I hope I can recognize when her troubles aren't what they seem when diabetes is involved.

Chirp, chirp, chirp...

2011-03-29T15:33:00.003-04:00

You hear the crickets chirping? I do too. That's the deafening sound of the silence that's befallen my blog.

I haven't posted in weeks. To be honest, I haven't even read OTHER blogs in weeks.

I just don't seem to have the energy these days. I'm tired, stressed, and overwhelmed. I feel like I haven't had a moment to myself in weeks. It's actually taking a really long time to even write this post because I keep pausing to simply stare out the window, lost in a vegetative state.

First, as usual, I'll start with the diabetes stuff. I suppose it's just "life with D" but it seems like there's always something messing with Grace's numbers. So I'm never quite sure if her numbers are a trend that need to be addressed, or an anomaly that will correct itself. Are the past two days high numbers due to stress and hours of sitting for MCAS (Mass. state testing)? Or maybe rebound numbers after a weekend of skiing? (No, I didn't ski. I don't ski. I was the "helping my husband ski with three kids" facilitator. It was a full-time job. It sucked most of the time.)

And that's just my latest D issue. There's ALWAYS something. And it's exhausting. And overwhelming. Last week we changed some of her basals. Are they working? Not sure yet, what with all the state testing and skiing going on.

And then there's the Variety Show. The annual talent show at the elementary school. Grace is in two acts, Little Sister's in one and Little Brother's in one. Somehow I was put in charge of my two girl's acts. Good God, the drama that comes from directing seven young girls in a two minute dance routine! There's choreography, costumes, props, rehearsals. Last night was the dress rehearsal (yes, the finish line is in sight!). I was there for FOUR AND A HALF HOURS! Are you freaking kidding me?

Did I mention that Little Sister's birthday party is this weekend? Am I prepared? Nope! Ten 8 year old girls will be coming expecting crafts for two hours. Sounds fun, huh? Then my in-laws are coming on Sunday, because God forbid we have one celebration and get it over with. I have to clean the house (after Hurricane Second Grade Girl Party) and cook them dinner and, come to think of it, make another cake since Sunday is Little Sister's actual birthday.

Then my husband leaves for Vegas for 12 days. And soccer, softball, lacrosse and t-ball all start up. Then we go to New Jersey for Easter.

And all I want to do is crawl into bed, watch a little hockey and Dancing With The Stars (yes, I have eclectic taste) and go to sleep.

And not wake up till summer vacation.

Diabetes on Display

2011-02-23T10:41:00.012-05:00

Last Saturday we spent the day at Boston's Museum of Science. We planned to go because they have a temporary exhibit called...

There was nothing totally new or Earth-shattering, but maybe that's just my view. Any person with, or parent of, a Type 1 Diabetic already knows most of what was on display. But I'm all for education and advocacy, so...

Here's Grace inside a giant blood vessel...

How much blood would she need for this meter...

By far the coolest part of the exhibit was a hands-on demonstration at the end. There was a bucket filled with water, and several soda cans next to it. The kids were asked if they thought the soda cans would sink or float. Then they picked a can and tested their hypothesis. And what do you know? The sugary sodas sank like a rock, and the sugar-free sodas floated! I couldn't get a great picture, but here's what I got... Regular soda contains sugar... LOTS of sugar. In some cases around 40 grams of sugar. Diet sodas contain artificial sweeteners, which are hundreds of times sweeter than regular sugar. This means far less artificial sweeteners are used in diet sodas. The difference in the amount of dissolved sweeteners leads to a difference in density. Cans of regular soda tend to be more dense than water, so they sink. Cans of diet soda tend to be less dense than water, so they float.

Now, I'm not advocating drinking copious amounts of diet soda, as I'm not a huge fan of artificial sweeteners. But I did think this was a cool experiment, and helpful in visually explaining how much sugar goes into soda. And who knows, it may show up at this year's Science Fair!

Overall if was a fun exhibit to take the kids to. It talked about Type 1 and Type 2 and difference between the two. It talked about diet and exercise, as well as the discovery of insulin.

We probably spent about an hour in the exhibit, then went and browsed the rest of the museum. I came across a live discussion about diabetes conducted by two doctors from Joslin. I only sat and listened for about 10 minutes, but in that time I learned that a prevailing theory on why Type 2 is on the rise is that some people have always carried the genetic trait and passed it on t0 their descendants. As industrialization has become global, and people have come indoors and become more sedentary, this trait can no longer be masked and controlled by vigorous activity. China and India show the highest increases in Type 2 diabetes, as industrialization has more recently exploded in those parts of the world.

All in all we had lots of fun, and learned some new things along the way. I don't know if it's a traveling exhibit, but if you hear about it coming near you, it's definitely worth the trip.

An Open Letter to Grace's Teacher

2011-02-18T15:24:00.003-05:00

Dear Mr. S.,

I wanted to take the time to thank you for saving Grace's life today. You noticed something looked wrong with her when she was reading with a friend. She doesn't remember the details, but she remembers you standing in front of her with a Star Burst saying, "Eat this."

She doesn't remember you taking her to the nurse either, but you did. When the nurse checked her blood sugar it was 30. Her brain didn't have enough energy to function and was shutting down. She had a juice box and a 15 carb snack, followed by another snack, and began to recover.

Grace was amazed that she didn't feel any symptoms of the low. I needed to remind her that her confusion and blacking out WAS the symptom. This was the first time she's ever needed help and wasn't able to ask for it herself. Thank God you were there, looking out for her.

As a fourth grade teacher you're probably prepared for almost anything when you walk in your class in the morning. But I can guarantee you had no idea you'd be called on to save a life today. As a parent of a Type 1 Diabetic, I worry for her safety every time she's not with me (and even when she is!). We are truly blessed that people like you are in her life to watch over her as well.

Thank you, from the bottom of my heart. You saved my daughter's life today. God Bless you.

Sincerely,

Pam (Grace's mom)

Happy Birthday, Mom!

2011-02-15T17:26:00.006-05:00

Saturday was my Mom's birthday. I had intended to write a post about how great my Mom is, and what an inspiration she is. But weekends are busy around here, and time got away from me. So now I find myself with a few minutes to spare and no kids on top of me. Turn on my computer, get the creative juices flowing, and... nothing. Blank. I honestly can't think of what to write.

It's not for lack of inspiration. I just don't know where to begin.

My mom married the man who would become my model for what a great husband and father should be.

My mom worked nights for a time, but I can honestly say that I never remember her not being there. She was such a source of love and compassion when I was growing up that her absence was never felt.

One of my strongest childhood memories is of sitting on my mom's lap before bedtime on Christmas night. We were looking at the tree, listening to Christmas carols. I told her that I wished Christmas weren't over. She said, "Me too." I see now how hard it is to watch your children grow up.

My mom raised four happy, healthy, successful children. Hello! That's my main goal in life!

My mom nursed four children with chronic asthma, two as infants and two when they were teens. My oldest sister had it the worst as a baby. She had to be taken to the ER several times because she couldn't breathe.

My mom cooked though she never enjoyed it, ironed though she hated it with a passion, and was even the Girl Scout Cookie Chairperson, all in the name of her family. These are all things I took for granted as a child, but have come to appreciate as a mother.

My mom lost her father to cancer, her brother to complications from alcoholism, and her other brother to a heart attack. Her mother lived with us until she died.

Now my mom is at a point in her life that, I'm sure, she never imagined she'd be. She's taking care of my father who's health is rapidly deteriorating. He has Parkinson's and a myriad of other complications. Her life, so long lived in service to others, is now about caring for her husband who can no longer care for himself. Their winter vacations, something that they used to wait the entire year for, are a thing of the past. It would be too much for my dad. My mom has even given up her career as a nurse, something she was born to do, because he can't be left alone.

So how do I pay tribute to this woman who has given so much to so many?

All I can say is that I love you, Mom. I miss you every day and wish we lived closer so that I could help you out more. You're a great mom, Nanny and wife.

I honor you, Mom, on your birthday and every day. I love you and cherish our bond. I hope you had a wonderful birthday!

What does a "cure" mean to me?

2011-02-06T13:20:00.001-05:00

Up until a couple of days ago I thought this was the stupidest question I had ever heard. Honestly? A cure? A cure means that my daughter has a fully functioning pancreas, capable of self-regulating her body's insulin needs. Duh.

But then I read through some of the thread at CWD about JDRFs new direction for the future, and I realized how many different things a cure can mean to different people.

To be truthful, and it's hard to put this out there, I don't believe there will be a cure for Type 1 Diabetes, by MY definition, in Grace's lifetime. I see her, at some point, using some future incarnation of a closed loop system, where one machine will constantly check her blood sugar and regulate the amount of insulin she receives. An alarm would sound when she's going low and needs glucose. But to me, this is not a cure. This is one generation beyond how we treat Grace now. Treatment, not cure.

Maybe I'm wrong, and a true cure will someday be found for Grace.

Maybe a cure will come in the form of prevention for those not yet diagnosed.

Maybe Grace's children won't have to worry that they are at higher risk because their mother is a T1D.

Maybe it will come from stem cells or encapsulated pig islets.

I don't know what the future will bring. I only know what I can do now.

I will continue to support the JDRF, and will continue to Walk For A Cure. Because that closed loop system will hopefully make it easier for Grace to maintain a low A1C. And one day Grace won't be a CWD (child with diabetes), she'll be a PWD (person with diabetes). She will move into adulthood, and will need a support system around her other than me.

And for us, the JDRF walks aren't just about raising money to find a cure. They're about community and love and support. I am amazed at the amount of friends and family who drop everything to walk with us. And the outpouring of financial support is astounding. People care. The walk is one day to show how much you care.

I don't think about a cure that much. We were all told at diagnosis that a cure is only about 10 years away. Kelly was told that. A teacher at Grace's school was told that 50 years ago. I believed it for a while. I don't any more.

But I do believe in technology making life easier.

I believe in research.

I believe in prevention saving millions from being diagnosed.

I believe in support.

I believe in community.

An Early Spring?

2011-02-05T10:48:00.002-05:00

Just to update everyone on my personal snow hell...

My husband was able to come home a day early from his business trip to avoid the possible snow tonight. Thank God!

This picture was taken two days ago. That's my mailbox.

Water has breached the perimeter. I noticed last night a big water stain on the ceiling inside Grace's closet.

Today my husband plans on trying to get as much snow and ice off the roof as possible. This means climbing up a ladder (that's resting in snow) and precariously chipping away at snow and ice two stories above the ground.

Weather.com predicts snow 4 out of the next 10 days.

That stupid groundhog can take his prediction and shove it where his shadow don't shine!

Snowmageddon, 2011

2011-02-02T19:36:00.002-05:00

Holy CRAP, that's a lot of snow!

Like, snow on top of snow on top of snow.

Honestly, I think we're approaching 4 feet of snow in the back yard. Any self-respecting ski mountain would be happy with that. BUT IT'S MY BACK YARD!

Today was our third snow day off from school. And my husband's away. Not just anywhere... New Orleans. Yes, the city of my lost weekend with my sister where I ran away from home 4 months after Grace's diagnosis, and one month after the stomach bug from hell exploded in my house sending us back to the hospital.

Ah, the memories.

But back to the snow.

Have you ever watched The Deadliest Catch? It's a reality show about Alaskan King Crab fisherman. It's, as the title implies, an extremely dangerous profession. One thing they have to deal with is ice build-up on the boat. When too much ice builds up, the boat becomes top heavy and at risk of capsizing. This would be bad. So the crew has to take hammers and mallets and bang the ice off the boat. Like, 4 inch thick ice. But these are manly men and though they don't seem to enjoy this task, they know that it's something that must be done.

Now picture me, doing the same thing, on my back porch today. Hammer in hand, banging, banging, banging at two inch thick ice build-up. If this isn't done my house won't capsize, but it will create a fertile haven for ice dams. For those of you in warmer climates, an ice dam is when snow melt gets trapped behind roof ice, has nowhere else to go, so leaks into your house. This has happened before, resulting in anywhere from a small water stain on my wall to a nice rain shower in my kitchen (entire ceiling needed to be replaced). With my beloved husband away on business, the job of removing the ice falls on me. Good times.

I have to keep a close eye on Grace's blood sugar numbers in this weather, as slogging through 4 feet of snow takes a HUGE amount of energy, and she tends to drop quickly. Also, it seems that when she's out in the cold she doesn't feel the symptoms of a low blood sugar. So we test more often and are more liberal with the sugar free hot chocolate. I've also discovered that she ROCKS pasta on these types of days. She can have a regular portion of pasta and doesn't even need an extended bolus and her numbers stay level. WOO-HOO! (The story of how we discovered this is a blog post all it's own. Stay tuned.)

So here's to hoping that ice dams don't form, it won't rain in my kitchen, Grace's blood sugar doesn't go low tonight due to all the activity, and my husband returns home on Saturday as planned and doesn't get stuck in the next snow storm.

Two Years

2011-01-23T12:53:00.004-05:00

It's been exactly two years since I started my job as a full-time pancreas. To be honest, I totally forgot.

That is, until Penny called so her Grace could wish my Grace at Happy Diaversary.

Then Grace went over to her friend M's house to play. M was diagnosed with T1D last year, and mutual friends put us in touch.

Grace's BFF A has an older sister H. H's best friend is a T1D.

That's the good. Because something good has to come from her diagnosis. Has to. It's the connections. The love. The community. My husband and I are closer than ever. I found the D-OC. Grace has developed her own community. It includes pen-pals and play dates, and other parents who "get it."

The bad that has come is too numerous and just to sad to mention. Today isn't the day for that.

Today is a day for embracing the good.

I believe you can't welcome new things into your life until you let go of some of the old things. This is true for material items as well as emotions. If I spend my days mired in upset, there's no space for gratefulness to take root. When I'm in a place where I can put down the sadness, I can finally make room for the joy. Some day's I'm pretty good at this. Other's I'm not.

On the day Grace was diagnosed, my sister called from Florida. Without needing to say a word, we simply cried together on the phone. Then she said something that at the time I knew to be true but couldn't quite see it. She said (and I paraphrase, because for God's sake it was all a blur), "Just know that one day this will all be okay."

And though it sucks down to my very marrow, she's right.

Mama, Come Look At This!

2011-01-17T11:05:00.002-05:00

Seriously... how does this even happen?

The damn clumps are after us!

Clumps

2011-01-16T11:52:00.003-05:00

Does anyone else notice that bad things, diabetes speaking, comes in clumps? A bad site seems to bring with it at least one or two more bad sites the same week. A string of high numbers always stick around for a couple days, then go away as mysteriously as they came. High ketones yesterday (dealt with and corrected) has once again produced ketones today. And all I'm left with is wondering what the he'll is going on?

Bad insulin or site? No, she was fine last night.

Ah, the guessing game.

Anyone else have the same clumpy problems as me?

Newborn

2011-01-14T19:32:00.002-05:00

So many times I've correlated caring for a diabetic to caring for a newborn. The first time I felt this was when we brought Grace home from the hospital after her diagnosis. It felt like having a newborn in the house again, from the nervousness and fear to the sleepless nights and new feeding schedules.

This feeling came to me again last night while fighting a stubborn low. It was 1 in the morning, and I was gently, yet desperately, trying to get a sound asleep Grace to drink juice from a straw. Her little lips would purse and suck, suck, then go slack as she'd succumb to the depths of sleep. She looked so much like she did as an infant, when I would try to coax her to nurse just a little bit longer, in the hopes that I could get a few extra minutes of much needed sleep. I used to rub her palms with my thumbs to stimulate the sucking reflex, so there I was last night, rubbing her palms to see if it would still work. (It didn't. I think she's so used to me grabbing her hands for a blood sugar check that she reflexively pulls away.).

She eventually drank the juice and her numbers came up. She won't outgrow this phase of her life as she outgrew being a baby. But as with every child, it's my job to take care of her and keep her safe until she's able to do it herself.

The Naked Truth

2011-01-03T17:36:00.005-05:00

One of the things Grace wanted for Christmas was an insulin pump skin. Her pump is just over a year old, but definitely beginning to show signs of wear and tear. So a little birdie told my sister, and what do you think was under the tree on Christmas morning?

Tie-dye! Just the one she wanted! OMG, Aunt D is the BEST!

But there seems to be a problem. For the eight days she wore the skin, she had three major problems. Each time her blood sugars have risen and refused to come down. I'm talking 300s and 400s. Each time the site looks fine when we pull it. Each time it's been a relatively new site.

What I'm saying is, there were no air bubbles in the tubing, no blood in the canula, the canula was not kinked, and the insulin was fresh. Could it be that the rubber skin not allowing air to circulate around the pump and thus heating up the insulin? It's an Animus pump and an Animus skin - they're made to go together. But, hello? Three site changes in 8 days? Seems a bit much, no?

Has anyone else had this problem? She's taking a break from wearing the skin for now, to test my theory. We'll try again in a couple of days and see if we get different results. But for now it's back to the plain old nakey pump.

This Is It

2010-12-30T12:58:00.004-05:00

This is what a blood sugar of 477 looks like.

It's what having ketones so high you throw up looks like.

This is what you end up looking like when the insulin in your pump heats up too much.

It's what having to leave a sleepover at a friend's house before breakfast because you feel so bad looks like.

It's what a blood sugar of 55 AFTER the 477 looks like.

It's what having to miss your first ski lesson with your brother and sister because you feel like poo looks like.

This is what it looks like to have your body ravaged by out of control blood sugars.

This is what diabetes on a bad day looks like.

Basal Testing - Take One

2010-12-29T14:52:00.002-05:00

I was inspired by Reyna's post about basal testing, so I got off my ever expanding and sloth-like lazy butt and set to testing Grace. For those of you who don't know, basal testing is the process by which you ensure you're receiving the correct amount of insulin from your pump to keep your blood sugars in range when NOT eating food. Basically, your body needs insulin even when not eating. If you can get your fasting insulin needs figured out (you basal), as well as how much insulin you need for every carbohydrate you eat (your bolus amounts), in an ideal world your blood sugars will remain stable. Now, we all know this fictional ideal world does not exist due to variables such as exercise, growth hormones, illness, and let's not discount the fact that diabetes just likes to screw with us sometimes. But getting your basal and bolus amounts set is half the battle.

Figuring out bolus amounts, or insulin to carb ratios, is pretty straight forward. Count carbs to be consumed, give insulin, check blood sugar later. If BS is high, chances are you didn't give enough insulin to cover the meal. Adjust the dosage and try again later.

Basal amounts, for me, seem a bit trickier. You have to test without any carbs in your system. So I planned to test Grace's basals this morning, and hold off breakfast and excessive activity for as long as possible. I figured TV would distract her for a while.

Her overnight numbers were steady. At 10pm she was 70, so she had half a banana. At 11:15 she was 166, and at 12m she was 159. By 7am she was still 166, so though that's a bit high for her in the morning, she seemed to stay flat all night.

Here's where things started to go awry. At 8am she was 185. I've suspected for a while that she was creeping up in the mid-mornings, but she usually starts her day around 110 and goes up from there. Starting at 166 doesn't leave much room for her to go up without me correcting her. By 9:15 she was 211 and the basal testing was over almost before it started.

So though it was a much shorter test than I had planned, I did see that she is, in fact, going up mid mornings. I increased her basal from 7-10am and plan to test her morning basals again tomorrow. When they seem in line I'll move on to lunch time, then dinner. And by that time I'm sure her needs will change and I'll have to start all over again.

What A Difference A Year Makes

2010-12-28T22:03:00.003-05:00

Last year was our first Christmas after Grace's diagnosis. Though she was diagnosed in late January, and we had almost a full year under our belts, Christmas was a disaster. Two infusion sites failed in one week. I was overwhelmed by the stress of trying to figure out how to mix a holiday traditionally filled with food, food, and more food, with our new diabetic ways. And my husband was dealing with his own issues - namely a persistent denial that his daughter was facing a lifelong chronic condition (cut to him giving her two HUGE pieces of pie for dessert and not blousing for it!). And her numbers! Good Lord we couldn't keep her below 250 (see my husband). As it turned out, Grace was taking a huge leap off her honeymoon. We were finally able to make some BIG adjustments to bring her back in line. But it was exhausting and stressful and really, really hard.

At the time I wasn't blogging yet, and hadn't really even found any other D mamas to commiserate with.

Then I had a similar situation over spring vacation .

Then I started blogging.

Then the world seemed to lift off my shoulders.

I found online a community just like me. I could vent. I could cry. I could celebrate. I could listen. I could learn. And I became a better person and a better pancreas for it.

And here we are a year later. Grace's blood sugar was not perfect on Christmas day, but they were damned good, all things considered. We all enjoyed receiving our Ornapod, as well as lots of holiday cards from other D families (our favorite game was to play, "Guess which one's the diabetic!").

I believe it truly takes a village to raise a child. This is exponentially true when raising a child with diabetes. My community includes family, friends, co-workers, doctors, nurses, and the DOC. Thank you all for being part of my team.

Merry Christmas!

2010-12-26T10:47:00.001-05:00

The Gift of an OrnaPod

2010-12-17T15:41:00.002-05:00

Look what Santa sent us!

Well, not Santa. Actually Super Nate!

Laura went crazy with the bedazzler and hot glue gun, and created fantastic ornaments out of Super Nate's old Omnipods. Martha Stewart I am not, but I think Laura could give her a run for her money!

Thank you so much for sending us one. It's now displayed proudly on our tree, and every time I see it I think of Super Cute Super Nate!

Total Diabetes Dominance, Chapter 2

2010-12-16T22:23:00.003-05:00

We went to Grace's quarterly endocrinologist appointment today. You know, the one we needed to postpone a few weeks ago due to the stomach bug ravaging my household. Well, it was rescheduled for after school today and I'm not sure what I was thinking when I did that. It's 8 days before Christmas, and I'm not done shopping yet. And though I'm holding onto my holiday spirit by my fingernails, I have to admit that exhaustion is starting to set in. That, mixed with a fair amount of liquid holiday "spirits" have left me feeling pickled. But charge on I must, because we have a party Friday night and Saturday night. I'm up for the task, but I may need to stock up on coffee and Advil to make it through.

Back to the endo. Grace's A1C is 6.6. I'm pretty neutral about that number because she's still experiencing frequent low blood sugar episodes. Even though the number is in a great range, it's come at the cost of lots of lows. So that was our major priority to address.

First, we changed Grace's insulin to carb ratio from 1:35 up to 1:50 from 10am to 5pm. We did this for two main reasons. She's dropping like rock between 10am (snack time at school) and noon (lunch). She could be 297 at 10 and 59 at lunch. And this happens regularly. Then she drops between 3pm (after school snack) and dinner. So, clearly, she's getting too much insulin during these times. Since her basal is already only 0.15 during those hours, we're looking to the bolus amounts.

Next, we loosened her target number from 110 to 150 from 9am to 5am. (It's staying at 110 for breakfast because she's so insulin resistant in the morning anyway.) Instead of adjusting her Insulin Sensitivity Factor (set at 125) we decided to just aim higher, as it were.

All these changes, specifically changes that will hopefully raise Grace's blood sugar, have come at a time when I've been re-adjusting my view on her numbers. I used to think of it as a goal. Tight control was the goal. Blood sugars between 90 and 120 was what I was aiming for. Anything over 150 seemed on the high side to me. If I could just wrestle this stupid beast to the ground in a head-lock, keep my daughter's numbers tight and steady, I'd win. What would I win? Not sure. But what I ended up with is Grace not feeling her lows until the 40s. And she's there way more than she should be. Because I can't control it. I can't keep her within 30 points because I AM NOT IN CONTROL.

... cut to me in group therapy, "Hi, my name is Pam, and I am not in control."

So over the past couple weeks, I've felt that need for Total Diabetes Dominance (possible name for my as yet unwritten autobiography) lifting off my shoulders. I would be much happier with Grace's A1C in the 7s and her feeling her lows in the 60s, not the 40s. And to do that we have to raise her numbers. Will these changes be the perfect solution? Not sure yet. I'll know in a couple days. And if we need to adjust further we will. But this is the new me, embracing numbers up to 200 (sheesh, I have to draw the line somewhere). If she's steady up higher, it's much better for her long-term health than ping-ponging from the 50s to the 200s. It's not going to be easy, but if I broaden my range of acceptable numbers, my daughter's health will definitely win.

Feelin' the Love

2010-12-02T19:29:00.004-05:00

I am in the holiday spirit! I'm happy, I like my job, I like my kids and my husband (today!), and all is well here.

I can't wait for the 2 holiday parties we're going to this weekend, as well as hosting a dinner on Sunday night. And we have to get our tree. My calendar is full and it makes my heart burst with smiles.

I don't know what triggered it, but I feel very Zen in life right now. No, Grace's numbers haven't been dwelling in blood sugar heaven lately, but they're getting better and that's great.

I haven't been posting or commenting a lot lately, but I've been reading lots of blogs and it makes me happy to learn more every day about my on-line friends. Even though I don't have a lot to say, I get such warmth from reading your stories, so thank you for that.

I hope you all find your holiday spirit. Life is short, and we should enjoy the time we have. Even in this crazy busy, commercialized time of year, love is love and that's what it's all about.

Find the love. Live in it.

She Made It!

2010-12-01T15:52:00.002-05:00

Phew! One of those mornings, you know?

Get up, shower and fully get myself ready for the day, then wake kids.

Grace's blood sugar is 163. Hmmm, seems to be trending high in the mornings...

What do you want for breakfast? No, whipped cream is NOT a breakfast food.

It's cold today, don't forget sweatshirts.

MAKE YOUR BEDS!

Get down here for breakfast!

Who has library today? Don't forget your books!

Who has PE today? No, you can't wear those boots, you have to wear sneakers!

You want to buy lunch? Let me see what's on the menu.

You don't want to buy lunch, I'll make it for you.

Did you make your beds?

Did you remember to feed the fish? Not since when?

Grace, I need to change your site after breakfast, you only have 6 units of insulin left.

Don't forget to bring your math project to school!

Hello, I'm still waiting for breakfast requests!

Mom, pack me more for lunch, I'm starved and you don't send enough.

Mom, don't pack me so much for lunch, I don't have enough time to eat it all.

Grace, finish breakfast so I can change your site.

Clear your dishes, please!

Teeth and hair! Teeth and hair! Teeth and hair!

You want a french braid? With a ribbon wrapped through it?

Hurry up, your going to miss the bus!

Finish breakfast!

Teeth and hair!

Stop fighting with your brother!

Grace, your site!

Teeth and hair!

You need a haircut.

Dishes, lunches, homework.

Shoes on, backpacks on.

Here's $20 for the room parent for holiday gifts.

Love you. Kisses. Have a great day.

THE BUS IS HERE!

Bye!

SHIT! Forgot to change the site!

But...

she made it through the day with 1 unit to spare.

Phew!

Happy Thanksgiving

2010-11-25T12:15:00.004-05:00

This is my second Thanksgiving as an active pancreas. Last year I was scared and overwhelmed by the quantity of carb-laden foods throughout the day. I looked at the serving dishes, trying to decide what to give Grace, and all I saw was potatoes and stuffing and corn casserole and pie. I thought I'd never enjoy and truly feel relaxed at the holidays again.

Now here I am again, one year later. I've had an entire year of learning, practicing, and trial and error. Grace's insulin to carb ratios have changed (as recently as this morning - down to 1:12 for breakfast), as have her basal rates ant sensitivity factor. More changes are on the horizon. But probably the biggest change doesn't have anything to do with my daughter, her pump or her ratios. The biggest change is within me. I am a different pancreas, and therefore a different mom.

I have learned that my freaking out doesn't actually help to improve Grace's blood sugar.

I've learned that sometimes (ok, most of the time) diabetes just sucks and Grace will have wonky numbers no matter how hard I try.

I've learned that Grace is a 9 year old girl first and a diabetic second.

I've learned that blogging has connected me to a wonderfully heartwarming on-line community, without which I'd feel so alone.

I've learned that life and love go on, and happiness isn't found in perfect numbers, but in the smile that lives in my daughter's heart.

And that is what I'm truly thankful for today.

FYI

2010-11-18T22:37:00.003-05:00

Alexis, over at Justice's Misbehaving Pancreas, is looking for some info. Here's mine...

For informative purposes:
Grace is 9 years old. She was diagnosed T1D 1/23/09. Coming up on our 2 year diaversary.

When did you guys start pumping?
September 2009. Animas Ping - blue.

What do you use to change sites? Whats your "process"?
She's never had a problem with sites sticking. When she first started pumping the nurse educator suggested, due to her age, that we use IV Prep. Tried it... couldn't pry the sucker off! So now we just use an alcohol prep to clean the site (bum only), and Unisolve to remove the old one. Even three days in a pool isn't an adhesive problem.

How often do you check ketones?
If she's over 250 more than once and we can't attribute it to food. And any time she's sick. Just blew threw a bunch of blood ketone test strips, checking her every two hours, with our last bout of the stomach bug.

When do you do an unscheduled site change?
LOTS of unexplained highs. As in, at least a full day of over 300. Rarely has she yanked the site out. (I know, I've just jinxed her.)

Whats your childs target?
110 during the day, 150 at night.

What was your childs last A1C?
6.2. This is misleadingly low. She was having a ton of lows over the summer that lead to this number. So this is a bad 6.2.

What kind of strips do you use?
One Touch blood glucose strips and Precision Xtra blood ketone strips.

Which do you prefer?
I've used the Precision Xtra bg strips in the past but don't like how they're individually wrapped. Just personal preference.

What kind of Peanut Butter do you use?
Sunbutter, sunflower seed butter. I prefer chunky but my grocery store doesn't carry it, only creamy.

Do you allow juice when not low?
No, out of the question.

Do you still check your child at night?
Yep, almost every night. Our routine is to check at her bedtime (8:30ish) and our bedtime (11ish). If she's holding steady both those times, as well as before dinner, I'll sometimes not check her again till morning. But, lordy lordy, that's rare. For example, if she's 155 at her bedtime and 120 at mine, I'm left wondering if she'll continue to drop. So it's the odd night that I don't check her again between 1 and 2am.

What is your rule on sweets?
Even before dx we never aloud many sweets. After school the kids can have one "snack" (chips, pretzels, cheeze-its etc.) and then a piece of fruit. They've all been aloud one piece of Halloween candy a day, but thankfully I think that's at an end.

Regular pasta or whole wheat?
Both, but more whole wheat.

What about veggies and fruits?
Fruit with every meal and after school snack. Veggies usually only with dinner. All my kids love both.

White bread or whole wheat?
We use Market Basket (our grocery) whole wheat "sandwich" bread. Yes, it's actually called "Sandwich" bread. It's thinner slices than normal bread and only 11 carbs per slice.

Do you use glucose tabs?
Maybe Grace is a bit wacky here, but she likes glucose tabs!

What do you use to treat lows?
Juice, glucose tabs, Starburst.

What does your child use to hold their pump/cgm?
She uses the clip and clips it onto her waist band or pocket. During soccer she wears a Lycra waist band. Never uses her pouches anymore.

Unfortunately, my camera crapped out. No pics you haven't already seen!

Thanks, Alexis, for helping us learn more about one another!

Molly

2010-11-15T16:03:00.004-05:00

You barked when the kids were napping, you shed all over my floors, you licked my clean windows. You were there every time I brought a new baby home, you comforted them when they were sad, you always greeted us with love at the door when we came home. I loved you very much and will miss you. I hope you find happiness and comfort wherever you are now.

P.S. Tell Max I still think of him.

It's World Diabetes Day?

2010-11-14T22:47:00.003-05:00

Today, November 14th, is World Diabetes Day. Instead of spending my day advocating, campaigning or educating those around me about Type 1 Diabetes, I had a "normal" day. What is "normal" around here? Well, I'll tell you...

Grace spent most of the day throwing up. She caught the stomach bug that Little Brother had earlier in the week. Unfortunately, she started throwing up with her blood sugar already solidly low. As in 49. You tell me; how do you raise the blood sugar of a 9 year old who's nauseous and throwing up, thus can't keep down any of the sugar you've tried to give her? Glucose tab? Threw it up. Apple juice? Threw it up. Pretzels? Threw them up too. At this point I took off her insulin pump. Thankfully, she was able to keep the various foods down for about 10 minutes each, so some sugar was absorbed. Her follow-up blood sugars were a slow and steady climb back into the range we want her - 59, 66,76, 89, 105.

By 7:30, her pump had been off for about 5 hours. I checked her blood sugar and she was 180. Slightly high, but so much better than low. Then I checker her ketones. 1.2 on the Precision Xtra blood ketone meter. Anything over 0.6 is considered elevated. My only point of reference was the last time she had a stomach bug for a week. She ended up in the hospital when her ketones got to 2.5. So 1.6 is high, but I knew she'd had no insulin for a while. So I plugged her back into her pump, corrected the high blood sugar, and cut her basal back by 50%. Hopefully the throwing up is over, and if we can keep her ketones down she'll be on the mend.

And Little Sister started throwing up at 7pm tonight.

And my dog is dying. She's been sick for a while, but today she took a major turn for the worse. She doesn't eat very much any more and lost 20 pounds. Today, all of the sudden, she can't seem to walk very well. She seems to be suffering, and that's the point we decided to help end her misery. If she makes it through the night my husband plans to take her in tomorrow to be put to sleep.

So no, I didn't do much to celebrate World Diabetes Day. Not much to celebrate around here today. But I'm glad to hear stories of how my fellow bloggers did.

6 Things You Should Know About Diabetes

2010-11-09T19:34:00.005-05:00

Wow - I've been absent from the DOC for a while. I didn't realize it's Diabetes Blog Day until just now, when I turned on my computer. This year's topic that everyone's writing about is Six Things You Want People to Know About Diabetes. I wanted to write mine without reading everyone elses first, so without any preparation, here goes:

1. People die from complications of diabetes every day. In Rwanda, the average life expectancy of a child diagnosed with Type 1 Diabetes is 5 years. Right here in the US, even well treated, seemingly healthy diabetics die from Dead In Bed Syndrome, the most recent case I know of was October 20th. A cure is desperately needed.

2. Just because my daughter appears to be a healthy 9 year old girl, doesn't mean her body isn't ravaged daily by high and low bloodsugars. A cure is desperately needed.

3. A diabetes diagnosis affects the entire family. Ask my other two children who also had to give up most of their Halloween candy. Ask my husband who worries the most about his oldest child. Ask my mother-in-law who's had to perform an insulin pump site change for the first time ever with me giving her instructions over the phone. Ask me, the mother of a diabetic. I can't put into words how much my life has changed since my daughter's diagnosis. A cure is desperately needed.

4. You don't get Type 1 Diabetes from eating too much junk food, you can't cure it by exercising more, and you never outgrow it. It's a lifetime sentence. A cure is desperately needed.

5. There are people out there today, adults and children, who are denied health insurance coverage because they have Type 1 Diabetes. Insulin saves my daughter's life, and it should be a crime for insurance companies to say someone is "too expensive" to cover. If you really want to save the system money, give diabetics the best care out there to prevent the cost of future complications. A cure is desperately needed.

6. I couldn't decide what to write for this one, so after a while I asked Grace. Her answer probably summed it up the best. "Diabetes sucks." A cure is desperately needed.

An Open Letter To Animas

2010-10-28T15:35:00.002-04:00

I loved Meri's Open Letter to Target, made even better by the fact that she received a response! So with that in mind, I've written my own open letter, to a company near and dear to my daughter's pancreas...

Dear Animas,

My daughter and I are devoted users of your One Touch Ping insulin pump. She is the wearer and I am the operator. We are a team - me, my daughter and her pump. We've been working together for just over a year, and have been very happy as a team.

As the wearer, my daughter loves the waterproof feature. She's put it to the test by accident a couple of times, with no harm done. She's also a fan of the meter remote. Being able to bolus her from across the room is a big plus when your at birthday parties.

As the operator, I originally chose your product over others because of the low dosing capabilities. My daughter is fairly insulin sensitive, and small incremental amounts helps me to keep her blood sugars stable.

There are, however, a few ideas to consider as you, I'm sure, are working on the One Touch Ping - The Next Generation. They're in order from least affecting my day, to most.

1. Can you upgrade the screen on the meter remote? The screen on the pump is bright, crystal clear, and in color! The meter remote screen evokes images of the old Atari game, Pong. I've heard via the DOC that a new meter is now available in Canada with an upgraded screen. We'd love to see it in the states, too.

2. Part of my nightly routine is to check my daughter's blood sugar at my bedtime (around 11pm) and then again around 2am. Sometimes, if warranted, I check more often. To do this, I either need to bring a flashlight or turn the light on in the room. The problem is that I can't seem to get the tip of the strip onto the tiny blood droplet in the dark. I can find her hand, poke it with the lancet, insert the strip into the meter, all in the dark, but I can't find the darned blood! My idea is to put a small light on the top of the meter that shines to the tip of the strip. That way I can point the strip at her finger, find the blood, and unite the two. (My husband says this technology exists already on electric drills. If carpenters can enjoy the feature why can't your customers?)

3. As I already mentioned, one of the main reasons we chose your pump was the low dosing ability. My daughter is out of her honeymoon phase but still only uses about 15 units of insulin in a 24 hour period. Small amounts of insulin go a long way with her. That being said, the "Low Cartridge" warning cannot be set lower that 10 units. If I get the warning at 5pm, she can easily make it to the morning without a set change. The problem is that I have three kids to get off to school in the morning, plus I have to get myself to work. Chances are high that I won't remember she's low on insulin, which results in her running out at some point in the school day. Can you help a sista out here? If you're marketing to younger users with your low dosing ability, could you give us a 5 units "Low Cartridge" warning?

As you can see from the above list, I'm not asking for the moon. If I added everything I wish for it would surely include having the ability to have my daughter's numbers automatically sent to my phone. If my husband can get up to the minute sports updates, I think I deserve to know her blood sugar on pizza day at school. But I digress.

These are real issues facing real users of your product. Please consider adding these upgrades to your newest Ping model. I'd appreciate the help.

Sincerely,
Pam
mother of Grace, dx 1/23/09

Naked Pancreas, Beantown Style

2010-10-27T15:18:00.006-04:00

I put another post idea on hold so I could jump on the Naked Pancreas bandwagon. Reyna came up with this great idea, and I'm all in...

1. What kind on insulin management mode do you use?
Grace uses the Animas One Touch Ping pump in blue with Inset infusion sites. Right now her infusion sets are green but we have pink on order.

2. How often do you inject/change pump sites?
I change her site every 2-3 days. We went through a period where her site would start to fail right at the 48 hour mark. But now she seems to be able to make it to day three (if I put enough insulin in the cartridge!).

3. What type (s) of insulin do you use?
She's used Humalog since the day she was diagnosed.

4. What are your basal settings?
Right now we're changing some things up. Too many lows. However, Grace just came home from school where she was high all day. So here's her basal rates NOW...3:24pm, 10/27/10. They might be different by tonight...

12M-7A = .2
7A-2P = .175
2P-8P = .15
8P-12M = .25

5. What are your correction factors?
125 around the clock.

6. What are your meal ratios?
Again, things may be changing. I think I need to increase her breakfast ratio due to some consistent mid-morning highs.

12M-6A = 1:80 (honestly, I've never had the need to test this one)
6A-10A = 1:16
10A-8P = 1:35
8P-12M = 1:50

7. What do you do for activity and/or PE?
Like Reyna, PE has been kicking our butts this year. Who knew my daughter would be so into the mile run? She turned in the fastest time for a girl in her class. Though, to be honest, her time is not the numbers I worry about. Grace has had the same issues as Reyna's son where he's high going in to PE (mid 200s) then low after (50s-60s). So I've been experimenting with increasing her breakfast I:C ratio and lowering her basal by 30% from 8am to 12n. So far this seems to be working.

As for soccer, I took the advice of some sage D-mamas out there, and instead of removing her pump completely, we've tried lowering her basal about an hour before through an hour after. This seems to have helped stabilize her a bit.

On nights she swims, we lower her basal by 20% at bedtime for 4 hours. It helps with the delayed lows after exercise.

8. How do you manage Pizza, Macaroni and Cheese, or any other "difficult to manage" foods?
We combo bolus for pizza, 50% now and 50% over 6 hours. (Yes, 6 hours. It truly takes that long for the pizza to get out of dodge.) Because we extend for so long, I up the total she's to receive to where the first 50% is 80% of the original dose. (Did I lose you? I'll give an example. I tell the pump the number of pizza carbs and it tells me to bolus her 1.0 unit total. I would increase her total units to 1.6 so she would receive .8 now and .8 over 6 hours.) Sometimes I up her basal as well. This works pretty well for pizza, but I still can't figure out cheeseburgers or most fried foods!

9. How do you prefer to manage your logs/data?
I use the EZ Manager Max computer system that came with her pump. I love it because it has a report that contains all her blood sugars, her carb and bolus amount, basals, corrections, and set change times. When I'm feeling particularly lost, I just save the report into a .pdf file and email it to our CDE. She then emails back any suggestions.

The Other Side of the Looking Glass

2010-10-25T16:31:00.006-04:00

I know, with pinpoint accuracy, how I felt the moment Grace was diagnosed. I can so clearly recall every emotion coursing through my cells... fear, sadness, panic, disorientation. That was the moment the fog settled on my brain, not to be lifted for six months.

But never once have I thought about how my pediatrician felt. How does it feel to be the one to tell a parent that their child has chronic illness. What is it like to be the one to set a mother on the life-long journey of highs, lows, injections, pumps, carb counting, worry and fear.

This revelation came to me today as I was speaking to a new friend of mine. She was telling me how she likes to volunteer in the school lunchroom so she can spy on her kids. She never tells them when she'll be at school, she just shows up. One time she caught one of her children throwing away her entire lunch. Today she noticed her daughter came late to lunch, thought she must be at the bathroom, then told me about how she seems to go to the bathroom all the time. Sometimes 5 times in 2 hours. She's always going. At first she thought she might have some sort of bladder infection, but soon realized the daughter doesn't just feel like she has to go... she's going a lot. (Starting to sound familiar?)

Then she told me about her father who has diabetes, and that she knows frequent urination is a symptom. At this point I jump in...

"My daughter has Type 1 Diabetes. Does your father have Type 1 or Type 2?"

"The adult kind. The kind where you don't need insulin," she says.

Seriously? It's in her family and she doesn't know what type? I felt the need for a teensy amount of education...

"Type 1 is insulin dependent. Some Type 2s can control it with diet, exercise, oral meds, or some combination of all three. Some, however, still need insulin. If he doesn't need insulin he's Type 2."

She was very receptive to this new info (sometimes I get the blank stare and know I've overstepped, but she was engaged) and she asked how I knew to take Grace to the doctor. I told her about the bed wetting, then probed a bit further...

"Is your daughter thirsty all the time? Has she lost any weight? More cranky than normal? Always hungry, especially after meals? Run down?"

"Yes. Yes. Yes. Yes. Yes."

BIG, FAT ALARM BELLS!

I told her I thought it best that she bring her daughter in to the doctor. I have to admit, though, I felt a bit awkward. I don't want to be an alarmist and tell every mother who has a child with a small bladder to seek medical advice. But more than any other person who's asked me about my daughter's diagnosis, and do they think their child could be at risk, this scenario concerned me. I even went so far as to offer to check her blood sugar and ketones on Grace's meter. To be honest, though, I don't want to be the one to tell a mother their child has diabetes.

I'm glad to be the repository for info but part of me feels horrible. I never thought about how my pediatrician felt when he told me my daughter needed to be rushed to the hospital. How awful to be the person giving the bad news.

I don't know when, or even if, my friend will take her daughter to the doctor. I waited a solid week after a small amount of on-line research indicated that Grace showed all the classic signs of T1D. Denial is powerful. Worst case scenario is that I've alerted someone to the fact that their child may be at risk for T1D. Best case scenario is that I've educated a mother of 3 to the early warning signs, as well as provided a small amount of info regarding her father's condition.

If the worst case is realized, I will be there for my new friend, to help and support and listen. I like that role, and will play it with all the energy in my heart. I don't, for one minute, enjoy being the messenger. And I have a new found empathy for my pediatrician.

Team Andover

2010-10-21T18:32:00.002-04:00

Here's a picture of a few local kids with Diabetes who walked to raise money for JDRF. The group here, we estimate, raised over $40,000 towards a cure. Some walked with their own teams, and a couple banded together under one "town" team.

This is who we're fighting for. My child. Your child. All the children out there with Diabetes. They are our hope, our strength, our future.

Dehydrated, NOT Diabetic

2010-10-18T16:00:00.005-04:00

I did it. I pricked my poor, sick, 5 year old's finger to check his blood sugar. I've only done it once before, right after Grace's diagnosis. When he realized it hurt he didn't want any part of doing it again.

But yesterday he started throwing up. And kept asking for water. And he still wears a pull-up at night.

So I checked him. My husband held him down, with him screaming and crying, and I pricked his tender little finger.

Fasting (almost 24 hours without food) blood glucose = 68.

Grace's Meme

2010-10-16T11:36:00.005-04:00

I love reading the answers other kiddos give for this meme (I think Elise's were my fav so far - just too cute to hear a 3 year old's answers), and I wanted to see how Grace would answer. So here it is...

What is your name?
Why do you need to know this? Grace.

How old are you?
Nine

When were you diagnosed with diabetes?
January 26... 2008? (She wasn't sure of the year... it was 2009)

Do you remember what happened when you were diagnosed or how you felt?
I was cranky, really, really thirsty, had to go to the bathroom a lot.

Do finger pokes or shots [or site insertions/infusion set changes] hurt?
Not anymore.

What is a high number?
Above 180

What is a low number?
Below 70

What does low blood sugar feel like?
Um... I'm shaky. Sometimes I feel a little weak.

What’s your favorite way to treat a low?
Usually glucose tablets.

How do you feel when your blood sugar level is high?
I don't really want to do anything, or I go into my own personal world and sit on the couch.

What’s the best thing about having diabetes?
You get to have candy when some kids don't

What’s the worst thing about having diabetes?
Getting finger pricks and sitting out on activities when my blood sugar's low.

Do you worry much about diabetes?
No, not really.

If one of your friends were diagnosed with diabetes, what would you say to that friend?
It's okay, it's not that difficult when you get used to it.

What’s your favorite food?
What do you mean... in general? I don't really have one.

What’s your favorite snack?
(Pause, this took a lot of thinking...) Lays potato chips

What’s your favorite low-carb food?
Smart Food Popcorn

Do you know what a blog is?
Kind of

Do you know that I blog about diabetes?
Yes

Do you care?
No, not really

Why do you think I blog about diabetes?
To share your experiences and to talk to some mom's of kids with diabetes and learn some new stuff.

What’s your biggest wish?
A cure

Who’s your best friend?
(paused, until I told her she could name more than one) CG, S, SM

What do you like about him/her/them?
They're nice, friendly, they don't tease me about having diabetes

What’s your favorite thing to do?
Play soccer or swim

Do you have a hero?
Yes. (She wouldn't say more. I asked her if she wanted to tell me who her hero is, she blushed and said, "You." )

What do you want to be when you grow up?
A teacher

Who’s your favorite person in the whole wide world?
Probably you and Daddy

Are you afraid of anything?
Yes. (What?) I am afraid of the dark. Certain times I get a little freaked out if I'm alone.

Fill in the blank. (Your name) is___________. There is no right or wrong answer.
Cool

Wedding Anniversary - D Style

2010-10-13T23:01:00.002-04:00

My husband and I have been married 14 years. We've been "together" almost 21 years - yes, I was merely a baby when we met. (Actually we met in college, but that would make me...how old?)

To celebrate our anniversary this year, we decided to go back to our roots. Back to when we first fell in love. Back to how we used to have fun before kids, and mortgages, and jobs, and diabetes and stress. Yep... we went to a sports bar to watch the games, drink beer and eat chicken wings. (We went to school in upstate NY, awfully close to Buffalo... need I say more!)

The best part was that all the kids went to Grandma's house for the night. Football, beer, wings, NO KIDS - that's my kind of night!

But D being ever present, even on my anniversary, we ran into a bit of a snafu. 20 minutes after arriving at the restaurant, we get a call. It's Grandma. Grace's infusion site ripped out.

Here I should mention that Grandma's house is almost an hour away.

So picture me, in the parking lot of the bar (lets just admit that it was more bar than restaurant), talking my daughter and mother-in-law through a complete site change over the phone. Grace has never done a site change on her own, and Grandma has had limited experience with her pump.

And they did GREAT! I was on the phone for at least 20 minutes, but they rocked it! I remember how nervous I was the first time I put a site on Grace - I was sweating, shaking, trying not to cry, all the while attempting to look cool and collected for my freaked out daughter/patient.

But now Grace has watched me do it so often she easily handled changing the cartridge and tubing and prepping the injector-thingy. Then Grandma stepped in and actually did the "injecting" onto Grace's bum (only site we use so far).

It was a great anniversary present! We had a problem but no one panicked and we all got it fixed. I am so proud of Grace, and Grandma too! What a gift!

The Post I'm Embarrassed to Publish

2010-10-12T15:37:00.008-04:00

Grace has finally come out of her honeymoon period (the time after diagnosis when her pancreas still intermittently works. This time frame can last 6 months to a couple of years.) Now her body relys only on the insulin WE provide it to function.

As I see it, the honeymoon phase has some pros and some cons. The pros include needing less insulin to get through the day (her pancreas still provides the rest), being able to "guestimate" carbs more, since her body tended to pick up the slack where I guessed wrong, and periods of slightly more stable numbers (or so it seemed to me) due to her body's underlying output of insulin to smooth out the edges.

And then there's the one that I'm embarrassed to admit. I had the feeling that since Grace was on such a low daily dose of insulin, somehow that meant that she didn't "have it that bad" or at least, "not as bad as others." Believe me when I tell you, I KNOW how ridiculous that sounds. And my brain always knew how stupid it was to think that. But I think it was my brain's way of slowly accepting her diagnosis.

The cons of honeymooning mostly have to do with wack-a-doo numbers resulting from an unexpected surge of pancreas-produced insulin. Picture me bolusing Grace for dinner, and then her body kicking out insulin as well.

So here we are, a year and a half after diagnosis, fully out of her honeymoon. Grace is 100% at the mercy of the insulin her pump provides. I say that because I now know there's pros and cons to being OUT of her honeymoon. Take today, for example. Grace was high at snack (217). She was bolused to correct her high as well as to cover the food she ate. Then she went to PE, where they've been practicing for the mile run by running and/or walking around the track. Now, get that they've been practicing for the mile run since the beginning of the year, and I've never seen a correlation to low blood sugars after. Today, however, when she felt low after PE and went to the nurse she was 29.

29!

Recheck - 32. The worst part is that she says she felt low, but not THAT low. Three glucose tabs and a healthy rebound output of glucose from her liver brought her up to 229 fifteen minutes later. She's been fine the rest of the day, but I realized that she never went low like this when she was honeymooning. Her body's natural output of insulin would shut off in situations like this preventing her from going too low. Now there's nothing more to shut off. If she's low and going lower, her pump still pumps out insulin it thinks she needs, thus taking her even lower.

To actually type the words, "it never occurred to me to lower her basal for a mile run," is humiliating, to say the least. If I was with her and saw that she was about to run/walk a mile I would've definitely lowered her basal. BUT THIS HAS NEVER HAPPENED AFTER P.E. CLASS! After she ran the mile last year she went right in for a blood sugar check and was fine. That's why I blame coming out of her honeymoon.

In a year and a half, I've never had to lower her basal for PE class. I guess I need to revisit that. Do you lower your child's basal for PE? By how much? How do I go about instructing the school nurse? Should I just cut back on how much she's bolused for snack?

Can you help out an embarrassed D-mama?

Little Sister

2010-10-07T18:10:00.006-04:00

George, over at Ninjabetic, has once again proposed that today be No D-Day. That is, we, the Diabetes Online Community, should post whatever we want today, as long as it's NOT about Diabetes. So in honor of No D-Day... I introduce you to Little Sister.

Little Sister is the absolute apple of my eye. Born just shy of two years after Grace, she came out smiling and hasn't stopped ever since. At 3 months she was sleeping 14 hours a night - 7p to 9a. She potty trained herself before she was two. I honestly can't remember her crying at all when she was a baby. She'd sleep, wake up, coo, eat, coo, and go back to sleep.

Little Sister is a natural athlete. She's good a just about anything she tries, though her current passions are swimming and soccer. She wants to grow up to be Michael Phelps, but faster. Or maybe Mia Hamm.

She's very creative and artistic. She can sit at my counter and craft for hours, especially if it's something she can be-dazzle. She loves to paint and draw, but doesn't really find school itself all that interesting.

Her latest obsession is fashion. She's 7 going on 17. She actually said to me, "Mama, I can't wait until I'm 17 so I can drive and date!" I'm going to have my hands full with her. Call me crazy, but she seems the type to sneak out windows when she's grounded. She already loves skinny jeans and halter tops. And she ALWAYS wears a headband.

Her true nature is someone always looking for fun. The only time I have trouble with her, other than over her clothing choices, are when we need to transition away from some fun activity. Leaving playdates are tough for her. Going to bed seems to mean, "hey, it's time to sit up and talk with my big sister until I get yelled at."

I could not love anyone more than I love Little Sister. She lights up the room, and she lights up my life. (Very Debbie Boone, I know.)

Walk Pictures!

2010-10-05T15:41:00.012-04:00

I think I'm finally rested enough to post about our AWESOME JDRF Walk For a Cure on Saturday. I'm one tired mama-pancreas, but we had such a great day.

Saturday was terrific! A gigantic THANK YOU to all who joined Team Grace's Aces. We had about 45 walkers who came from all over the northeast - from Maine to New Jersey. Everyone was rewarded with great weather, which was in stark contrast to last year's monsoon. (I was more than concerned when it rained all last week. But we woke on Saturday to sunshine and blue skies.) So far we've raised just over $7,000 and hope to get a little more in.

To all who walked, donated, or lovingly did both, thank you from the bottom of my heart. Your love and support means the world to me and my family. Every dollar you gave brings us one step closer to a cure for Type 1 Diabetes.

Grace's Aces, before we left the house...

...and after we arrived in Boston.

Our team shirts

Little Brother catchin' a ride on Daddy

Stop to check blood sugar. 48! Forgot to lower basal for 3 mile walk.

Gotta hate the no-symptom thing!

Hooray for family... all the way from NJ!

Even Molly, the dog, joined the team

2010Walk for a Cure, Boston

2010-10-02T21:39:00.003-04:00

Could anything else go wrong?

2010-09-29T15:18:00.002-04:00

Yesterday we had quite a day here. It was one of those days when you truly don't see the tsunami coming until you're already ankle deep in poo.

The day started like any other day, other than that I failed to notice I sent Grace to school with only 5 units of insulin in her pump. NORMALLY, this wouldn't be a problem. She never needs more than 2 units to cover lunch, and her daytime basal rate is only set at 0.2 units per hour, so 5 units SHOULD get her though the school day.

BUT...

While at the nurse for her bg check before morning snack, her pump alarm went off.

"Why?" you ask.

Because for some reason, her pump said it needed to be primed. For those non pumpers out there, 'priming' is the act of sending the insulin through the 23 inch (centimeter? I never measured... I just know it's 23 something) tubing that connects the pump to the infusion site (the part attached to your child's body). You know it's fully primed when a couple drops of insulin come out the other end. Usually you should only need to prime your pump when inserting a freshly filled cartridge full of insulin. We have occasionally had to re-prime her pump, mostly after it's been suspended for a while such as during swimming. It doesn't happened often, but often enough that Grace knew what to do.

Almost.

See, she knew what buttons to push to prime the pump, but forgot one crucial step... disconnecting herself from the pump.

So...

she primed the pump, without disconnecting the tubing from her infusion site, which pushed an unknown amount of the existing insulin already in the tubing, in to my daughter.

It was at this point that I got my FIRST call from the nurse. She didn't yet realize anything was amiss, but was just calling to let me know what was going on.

HELLO! BIG PROBLEM HERE!

How much insulin did she give herself? How low will she go, and when? The good was that she had some insulin left in her pump, so she didn't dump the entire amount into herself. I told the nurse to check her every 30 minutes until she seemed out of the woods.

30 minutes - 114
60 minutes - 59

It's now lunchtime, so the nurse corrects her low with a juice, and feeds her lunch in her office (with all the checking Grace missed lunch). She chose to bolus her after lunch instead of before like normal, due to the potential that she was still falling (kudos to that idea!).

After lunch blood sugar - 214

Can you say REBOUND! It's common for lows to be followed by highs, as a diabetics body is trying to compensate for the low by releasing stores of glucose.

So a bg of 214 + 52 carbs for lunch = 1.5 units of insulin needed.

But by this point, Grace's pump doesn't have that much insulin left.

Here's where I got my SECOND call from the nurse. Or I would have, if I had my phone with me. (Stupid D momma moment - leaving my phone when I know my daughter might need me.) I left it on my desk so I didn't know she was trying to reach me. Until a coworker came running across the courtyard to tell me that Grace's school nurse had called the school where I work, and all of the sudden the entire school was trying to find me.

Picture me, sprinting down the hallway, trying not to knock over innocent schoolchildren on my way.

Long story, I know, but we're getting there... still with me?...

So, I talk to the nurse, and we decide to give Grace all she has left, .95 units. This leaves her with a beeping, angry-that-it's-empty pump, and not enough insulin on board to cover lunch and bring down her high number. I tell the nurse to disconnect Grace and keep the pump in her office, and that I'll be there soon to change her site.

Here's another stupid D momma moment... Grace's school nurse has an insulin pen for emergencies, but NO NEEDLES! Our CDE forgot to call in the needle prescription, and I haven't called to take care of it. Never once did this happen last year, but Murphy's Law...

So, I leave my job, rush home to get the vial of insulin (I always carry supplies for a set change, but not insulin, in my purse), go to Grace's school, and do a full site change. Now she's 220, so I bolus her .5 units to cover what she missed at lunch, and hoped for the best. Then go back to work, to finish the day.

2:30 - 194

Coming down, crisis solved, stressed out D momma!

My Peace

2010-09-21T23:44:00.003-04:00

I consider myself an introverted person. I can put on a good face, but my true nature is to be more internal than external. I prefer one-on-one friendships and have never been the kind of person who has a gaggle of people around. I enjoy getting together with small groups of friends, but equally enjoy when my husband is away on business, and after I put the kids to bed I have the house to myself. Quiet. Peaceful. Happy.

So true to form, when D entered my household I withdrew. I went inside my head and swirled around there for quite a while. When people would ask how I was holding up, I simply put on the 'everything's fine' face and said what they wanted to hear anyway. "Grace is doing great... we caught it so early she never really felt sick... things are good... lots to learn, but we're getting there..." Blah blah blah...

How could I possibly explain all that was going on in my head? Carbs, bolus, basals, insulin:carb ratios, sensitivity factors, endocrinologists (who even knew what that was before D?) hypoglycemia, hyperglycemia, complications, wasn't this what the girl from Steel Magnolia's died from?, amputation, kidney failure, blindness, blood glucose, A1c, check, recheck, exhaustion, fear, loneliness, sadness, anger, on and on and on. It took about 6 months to come out of that fog.

But I think I really found some sense of internal peace when, about a year after Grace's dx, I began blogging, and telling my journey. I can read other people's stories, so similar to my own, and comment when I feel I have something to say or add. And I can truly lay out all that's swirling inside my head, and that feels great. What do I get in return? Absolute acceptance, and a sense that I'm not alone. And it's not just the wonderful D-OC, it's the chance to get all the chaos out of my head. I can stop the swirling (okay, maybe just slow it down some) and refocus on whatever lays in front of me. That's why I often write late at night. It slows my brain and once it's out there I can truly rest.

At least until the 2am check.

What Am I?

2010-09-19T22:14:00.004-04:00

What's it like to grow up with diabetes? I have no idea, and will never know.

For Grace, it's part of who she is, and she'll never know anything different. She won't know what it's like to grow up WITHOUT diabetes.

But how, exactly, will it impact the person she'll become? If she grows up to be good at math, will I attribute that to the fact that I'm good at math, or the fact that she's immersed in numbers every day, from carb counting to insulin units to basal rates and insulin sensitivity factors.

If, when she's an adult, she wants to become a nurse or doctor, will it be because of her grandmother's influence, or will I think of all the time she's spent at hospitals and doctor's offices.

I don't know. No one knows what events will shape their children and mold them into adults. But how can diabetes NOT play a factor?

Almost every time I check Grace's blood sugar, she asks me what her number is. Why? Is she making mental notes of how she feels at certain numbers? Or is she judging herself by how "good" or "bad" her number is? (For the record, we don't refer to her numbers as good or bad. If she's not in range we try to figure out why, and treat her. But I will admit to not always doing a great job at masking my frustration when I can't seem to get her back in range.) Her exact words are, "What am I?" Does she define herself by what her number is? I hope not.

I need to have a talk with her to make sure she understands that she is not her numbers. In range doesn't mean you're a better person. And my frustration at high or low numbers isn't frustration with her, it's actually with myself. I get mad at myself for not anticipating whatever event brought us to that out of range number. Diabetes will always play a part in Grace's life, but I want it to be just that... a part, not the whole. It may influence the person she becomes, but I don't want it to determine the paths she takes.

Does her nine year old brain understand this yet? I think I need to make sure.

Just like Kerri, I don't want diabetes to define Grace, but maybe someday it will help to explain who she has become.

Type 4?

2010-09-15T18:03:00.004-04:00

I came into this new school year expecting lots of highs, due to Grace's body adjusting to her new routine of sitting most of the day instead of running around (like she did all summer). Is that what we've had?

NOPE!

Lows, lows, lows.

The kind of lows that don't come up after the first round of glucose tabs.

The kind of lows where Grace misses most of her math lesson because she's at the nurse waiting, waiting, waiting for her number to come up.

The kind of low where the school nurse won't let her on the bus at dismissal, and I have to go pick all three kids up at school. Twice already in 9 days. (Our policy is that if Grace is below 70 at dismissal, she's to be treated for the low, then I'm called to pick her up. I don't want her on the bus that low.)

I think Grace may have some previously unidentified form of wack-a-doo diabetes. All summer we fought highs on days when she was swimming from here to Rhode Island! She'd get more exercise than ever, and still we'd fight numbers in the 300s.

Now, on non-PE days, when she's doing no more than walking around the school a little, she's low. Not crazy, scary, 40s low. Just low. High 60s that are persistent buggers. And lots of 70s, which, to me, still seem kind of low for school.

I've scaled back her breakfast insulin:carb ratio. Now I think we may need to tweak down her basal rate.

Hmmm, lets see... high when she exercises and low when she's sedentary. I vote for Wack-a-Doo Diabetes.

Race to the Top

2010-09-14T22:42:00.002-04:00

Grace is in her 3rd week of school, soccer's started, swimming's started (again), our JDRF walk is in 3 weeks, and I've just starting my fundraising! AACK!

To top it all off, fundraising in my family has become somewhat of a competition. My husband and I have set the same goals for ourselves individually, and it seems to have become a race to the top.

And he's kicking my butt.

So I'm sitting here, at my computer, at 10:57 at night, sending out emails to friends and family, pleading for help in finding a cure.

I'm tired, I want to go to bed, my husband's teasing me for my lackluster efforts, I want a cure for diabetes, and I WANT TO BEAT MY HUSBAND'S FUNDRAISING TOTAL!

9/11/01

2010-09-11T10:15:00.003-04:00

Grace was 3 months old on September 11, 2001. I had taken her down to my parent's house in New Jersey, while my husband stayed home for work.

My parents had woken early that morning and gone to the gym. My post-pregnancy body only craved sleep, so the gym wasn't an option for me.

Grace was in a routine where she'd wake at 6am, nurse, then be back to sleep by 7am. So, I would wake at 6, feed her, and go back to sleep as well. (Oh, the days of only have one child!)

I heard the phone ring, but didn't answer it. From the floor below, I could hear my husband leaving a message, but couldn't discern what he was saying. Back to sleep.

My parents came home around 9am. I woke when they walked in the house. Grace was still sleeping, and wouldn't wake for another hour. When I came downstairs, I remembered the message my husband left, and we listened to it. Something about a crash at the World Trade Towers?

I turned the TV on and immediately saw the images of the pentagon. Wait - hadn't Chris said it was the WTC? What's going on?'

Then I saw it... split screen. The news station showed both images at once, the WTC and the Pentagon. Burning. I sat, dumbfounded, on the couch. We, the entire nation, were mesmerized by what we saw unfolding.

Then Grace woke up. I scooped her up, brought her downstairs, sat on the sofa, and cried. I cried for the world I had brought my perfect little daughter into. I cried for all those who would never hold their babies again. I cried for all the babies who lost a parent.

In my own small world, Grace's diagnosis 7 years later was devastating. But I'm fully capable of perspective. I still have her. She's alive, healthy, thriving. As heart wrenching as it was, it's nothing compared to the sacrifice that so many paid that day.

In our home, we will never forget those that gave their lives that day, or those that continue to fight for our freedom. You are true heroes.

God Bless America.

Health vs. Happiness

2010-09-09T21:52:00.002-04:00

Every day, I walk a fine line. On one side of that line is my daughter's health. On the other side, her happiness.

My ultimate goal is to make the line disappear. If not for me, at least for her. I don't want her to see me struggle with deciding weather to allow her to have the birthday cake when she's already 252. I try to make that part seamless; I handle it for her so she can be a kid and enjoy the party. Happiness.

But sometimes I can't hide from the line. Tonight before dinner Grace was 297, with no real explanation. Since we couldn't immediately attribute it to something she ate, I wanted to check her blood ketones. Ketones could indicate her site had gone bad, and we'd bolus her with an injection to make sure she got all the insulin she needed to cover dinner and bring her numbers down.

But here's the rub... she wanted no part of checking her ketones. We'd already poked her once, and she did NOT want another finger prick. She ran out of the room crying hysterically, "No, no, no!" I knew that she was tired, hungry, and high, all colliding into a perfect storm of a temper tantrum. What she needed was insulin and food. But I didn't want her to eat until I could confirm that her site was still effectively delivering life-saving insulin.

So there she was, hiding behind the sofa crying, and I felt like I had to pole-vault over that damned health vs. happiness line. She was sad, and the only thing I could do was try to get her to calm down and convince her that I needed to check her ketones. No way around it. Health had to trump happiness in that moment.

And it sucked.

It sucks every every minute of every hour of every day. Because that's how often I'm faced with walking the line. Her health or her happiness.

Don't get me wrong, she doesn't often complain like that. She goes with the flow, checks when I ask her to, and is very vigilant when she's not with me (say, at a friend's house). But that line is still there.

It's there when she has to eat lunch in the nurse's office because she was low, had to wait for her blood sugar to come up, and missed lunch.

It's there when the gas station attendant hands me 3 lollipops for the kids, but I ask Grace to save hers for when she's low.

And it's there when I have to check her ketones, even when she doesn't want me to.

Health versus happiness. It's a fine line to walk every day.

JDRF Walk Video

2010-09-05T22:00:00.002-04:00

Here it is! The official unveiling of our 2010 JDRF Walk to Cure Diabetes Video.
(it takes a few seconds to upload... it'll be just below soon...)

Make an on-line slide show at www.OneTrueMedia.com

Dear Diabetes Gods

2010-08-31T22:39:00.005-04:00

I probably don't say it enough, but Thank You.

Let's be honest, lately you haven't given me very much to be thankful for.

Do you expect a thank you for the 39 you gave my daughter this summer? Oh that's right, let's not forget that you barely gave her any symptoms. 39 with only slight shakes. No, I won't thank you for that. Keep that one for yourself next time.

I'm also not very thankful for the 504 we saw. Really?!? I would have gotten the hint with a much more subtle number in the 300s. You had to ratchet it up another 200 points, huh? Why? Is it fun for you to see my daughter nauseous and dehydrated? It's not fun for me. Or her, for that matter. So you can shove your 504 up your ...!

But I digress.

I DO want to thank you for Grace's blood sugar numbers over the past two days. Maybe you didn't realize it, but I've had to work yesterday and today, and Grace hasn't started school yet. (If you think you're going to get me to divulge when her first day of school is, you're nuts! That's a secret, and we're going to try to slip that one right by you.)

Grace and her siblings spent yesterday at Grandma's house and today with a family friend. Were you sleeping, oh Diabetes gods? Because if you were on the job, surely you would've given Grace the kind of numbers that would make me regret ever going back to work. But you didn't. Miraculously, she did great. Through swimming, biking, snacking, and people in charge who can only estimate carbs without a scale or much experience.

Have you been on vacation? After a long, exhausting summer of chasing Grace around, giving her lows and highs, sleepless nights for Daddy and me, gallons and gallons of juice, followed by stark increases in insulin use, you seem to be off your game. Maybe tired?

Are you feeling okay? I know you'll be back on your feet soon enough. You'll be back with a vengeance, wreaking havoc in my house.

But until then, thank you for giving us all a break. Who knows, you may decide to be spiteful, and throw my appreciation in my face with some wack-a-doo numbers tonight. But I won't be mad. This summer you taught me to appreciate ever in-range number you give my daughter. You gave me two days that I really needed.

Thank you.

PS - I still hate you. You suck.

Musically Challenged

2010-08-28T22:56:00.002-04:00

I'm working on my JDRF Walk video (finally) and I'm stumped. Does anyone know any good songs to run as the music? Last year we used the Jonas Brothers "A Little Bit Longer." This year I'm thinking about Leann Womack's "I Hope You Dance." So far the video's running a bit long, so some songs such as Rascall Flatt's "My Wish" are too short.

Are there any other songs out there to consider?

Good Riddance to the Yuck

2010-08-25T14:01:00.005-04:00

I blog for lots of reasons. I enjoy writing, it's an emotional release, and I totally love the comradary from my fellow D moms (and dads - no disrespect!)

I admit to finding comfort in reading about other people's crazy attempts at taming this D beast. Sometimes we succeed, but more often than not we're all left wondering, WTF? Not one of us is the perfect pancreas. We weren't meant to be. A pancreas is a pancreas, and all the rest of us are just doing our best to keep up.

So, with that in mind, I offer you, my blog readers, a snapshot of our summer in numbers:

It may be a little hard to read. (Yes, it's a photo of my computer screen. If you think you're technologically challenged, I bet I'm worse. Case in point - my beloved blue painters tape stuck to my screen to block out Grace's full name. Sad, but true.)

You don't need to see the exact numbers to be able to see what's going on. Green = in range, red = high, blue = low.

If I were to show you a pie chart, it would show about half the circle in green. Yep, only HALF the time this summer did my little girl spend in range. Most of the lows are in the 40s and most of the highs sit comfortably in the 300s. (Yeah, that one's over 500. I see it.)

So, though this is a stressful time in the life of at least one D-mama, this being back to school season, let's all agree to take yesterday's crap and put it behind us. There'll be more crap waiting tomorrow, so why worry about the past? I refuse to carry the guilt of my Summer of Yuck Numbers. Onward and upward. Today is a new day.

Ok, enough with the catch-phrases. I hope this example of how none of us is perfect motivates you to see that tomorrow is just a day away. (Sorry. Couldn't help myself)

All my "What ifs...?"

2010-08-24T15:24:00.004-04:00

Some big changes happening around these parts. The biggest (other than school starting) is that I got a job! With Little Brother heading off to kindergarten, I now have three kids in school full time! Woohoo!

But...

Now I won't be available to drop everything and run to Grace's school if she needs me. I'm working at a different elementary school than my kids attend, but within the same district. (Our district has a policy against hiring at the school where your children attend.) I'll have the same hours as my kids - I'll get them on the bus in the morning and be home before them in the afternoon. But it's those pesky hours in between that I'm concerned about.

I love, love, LOVE our school nurse and have all the faith in the world in her ability to take care of Grace. But I'm still scared. What if...?

And then there's the benefits question. My family is now covered under my husband's plan at work. He works at a small business and has to cover a large chunk of the premiums himself, and they keep going up every year. Last year they changed health insurance providers to save some money. He's already been told to expect large increases this year.

I'm eligible to get health insurance through my new job. We'd be saving money, but it means we'd have to change insurance for the second time this year. (I know, in the big picture not a problem, it's just a pain with all Grace's paperwork.) My bigger fear is, what if I'm not hired again next year (I'm in a somewhat flexible position that may, or may not, be open next year.) If we commit to this insurance, and my husband drops his plan, what happens if in June I find out my services won't be needed next year? We'd have to wait until open enrollment for my husband to join with his company again. That would be a lapse of about 4 months.

Chances are, I'll have my job for as long as I want it. I'm just feeling a tad, "glass is half empty" about this. I'm nervous about something that probably won't even happen, 10 months from now! And I'm nervous about school starting and me missing Little Brother's first day. And I'm nervous about not being available for Grace.

Way to many, "What if...?"s

How do you working moms do it?

The Switch

2010-08-23T11:04:00.006-04:00

We have arrived.

It's the last week of summer vacation. Yesterday we went school supply shopping. All three of my kids are decked out in new backpacks and sneakers. Fresh hair cuts have taken away the too long, sun bleached, slightly chlorine green look we sported the past two months.

Their teacher assignments arrived last week, so now instead of aimlessly thinking of upcoming school days they can put a face and classroom in the picture.

My baby is off to kindergarten. In all the preparations for back to school, which means a lot to a D family, I don't want him to be lost in the shuffle. I have a meeting set for Wednesday with Grace's teacher, assistant, school nurse, head of nursing for the district, principle, and gym teacher. There's a lot to do to send her back to school and have her cared for properly for 6 hours every day. Supplies to bring in, refresher courses in glucagon and insulin pen usage, instructions on how, when, and why to correct highs and lows. When they need to contact me, and when they should treat her and send her back to class.

It's a lot, and it's scary, and I'm worried for her.

But there's also Little Brother. He's young for his grade, so I'm worried for him, too. Is he ready? Will it be too much for him?

And what about Little Sister? She's smart, personable, and has lots of friends, so I'm not concerned with her starting school. But should I be? I don't want something with her to fall through the cracks while I'm busy stressing over Grace and Little Brother.

It's raining today, and the switch in my brain has flipped from summer to school. The worry has started.

Summer's over.

The Endo Awards!

2010-08-20T22:28:00.004-04:00

Ladies and Gentlemen, it's time again to gather round to watch the ever entertaining...

"Endo Awards!"

Most Surprising Moment: Grace grew an inch in three months!
May explain some of her wacky numbers. Growth hormones interfere with insulin absorption. And we finally have proof that our peanut of a girl actually grows!

Most Anticipated Announcement: She's out of her honeymoon!
Grace is now using about the average amount of insulin per day that a 9 year old of her size uses. She's out of her honeymoon, so her pancreas has finally crapped out.

Most Laughable Moment: Grace's A1c is 6.6!
Thus proving that a number is just a number. She's had so many highs, and this number just shows that she's had a lot of lows that we haven't caught. An A1c is basically an average of her blood sugar numbers for 3 months. With all the highs we've seen, they must be balanced out with a ton of lows to have such a low A1c. So even though it's a low number, it doesn't mean squat. (Well, it actually means that we've done a piss-poor job catching lows.)

Biggest Stab in the Dark: Our Pump Adjustments!
Where, exactly, do you start when every single number, at every hour of the day, is out of whack? 10am one day she's 89, the next day at 10am she 396. Multiply that by the entire summer, and you see the conundrum that my CDE was in. We're starting slow - lower her daytime basal to get rid of those unsightly lows, and raise her Insulin Sensitivity Factor so when we do correct a high it's more effective. (In the past, when we correct a high she doesn't come down right away. She needs more insulin to bring her down.) Next week I'll email her Grace's numbers and we'll make more adjustments. To be followed the NEXT week by school starting, which brings us back to square one.

Best New Technology: The Insulin Pen!
Yes, ladies and gentlemen, we are insulin pen virgins. Never had one, never been offered one, never knew how to use one. Now, we left the endo with a prescription for 5 pens - one being designated for school. Seems kinda cool. Love me some new gadgets.

Most Exciting Prospect on the Horizon: The Masked CGM Program!
Joslin has a program where Grace can wear a Continuous Glucose Monitor for 3 days. We don't see the numbers, and treat her as we normally would. After the three days, we send the monitor back to Joslin, where the data is extrapolated. From that we can see if how we're treating her is effective, and where areas may be which we can alter our plan. Such as, should we bolus her right before dinner or 20 minutes before? How long does insulin stay active in her body? How the hell do I bolus for french fries?

Best, by far, Moment of the Day: Meeting a Wicked Sweet Reader!
Yes, a real, live reader! Sitting in the play room at Joslin, a beautiful woman came up to me and asked me if I wrote a diabetes blog. "Excuse me?" was all I could think of to say. "Do you write a diabetes blog? Is that Grace?" This wonderful mom recognised my daughter from this very blog. Unfortunately, at that moment, Grace was called back for her blood work and vitals, after which I was immediately ushered in to meet with my CDE. When I came back to the playroom she was gone. So, to the lovely woman in the Joslin playroom... thank you for reading my blog! Please contact me so we can talk. I'd love to get to know you and possibly get together!

Thank you, one and all, for attending this year's Endo Awards! I hope you've had as much fun as we've had. See you again in three months!

Facing the Music

2010-08-19T11:18:00.002-04:00

Today's the day.

Today, I will come face to face with just how poorly we've managed Grace's diabetes this summer.

Today, we go to Joslin for her quarterly Endocrinologist appointment.

And we'll get her A1c.

(For those who don't know, an A1c blood test measures, in lay-terms, what Grace's blood glucose levels have been for about 3 months. This test will take into account all the highs she's had when it took 8 hours to bring her down, as well as hidden lows we may have missed.)

From what I've seen on-line, some people have to wait to get their results in the mail. We get ours in 20 minutes, before we leave the office. So I'll get to discuss the number with our CDE (Certified Diabetes Educator).

Here's the breakdown:

So if your A1c comes back at 8%, it means your average blood glucose level for the past 3 months is 183. (For the record, when I was looking for graphs, I noticed that there are several versions out there, with different numbers assigned different values. If you're a PWD, please go by your Endo's numbers.)

A person without diabetes will have an A1c between 4 and 6%. For a child Grace's age, our Endo would like her below 8%. In the past, she's done pretty well.

This time? Crap shoot.

Today we face the music.

Hi (High) Fry

2010-08-17T19:27:00.004-04:00

One of these days I'm going to stop sabotaging myself.

Any day now, I'm going to take a day full of beautifully in-range blood sugar numbers, and just let them ride into the sunset, happily ever after.

Pretty soon I'm going to be able to tell my daughter "No" to those tempting, evil, BG spike in a box, tubes of greasy wonderfulness... French Fries!

I promise that the next time we're hanging out with friends, and Grace's blood sugar is holding steady at 89 after swimming, and my friend says, "Does anyone want my fries? I'm all done," I promise, promise, PROMISE I won't let Grace have 4. Or maybe I'll just try bolusing for them. Go figure.

Because, it seems, that 4 french fries = a blood sugar reading 1 hour later of 211.

211!

Don't get me wrong... In my summer of sh#@ numbers, 211 actually isn't that bad. It's downright admirable, compared to where we've been the past 3 months. But, my friends, lately things seem to be almost, maybe, about to be, on the road to thinking about stabilizing. And man does it ever piss me off when I go and do something stupid like giving her french fries and not bolusing.

Next time, I'll be more careful. Next time I'll remember that, even though she's a kid first and a diabetic second, I need to be more vigilant.

I HATE when I screw up.

We Are the Champions...

2010-08-16T10:09:00.005-04:00

Swim team championships were on Saturday. This marked the end of an exciting, but tiring, summer swim season. Every day we were at the pool by 9:30, with practices going until 11. It was all worth it, as our swim club took home the Championship victory for the third year in a row!

Grace starting her freestyle race

All three of my kids swam freestyle and backstroke. Yes, even Little Brother, who's only 5. The '6 and unders' swim half the length of the pool, 12.5 yards. The best moment of the day for me was watching my son swim backstroke. At the beginning of the summer he couldn't do it at all. He'd sink like a rock. Now what he does more resembles a drowning child bobbing up for one last gasp of breath, than it does swimming. But put enough of those bobs back to back, and all of the sudden he's moving backwards down the pool! And he refuses help from the coach in the pool (that age has a coach for each lane to help when needed). He's so proud of himself that he can now do it.

In his backstroke race he was in lane 6 of 6. The gun fires, and the boys take off. By the time all the other boys had finished the race, my son was only about halfway done (apparently, the "almost drowning" method isn't that fast). At this point the entire pool deck starts shouting his name and cheering him on. It was great! There I am, crying and cheering, and my son realizes everyone's rooting for him. So what does he do? Starts laughing! Now he's bobbing and gasping, and flailing his arms, and swimming... and laughing! Not helping him go faster, but it was hilarious to watch. When he finally finished the crowd roared, and the first thing he said was, "Did I win?"

Little brother before his backstroke race

There's not much to say about Little Sister, other than that she's a Rock Star Swimmer! Placed second in both her heats, even though she's swimming against girls one year older. She's a natural in the water. If she chooses to stick with it, swimming might be her thing.

Little Sis on the blocks

As for Grace, she did great in her races. Her blood sugars were ok. Adrenaline blocks the absorption of insulin, so she always runs high on race day, but it's hard to correct because once the adrenaline is gone we don't want her to crash. She was in the mid 200s when I was able to correct her about an hour before her first race, then catch her coming down at 87 right after in time for a snack.

The coolest thing was that we saw a counselor from Grace's camp at the race! She swims for another team, and Grace noticed her right away. She told me she could see she wasn't wearing a pump, but could see the infusion site bump under her suit. So we went over and said hi! How cool is that!

I've felt so busy this summer, and I'm regretfully behind on my blog correspondence. I have a lot going on, that I'll elaborate on soon. But I'm still here - reading all your blogs and comments. I hope you're all well as summer is winding down. Have a great Monday!

Food Police?

2010-08-12T21:29:00.003-04:00

Grace has been diagnosed with Type 1 Diabetes for a year and a half. In that time I can honestly say I've never encountered the Food Police. You know, those people out there who think they know more than you about what your child can or can not eat.

I've had lots of people ask WHAT she can eat. Most admitting that they thought anything with high sugar is a no-no. Some people assume she CAN'T eat certain things, and ask how we deal with those situations.

Sometimes, depending on my mood at the time, I go into a lengthy explanation and mini crash-course on diabetes nutrition and management. The basics: food raises blood sugar, insulin and exercise lowers it, count carbs, insulin delivered through pump around the clock as well as at meals or other times when necessary, yada, yada, yada.

It's about this time I usually sense I've lost my audience, their eyes glazed over with info overload, and I quit talking about the stuff that others don't realize I think about ALL. THE. TIME.

Other times I simply say, "Yeah, she can eat that. She'll be fine."

But I've never had someone come up to me (or her, that I've noticed) and question what and why she's eating something. People are surprised when I let her eat birthday cake, but never question my decision or knowledge.

Even so, it's nice when someone goes out of their way to help me out in the food department. Like yesterday. We were at the pool (are you sensing a theme - all my stories seem to start, "we were at the pool..." It's been a GREAT summer!). One of my friends had brought a box of Chip-wiches for her kids, and she had 3 left over. You know what I'm talking about - 2 chocolate chip cookies sandwiching vanilla ice cream, then rolled in chocolate chips. Some women, out their natural generosity, would've come right over and said, "Would you kids like an ice cream sandwich? We have enough for everyone!"

To non-D families there'd be no problem. To me this brings a world of crap. In most instances I would say no thank you, because it just introduces an unknown factor into Grace's blood glucose that, frankly, unless I'm planning, I'm not interested in. Herein starts the crap. First, Grace would give me the sad face, immediately followed by the more fierce MAD face. Tears? Maybe. Tantrum? Not likely, but boy would she be pissed.

Then my other 2 would join in. "Why can't WE have it? Just 'cause Grace can't doesn't mean WE can't." Tears? Yep. Crap. Crap. Crap.

This, ladies and gentlemen, is what's known as a no-win situation.

Which is why I totally appreciated my friend's tactic. She hid the box from my kids as she walk directly over to ME. Not my kids... ME. She leaned over and whispered her offer, following it with a tentative, "I'm not sure if this would be okay."

WOW! How great was that! I was able to politely decline, she took the box away, and none of my kids were any the wiser. It was great! No tears, no attitude, no crap!

It's so great when friends make even the smallest effort to understand. It may not happen all the time, but when it does I savor every moment.

Any Food Police stories out there?

Walk Kick-Off

2010-08-09T16:10:00.007-04:00

Yesterday we attended a kick-off event for our 2010 JDRF Walk For a Cure. It was held at the Franklin Park Zoo, and a yummy lunch was provided by Panera - both local sponsors of the walk. Other than it being wiltingly hot, we all had a great time.

Grace and a friend watching the hot, tired, lazy lion.

We caught her heading down in time for a snack.

Insulin pump, Walk t-shirt, and a big 'ol cake batter ice cream cone! What's wrong with this picture? (bolused correctly, BTW!)

As fate would have it, we bumped into the family that gave us our Bag of Hope. They live about 30 minutes from us, but other than the one meeting we've never seen each other. But there they were, hanging out at the petting area. It's funny how you can talk forever to virtual strangers once the D connection is made! It feels like instant family.

A big THANKS to the zoo and Panera! We had a great day, and it's time to get ready to walk!

One Flaw In Women

2010-08-07T23:52:00.002-04:00

Women have strengths that amaze men......

They bear hardships and they carry burdens,
but they hold happiness, love and joy.

They smile when they want to scream.

They sing when they want to cry.

They cry when they are happy
and laugh when they are nervous.

They fight for what they believe in.

They stand up to injustice.

They don't take "no" for an answer
when they believe there is a better solution.

They go without so their family can have.

They go to the doctor with a frightened friend.

They love unconditionally.

They cry when their children excel
and cheer when their friends get awards.

They are happy when they hear about
a birth or a wedding.

Their hearts break when a friend dies.

They grieve at the loss of a family member,
yet they are strong when they
think there is no strength left.

They know that a hug and a kiss
can heal a broken heart.

Women come in all shapes, sizes and colors.

They'll drive, fly, walk, run or e-mail you
to show how much they care about you.

The heart of a woman is what
makes the world keep turning.

They bring joy, hope and love.

They have compassion and ideas.

They give moral support to their
family and friends.

Women have vital things to say
and everything to give.

HOWEVER, IF THERE IS ONE FLAW IN WOMEN,

IT IS THAT THEY FORGET THEIR WORTH.

-Anonymous

Happy Friday!

2010-08-06T19:48:00.003-04:00

I hope everyone has a great weekend, filled with lots of splashing, jumping, dancing, and laughing so hard your drink comes out your nose!

Pump Site Gremlins

2010-08-04T16:59:00.006-04:00

Thus continues my week of crazy things happening to Grace's infusion site.

If you remember, yesterday her tubing mysteriously disconnected from her site. Gremlins? Possibly.

Today, she comes out of the bathroom at the pool holding her pump in one hand, and her tubing CONNECTED to her infusion site in the other hand.

"It just came out, Mama. It didn't even hurt. All of a sudden I just noticed it dangling."

I know some kids have trouble with sites not sticking in the pool. But so far we've never had an issue. She spends entire days swimming and those sites stick to her like crazy glue. We need Uni-solve to remove them.

Not today. It just slid right off.

Thankfully she was 103 at the time. I figured with all the exercise from the day, we had time to make it home before I needed to put in a new site. Got home, showered, put in new site, checked blood sugar - 107!

As Meri would say...

BOOYAH!

WTF?

2010-08-03T22:24:00.006-04:00

Sorry. I don't mean to offend those with sensitive ears (eyes? since you're reading?).

But SERIOUSLY...

Yesterday, Grace's numbers were STELLAR! We rocked it! Caught when she was heading down in time for a quick snack. Saw when she was trending up in time for a bolus to take effect.

KNOCKED IT OUT OF THE PARK!

Till after dinner.

I'll back up... Before dinner she was 145. AWESOME!

Bolused for 75 carbs. Large amount due to some delish looking corn on the cob. Fine, no prob. Even gave her a small extra bolus because she really, really, really wanted a banana after dinner. Good. Got it covered.

Then the sh@! hit the fan.

She goes to get in the shower and screams for me to come into the bathroom.

"What, my Little Angel, could possibly be the problem?" says a mom about to be blindsided.

"This." she says, and proceeds to show me that her tubing had somehow DISCONNECTED from her infusion site.

WTF!

Apparently, at some point before she was bolused for her WHOPPINGLY LARGE dinner, she'd disconnected. She has no idea how it happened.

?????

Post dinner number - 314.

One correction bolus and two hours later - 384.

Correction by injection and 1 1/2 hours later - 124.

SERIOUSLY?!?!

I'm having enough trouble keeping up this summer. I don't need curve balls thrown at me like this.

COCKTAILS, ANYONE?

Lunch

2010-08-03T17:31:00.004-04:00

This is how I pack lunch for the kids at the pool:

Each has their own container, and it makes it easier to pre-pack and count Grace's carbs. I'm buying stock in blue painter's tape - it works wonders when I need to label something, then peels off in a snap!

So what, you ask, does a 62 carb lunch look like? It looks like this:

sunflower seed butter and reduced sugar jelly on whole wheat = 30 carbs(there's actually a whole sandwich there, not just half)

grapes = 19 carbs

baked Cheetos = 13 carbs

I know it seems like a lot, but Grace will eat every single bite of her lunch. Then come back in an hour looking for a snack. My girl's a good eater, for sure!

Our Lantus Adventure

2010-08-02T21:51:00.012-04:00

Whew! Now that vacation's over I need a vacation! We all had such a great time beaching and boating and playing with cousins (and playing and playing and playing... I barely saw my kids - am I aloud to say that I loved that part?)

The only thing wrong with this picture is that 3 of my nieces aren't in it. WE MISSED YOU C AND G!!! Sorry you had to work, S.

Highlights included the trampoline time, our intra-family swim race (won by Uncle M), fishing on Uncle D's boat, rides on the boardwalk, a visit by Donna E. (my childhood babysitter who we only see on special occasions anymore), and lots and lots of extended family time.

Grace, after she caught probably the smallest stripped bass in the bay!

As I mentioned before, our diabetes action plan worked pretty well. Going on Lantus shots for the week made it much easier on the beach, not having to worry about sand getting in the pump. It was a bit cumbersome when we had to bolus her - we had to remove the film we put over the site for protections, bolus, then immediately reapply a new film, all while keeping sand off the site and anything sticky in the area. But, overall it worked well.

Her numbers, you ask? MUCH better than before. However, we did find ourselves fighting several lows, which have been pretty much non-existent in our house all summer.

Which brings me back to Lantus.

It worked well for what we needed - an option to help with our "what do we do with the pump at the beach" question. One shot of Lantus at bedtime provided 24 hours of basal insulin. But what we couldn't do was adjust her basal rate based on her needs or activities.

Usually, if Grace has had a particularly active day and seems to be running on the low side, I can lower her basal rate (the amount of insulin constantly dripping from her pump into her body to cover her steady need). More activity = less insulin needed. Her insulin pump allows for constant tweaking like this. A shot of Lantus = constant basal - no tweaking.

We arrived at her Lantus dosage based on recent basal adjustments we'd made. She'd been running high for weeks, which led to upping her basal rate on her pump. So 5 units of Lantus once a day was the dose. She did fine with this most of the days, but seemed to run low every night.

You know somethings wrong when we can't get her above 50 all night after pizza and ice cream!

Sleep was a rarity - blood sugar checks every two hours (sometimes more) pretty much every night. YUCK! I've never had to push the middle of the night juice like I did last week. But since I couldn't lower her basal rate to help offset the low, I had no choice but to "juice it." (Well, at least we WERE at the Jersey Shore! Get it? Steroids..."Juice"...please don't tell me you have to be from Jersey to get the joke!) We got to the point of feeding her Fig Newtons or yogurts at 2am to help raise and maintain her numbers. Didn't work.

So now we're back on the pump. Yesterday she was low all day. Why? Who knows. ABSOLUTELY. NO. ACTIVITY. Rest and relax day. Movies and indoor play. Low, low, low.

Today she's had a good day. Caught her once at 70, in time for a bolus-free snack. We'll see how tonight goes.

I'm tired. I need a D-cation.

A Letter to My Daughter

2010-07-29T22:43:00.002-04:00

Dear Grace,

You amaze me. Every single day you do something that leaves me speechless. Most recently it's been watching you emerge from your protective, quiet shell, into an outgoing risk-taker.

You are an observer. You watch, learn and take things in. You've never been the kind of person who needs to be the center of attention. That, in fact, makes you uncomfortable. You prefer the peripheral. From the side you have a better view of the entire picture. That's how you participate... from the sidelines. It's always been your way, and I've always loved and accepted you for who you are.

But you are changing, my love. You are becoming a person who jumps right in with both feet.

I first noticed it on our girls trip a few weeks ago. We were at a conference for young people. The last session had the young people seated in the middle of the room, and the parents and family members on the sides. Any child who wanted to was given the chance to go up to the mic and say a few words about what he or she would be taking away from the weekend. I watched you in your seat, confident that you wouldn't choose to talk. The girl I knew wouldn't even have considered it. It's fine for others, just not your style. You squirmed, you wiggled, you screwed up your confidence, and MY LITTLE GIRL marched right up and spoke in front of 250 strangers! My pride came pouring out as tears as I watched you put your nervousness aside and take a risk. You did it!

Another example is when you went off to camp this summer. Yes, you were more familiar since you went there last year, but this year seemed different. You seemed to embrace having more fun. Last year you received the Silent But Deadly "award" referring to your quietness. This year you got the Jumping Bean "award" for constantly swimming out to the floating dock, climbing on, and jumping of in all manner of shapes and forms. How great is that!

That brings me to tonight. We went to the boardwalk to ride the rides. In the past, my sweetness, you've been timid about riding the "scary" rides. Anything you weren't familiar with you'd never want to try. A little out of fear, a little out of intimidation, but certain rides just weren't for you. But not tonight! It turns out that my little girl, who got carsick TWICE on the way to camp this year, LOVES the spiny rides! And the fast ones, and the scary ones, too! You couldn't get enough! Tilt-a-Whirl, Bumper Cars (which you've never driven before, and take it from me, there's a learning curve to figuring out how to get out of a corner!), Roller Coaster, Scrambler, the lay-on-your-belly-and-fly-around-in-a-circle ride, THE LOG FLOOM! You loved every minute, and embraced the fun of it all. You seem to have realized that part of the fun is in the not knowing. And that, my girl, is a huge life lesson.

So it came as no surprise to me that you wanted to give yourself your Lantus shot at bedtime. You've been off shots for almost a year, and here you are, confident enough to give yourself your one shot a day. My heart overflows.

I don't know what has brought about this transformation. Is part of it being a child with diabetes? Every day you face challenges I will never know - I can only watch from the sidelines. Is living with a chronic condition, and meeting it head on day after day after day making you into a warrior princess? I don't know. I'd like to think that's one silver lining.

Whatever the cause or the outcome, I love watching you become the person you are. You are my joy.

Love,
Mama

What I Can't Say

2010-07-28T16:18:00.003-04:00

I'm not going to say it.

I won't let my husband say it.

Because if I were to say it I would be jinxed.

And Grace's numbers would be jinxed.

And I don't want that guilt.

Suffice it to say, I'm happy with our treatment plan for our trip.

That's it.

There's nothing more I can say.

But I know all my D-mamas out there know what I'm talkin' about.

If you don't get my vibe, I'll explain it next week.

Cause I can't talk about it now.

Bye.

My Sandy Dilema...The Solution

2010-07-27T08:16:00.002-04:00

I'm on vaca now, and I don't know how to download pictures onto my sister's computer. If I did I would show you a picture of Grace's butt. Well, not her butt, but the solution we came up with to cover her site while wallowing in the sand and surf.

The solution turned out to be a combo of things. First, on the advice of our CDE we decided to semi go off the pump for the week. Grace is back on Lantus - a long acting insulin that will cover her basal needs for 24 hours at a time. This allows us to take her off the pump for the day, but her basal needs are covered. Then we hook her back up to the pump whenever we need to bolus for food or to correct a high. Each night around 8:30 she gets 5 units of Lantus. I was nervous, thinking we were just kind of getting her back to somewhat normal numbers and didn't want to mess with that. But it's proven to work really well! We spent the entire day at the beach yesterday (I'm talking noon to 8pm) and she was constantly either in the ocean, in the pool, or playing in the sand. It was great not having to worry about the pump, because it was tucked away safely in the cooler.

The second part of the solution is called IV3000 Frame Delivery. It's a thin, transparent, waterproof film we put over Grace's infusion site which keeps salt water and sand off her site. When we need to bolus her we simply remove the film, bolus, and put a new one on. The film is sticky enough that we haven't had any problems with it peeling off on it's own, but it's actually pretty easy to remove when we need to.

Grace's numbers have... wait for it... been pretty... dare I say it... GOOD! Not spectacular - she's been crashing pretty bad mid mornings but that may be due to early early morning sessions on the trampoline. She falls about 75 points in one hour, but the time it happens each day is a mystery. Yesterday she was 120 at 11am, then 49 at noon. It happened the day before, too, but later in the day. Then the low is usually followed by a rebound high in the 200s. (I'm starting to crave a CGM) But other than that she's managing pretty well.

All in all, the first leg of our trip has been a spectacular success. I love seeing my sister and her family, and my kids actually love it more than me (if that's possible). Grace's numbers, if not behaving, are at least not killing me. Cross your fingers that this continues.

My Sandy Dilema

2010-07-23T07:32:00.004-04:00

(Acknowledgement: I'm not posting a recipe for D-Feast Friday, but I'll definitely be trying some of the delish sounding ones. I love to cook, but Grace's numbers are very finicky - very sensitive to fatty foods (I'm talking to you, Cheeseburger!). Most of my recipes I have NO IDEA what the carb count is, but through trial and error I can bolus her correctly. So I look forward learning lots of new recipes, but for now I have bigger fish to fry... pun intended!)

It's vacation time! Woohoo!

We're going to the beach for a glorious week of sun, surf, sand, and hopefully I can finally make some headway in my book.

But I have a question for all you D-mamas out there. And I'm only looking for D-mamas of tubed pumpers (sorry, no Omnipoders or shot givers... much love, but this is one specific thing you guys are fortunate enough to not have to deal with. ).

What do I do with Grace's pump at the beach?

When we're at the pool she either wears her pump if she's out of the water, or I put it in my cooler while she's swimming.

But at the beach I envision rolling around in the sand, digging holes, making sand castles, running to and from the water, sometimes going in, sometimes not.

I've heard that using the little clip to close off the site when the pump is removed is good for keeping sand and grit out. But I'm kind of nervous about getting sand in the pump itself.

Would you suggest just keeping the pump in the cooler and checking her number and bolusing accordingly, say, once an hour?

Should I somehow wrap it in a zip-lock bag or plastic wrap, with the tubing sticking out for when she's wearing it?

I know you all are a bunch of smart cookies! Any insight would be appreciated.

Mommy Day

2010-07-22T19:46:00.003-04:00

Today was Mommy Day.

Grace is at camp, and my other two were carted off to Grandma's house for the entire day - they left before breakfast and won't be home till after dinner. They'll already be showered and in their pjs and hopefully fast asleep from the car ride home.

And what did I do with my day?

NOTHING!

I barely got out of bed. Watched a lot of TV (there's really nothing good on TV anymore). Took a nap.

See, I've been so exhausted lately. The wimpy reason is because I've been spending so much time at the pool, and it's been so hot that we're all drained at the end of the day. But the hidden reason is that I've been getting up two to three times every night to check Grace's blood sugar. I've talked about how bad her numbers have been this summer, and that leads to lots and lots of BG checks. And this week I've been up at 6:30 every morning to help get Grace off to camp.

So I took one day, and reveled in not having to make breakfast, lunch or dinner, no dishes, no laundry, no cleaning (well, a little, but not much), no paying bills, no grocery shopping, no playing referee or nursemaid or decision maker for my kids, no carb counting, bolusing or site changing, no worrying about numbers, numbers, numbers. I didn't make a single phone call. I took one day off from being a mother, wife, daughter, friend.

I didn't want or need to be pampered or taken care of. I just wanted to BE.

And it's been glorious!

Thank you to the best husband in the world for giving me this day. I love you!

Shot May Reverse Type 1 Diabetes

2010-07-20T22:25:00.005-04:00

This was sent to me by a fellow D-mom:

Shot May Reverse Type 1 Diabetes - Health News Story - WCVB Boston

What do you think?

Hands

2010-07-20T21:46:00.003-04:00

It's said you can tell a lot by a person's hands. An older person shows their experience and life lessons. A young one shows her frailty and inexperience.

Grace's hands show her life.

She bites her fingernails when she's nervous.

She likes blue nail polish.

These hands love to write and receive letters from her pen pal "G8."

They smell of chlorine from all the time she spends in the pool.

On her wrist is her constant - her green medical ID bracelet adorned with soccer balls. It's frayed and stretched out, screaming to be replaced. She's my active girl.

This week sports a new decoration - a blue wrist band denoting her proficiency in the water. With this she's allowed all access to the camp pool. No restrictions. Great swimmer.

The "1.7" is how many units of insulin she received for lunch at camp today. That's how the counselors keep track.

If you look closely you can see the callouses on each and every one of her finger tips. A badge she bears attesting to all the finger pokes to check her blood sugar.

These are the hands of a diabetic.

These are the hands of my daughter.

Why I Love Camp

2010-07-19T21:32:00.003-04:00

Today was Grace's first day at camp. She goes to the Clara Barton Camp. This is her second year attending one-week day camp. She's on the timid side, so she's definitely not one of those kids jumping for joy and squealing wanting to introduce me to all her new BFFs she met today. She's my observer. She takes it all in, and quietly loves everything camp has to offer.

And I love camp, too. I know several of you D-moms out there have blogged about your concerns sending your little ones off to camp. Not me. I actually quite enjoy the short break camp offers me from obsessing over Grace's numbers. When one of my other kids wants a snack or a drink they can just have it. No weighing, measuring, checking or bolusing. I know that Grace's well cared for by qualified counselors and nurses, most of whom are diabetics themselves. She crafts, swims (yep, swimmer's ear is all cleared up!), plays Doctor Dodgeball (the best I can gather is this is some sort of game where the goal is to pummel the "doctor" with the ball - how perfect!).

When Grace is away I get to spend quality time with my other two children. I so often feel they're the forgotten one's in our diabetic home. So it's nice to have a week to splurge with them in the food department - slushies, ice cream in the middle of the day, orange juice for breakfast (I know, crazy).

Maybe if it was sleep-away camp I'd be more concerned. Her numbers are never stellar when she's there (for example, today she was 78, 59 and 196) but these numbers are actually pretty good compared to where she's been recently. And I feel the enjoyment she gets far outweighs the shaky numbers.

So I love camp. And Grace loves camp. And I have a sneaky suspicion that her siblings love camp, too!

Where do you weigh in on camp?

Truth and Consequences

2010-07-16T22:01:00.003-04:00

I try to teach my kids to eat healthy. Always have - even before D. When Grace was diagnosed, and we were in the hospital with the nutritionist she smiled when I gave her an example of a typical day of food:

Breakfast - low sugar cereal, milk, fruit, maybe eggs and toast, occasionally pancakes
Lunch - lunch meat sandwich on wheat with mustard, some sort of chips on the side, fruit, milk
Snack - granola bars, yogurt, pretzels, fruit, cheese and crackers, etc.
Dinner - protein, carb, veggie, milk, fruit

I asked what she was smiling at and she told me we weren't going to have to change our foods at all, just maybe some tweaks to adjust to the shots schedule.

Don't get me wrong - I'm not overboard crazy with health foods (not that that's a bad thing... it's actually quite admirable, it's just not me.) I simply never saw the need for cookies for a 10am snack at school. I don't give an all access pass to the snack cabinet. And we do have desserts, just not very often. I always noticed how the extra sugar after dinner made my kids go berserk right at bedtime. And berserk kids make for a berserk mommy. Not pretty. For anyone.

My philosophy was, and is, pretty much everything in moderation. If you're hungry, eat. Just make smart choices that will fill your tummy and give you energy. Now I find my kids actually prefer fruit as a snack. They love yogurt, cheese, and (my favorite) sunflower seed butter on wheat bread with banana on top - yum!

But it's hard. It's hard because they love the junk, too. It's hard for a 5, 7, and 9 year old to believe me when I tell them that potato chips, although extremely yummy and satisfying, aren't, in fact, healthy.

Now I have proof. Visual aids, in fact.

That proof comes in the form of Grace's blood sugar. Her little One Touch meter is our family's reminder of the quality of our food. When we eat well, she's usually in range. No problem. Then there are days when we go to a picnic (today) where she eats a cheeseburger (her nemesis), a small amount of potato chips (yikes), mac-n-cheese (oh boy), then later a chocolate chip cookie (this is not going to be pretty) and tops it all off with an ice cream sandwich (Good God!). Keep in mind that all these items were counted and bolused for. I even extended 30% of the cheeseburger bolus for 2 hours to account for all the fat.

What does she win? A big, fat, ugly 440!

My reaction? Well, duh! Of course she would go sky high. Look at the sh@# she ate!

I corrected her and she was down to 220 within an hour. I'll check her again soon and expect she'll be even better. Or maybe not. Who knows tonight.

But this is the balance I walk between letting her be a kid first and a diabetic second. We don't eat like this often. And as much as it makes my stomach turn into knots when I see that kind of number, I opted to use it as a teaching tool for all my children on the car ride home. "See," I said. "This is the proof that what we chose to eat today wasn't healthy."

I will try to learn how to better manage days like today. And hopefully Grace, and my other two, will learn that there's consequences to the food choices they make.

I just wish I didn't love cheeseburgers so much!

Summer Fun

2010-07-15T21:38:00.004-04:00

Nothing says summer like a blue tiki umbrella in your hair at the splash park.

Pool Party

2010-07-13T23:21:00.004-04:00

What do you do when your daughter has been waiting for a month for her party, that she's planned to have at the pool for six months, but she has swimmer's ear and isn't supposed to go under water? You do this...

Then you put a swim cap on top, as an extra layer of protection, add in some Motrin, and you get this...

One happy 9 year old girl who finally gets to celebrate her birthday! "I think this was my best party ever, Mommy!" What more could I ask for? (Ok, I know, I could ask for a reprieve from her yucktastic numbers. But this was enough for today.)

Birthday Ear

2010-07-12T16:08:00.004-04:00

Apparently, there's a "celebrate your birthday with Swimmer's Ear" epidemic going around! Grace will be copying Addy by having her 9th birthday party at the pool one day after being diagnosed with swimmer's ear. It's the gift that keeps on giving!

The poor girl is in so much pain, but thankfully Tylenol is working well and not spiking her blood sugar.

She is running a tad high today, but diabetes being diabetes, I don't know if that's due to her usual (of late) erratic numbers, or the infection. Which is actually more of an irritation not an infection since she's not being treated with antibiotics. I do know that her numbers have been crazy long enough that it's not all the fault of her ear.

But it's making it harder to zero in on what her pump settings should be. I'm hesitant to make too many more changes until this clears up. I guess I'll wait another day or two before deciding if more changes are needed.

HUGS

2010-07-09T10:39:00.002-04:00

Here's some Friday feel-good hugs I'm sending out to all my friends. Have a great weekend!

The "Looks"

2010-07-07T22:09:00.004-04:00

Grace had her well-visit this afternoon with her primary care pediatrician. It seems like every time I go there lately all I think about is when my kids were babies. Today I showed them all the scale they were weighed on as infants. I just can't seem to believe that my oldest is now 9. NINE! My God... that must make me... oh never mind... age is just a number, right?

Grace always brings up the day she was diagnosed in that office. Since we were alone, no other kids in tow, she always looks at me and points to the chair we were sitting in together in the waiting room, right before heading back to hear of our new reality. It's our own private knowing of a time only the two of us share.

Our joke is that even though Grace hasn't been due for any shots at her last several well-visits, the doctor always seems to want to poke her for something. Flu shots, H1N1 shots, pneumonia shots, blood draws, you name it, he wants to give it to her. Sometimes we politely decline, but usually if the CDC, AAP, and ADA recommend it we go for it.

Today it was the Hepatitis A shot. After asking some questions I decided to have her get the shot. Now, I don't know about your kids, but my diabetic child, who endures 10 finger sticks every day, infusion site changes every 2 days, and dealt with 3 insulin shots every day for 9 months, she HATES SHOTS! She barely flinches when it comes to her diabetes maintenance, but try to give her a vaccine and you'd think the doctor was coming at her with a machete. One time she wedged herself under the exam table and it took all my strength to get her out. She starts to shake, her doe eyes fill with tears, and she looks at me like I'm about to feed her to the lions.

But not today. Nope! My girl started to get upset so I gave her a good old-fashioned pep talk. It wasn't the rainbows and blue sky talk. It was the get down to business talk. I reminded her that she was brave and strong, and that she was more powerful than any shot. Stop being upset and deal with it. And she did.

As we were leaving the office she gave me the look I love to see. I got the proud look.

What Diabetes (and our CDE) Taught Me Today

2010-07-06T17:39:00.003-04:00

I'm a pretty smart person. I went to college. I read a lot. I like to learn new things and apply my knowledge.

So when something goes wrong, I'm the kind of person who blames myself. I feel like I should have foreseen the problem and fixed it beforehand. Or I get mad at myself for not fixing it sooner.

Take, for example, Grace's AWFUL numbers for the past 2 weeks. I blamed myself. I must have miscalculated her carbs at breakfast, which lead to the 328 an hour and a half later. I probably shouldn't let her be disconnected from the pump for so long during swimming, and that's why she's been so high during the day. I should've seen that she would crash down to 45 after a day of swimming, even though she spent most of the day in the 200s.

And then it hit me... email the craptastic logs to Grace's CDE and see what she thinks. I love our CDE - she's young, smart, funny, and a T1D since the age of 10. Maybe she could enlighten me as to how to get a handle on these summer numbers, and teach me how to keep them from pinging from high to low and back again.

And you know what she told me? "Let's change 2 of her basal rates, and lower her breakfast insulin:carb ratio."

I was so busy blaming myself for the bad numbers, I missed the simple fact that they could be addressed by adjusting some pump calculations. See, Grace is still honeymooning 17 months after diagnosis. And it seems like during every major "episode" she takes another step off the honeymoon. By "episode" I mean big changes to her schedule. It happened over Christmas vaca this year, and after our Florida trip, too. During both those times, schedule changes, food changes, travel, etc. all converged to produce horrific numbers for a week or two. And it's happening now. Ever since school got out (2 weeks ago today) her numbers have taken a swan dive off the diving board and into the deep end.

And I failed to notice the pattern.

But the good thing now is, I see it! I've learned something today. I've learned to spot the triggers to another big shift in her numbers. And I hope I've learned to stop expecting that I alone can force Grace's numbers into submission. That maybe it's easier to address the problem (change the pump calcs) instead of worrying about the symptoms (why is she so high during swimming? shouldn't she be on the lower end?)

So we changed the pump today. I'll send the numbers in on Thurs and see if there's more we need to do to stabilize her. Hopefully this is the beginning of the end of our latest bout with yuck numbers.

What has diabetes taught you today?

CGM

2010-07-05T20:31:00.002-04:00

I've started thinking about getting a CGMS for Grace. Probably because a graph of her numbers looks more like the Swiss Alps lately than the flat pancake we strive for. So I've started a pros and cons list:

Pro:
* The most obvious - we'd be able to see a more complete picture of her blood sugar numbers
* We could get a more accurate picture of how Humalog works in her body - how soon it starts to work and when it peaks
* Catch and treat highs and lows before they get out of control
* Identify how to better bolus for problem foods (yes you, cheeseburger!)

Con:
* I don't know if insurance would cover it
* Grace is so tiny, and doesn't have much real estate for another implanted medical device
* Still would require finger sticks. When Grace thought a CGM would fully replace sticks she was all for it. After I told her we'd still check her blood from her fingers just as often, she quickly changed her mind.
* Accuracy, or lack thereof. I've heard it's questionable and I'm leery of subjecting Grace to the burden of wearing a CGM if it's not going to give me numbers I can count on.

I guess I feel like, for now, wearing the pump is enough to ask. She loves the pump and wouldn't go back to shots for anything. But if I ask her to also wear a CGM, is she going to start to feel over-burdened? I don't want her to think about her diabetes all the time.

On the other hand, her numbers have been so erratic lately that maybe a CGM could help me figure out what's going on.

How did you decided to CGM or not?

A Bad Case of the Nerves

2010-07-01T16:32:00.003-04:00

Okay - I'm in a quandry. Today was Grace's first swim meet. And just like last year, her nervousness makes her blood sugar spike. Like, ALL MORNING!

She woke fine, at 113, but went up from there: 200, 283, 28o, 290. I'm correcting, but it seems like all the extra adrenaline from the morning prevents the insulin from working. Then, predictably, she crashed at 65 this afternoon.

I'm not sure what to do. Do I bolus aggressively for breakfast assuming the high will come? But what if it doesn't, and I'm left force-feeding her on race day? Should I raise her basal rate when I see her numbers trending up? All you experienced D-moms out there... I need your help! How do I combat the nervous spike?

How Far I've Come

2010-06-30T17:23:00.003-04:00

Grace's 9th birthday was at the beginning of June. I mentioned in a previous post how differently I felt this year versus last year. As it turns out, my husband found an old e-mail I'd sent out on her birthday last year, describing to friends and family how I felt. As I re-read it, I can't believe how sad I felt. Thanks to the wonderful support of friends and family, and most importantly my new DOC friends, I've come a long way. What a difference a year makes. Here's the e-mail:

Today is Grace's birthday, and I'm sad. I'm sad for the loss of the "healthy" Grace. I feel like we've said good bye to the last year that she didn't have diabetes. Planning this year's party is completely different than last year's. Now, we're skipping the pizza and ice cream and have to plan her cake around snack time and extra insulin. People have offered to bring desserts, and I have to say no.

I'm sad because we're now in the season of picnics, and bar b ques, and ice cream, and lack of schedules, and none of that works for us anymore. Grace cries at halftime of every soccer game, when the oranges slices come out and she can't have them.

I'm sad because Grace has taken this on so well. She went to a birthday party last weekend, and all she snacked on was carrots. She said no to the fruit and chips. All on her own. I had to come back to the party in the middle to check her blood sugar and give her insulin so she could have cake. It's a huge burden that she bears, for the most part, on her own. For as much as I can try to guide her through this, it is her disease. She's such a trooper that it breaks my heart.

I'm sad for myself, because I feel like I never had a chance to digest all that's happened, because life goes on, and I have two other children who need me too. And I feel selfish for even feeling this way.

I won't tell Grace any of this. This is a day to celebrate her youth and her health and her resilience, which deserves celebration. This is a day to remember that things could be much, much worse. This is a day to hope that there will be a cure for diabetes in her lifetime. But in a small part of my heart, I am sad."
June 4, 2009

Taking the Plunge

2010-06-28T21:38:00.004-04:00

Grace uses the Animas Ping pump. We chose it for several reasons:

1. It's capable of giving the lowest incremental amounts of insulin, and with Grace's honeymoon still going strong that worked for us.
2. It's parent company is J&J, so they're working on partnering with DexCom CGMS.
3. Grace is small for her age and lean. Something about the OmniPod looked so big on her teeny body.
4. Remote meter capability, so I can bolus from the pump or the meter.
5. I was concerned about damage or loss to the OmniPod handheld thingy (not sure what it's called, but the meter, boluser thingy... you know what I mean).
6. It's waterproof.

So far, so good with all the above reasons. Including, and apparently not to be forgotten, the waterproof part.

Yesterday we were running late for swim team practice, so I pulled up at the front entrance and had Grace hop out and run in. I told her to just leave her stuff in a pile and I'd find it and bring it to our seats.

I proceed with said plan, park, unload two other children and head in to the pool area. I find Grace's things, grab them and find a cabana for some shade. Confirm she's in the pool, and start sun lotioning.

All of a sudden, Grace comes up to me in tears with her pump in her hand. She had been wearing a lycra waist band with the pump tucked inside over her bathing suit. When she ran inside and undressed in a hurry, she totally forgot all about the pump, left it on, and jumped in the pool. (A small disclaimer - I forgot about the pump, too! I didn't remind her to take it off, and never even looked for it in her bag! Bad D-mommy moment!) After 4 laps she remembered and that's when she came to me, petrified she'd ruined it. I took it off her, wrung out the waist band and did a quick inspection. Know what I found? Absolutely no problems! Yippee! Alls well with the waterproof pump!

I've heard the stories of how it's not as waterproof as you might think, so we usually don't test it. Her blood sugar always drops while swimming anyway, so it just works best to take it off while in the pool. But I tell ya - it's sure nice to not have a water-logged broken pump right now. What a relief!

Roadkill

2010-06-28T13:15:00.003-04:00

Went away for the weekend with Grace. Her numbers were pretty unstable, meaning that she was high every night, through most of the night (restaurants are tough - I never seem to be able to extend the bolus long enough). Spent a lot of time in the car. This is the refuse in my center console.

Too tired to post more now. Will catch up tomorrow!

How Low Can You Go?

2010-06-23T21:13:00.004-04:00

Had a scare last night. I went in to check Grace at 10pm, and was smacked in the face with a:

LOW

(blood glucose below 20)

Hello? What? Never saw that before! Of course, that was the last test strip in the vial. So as I was running (actually sprinting) downstairs to grab a juice and the glucagon, I also grabbed a new bottle of strips. In the 8 seconds it took to do this, I ran a mental checklist of her appearance. She was breathing slow and deep, as if in a deep sleep. She wasn't sweaty or agitated, and didn't appear unconscious - just, you know, asleep.

So instead of immediately jabbing my daughter, who may be unconcsious or may just be sound asleep, with that ENORMOUS glucagon needle, I thought maybe I should double check. I know I've been having some trouble adjusting to our new pool activities, but this seemed a little extreme.

Recheck - 93.

I need a vacation from summer vacation.

Pumpin at the Pool

2010-06-23T08:25:00.006-04:00

This is our first summer with Grace on the pump. I kind of thought it was going to be pretty easy to regulate her blood sugar - simply lower her basal rate and we're good to go.

I'm finding it much harder than anticipated. She uses the Animas Ping which is supposed to be waterproof, but from a couple accounts I hear that's not always the case. Plus, swimming always plummets her numbers, so disconnect while swimming is the rule.

But even disconnected, I have trouble keeping her over 70. Today I was literally chasing her around the pool with Gatorade during swim team practice! Yesterday every snack she ate during the day I didn't need bolus. What happens is she comes out of the water wanting a snack. I check her number and she's, say, 100. 15-20 carb snack with no bolus, don't even bother reconnecting, and she's back in the water pretty soon.

However, late yesterday she came out of the water, I didn't check her blood sugar, she stayed out for a while, I forgot to reconnect her, and she ended up at 318! I felt so rotten, because I could've prevented it if I'd remembered.

Do any of you have a good pool-day routine that I can follow? It seems I can't keep Grace from pinging from low to high to low again. I know much of the answer lies in testing more frequently, but I'm already testing 10 times a day! Any pumping and swimming advice?

An Old Friend

2010-06-21T16:08:00.003-04:00

Yesterday I guest posted on Kelly's blog, Diabetesaliciousness.

Kelly and I actually went to high school together. I don't remember her having diabetes, but I do remember her undying love for John Taylor from Duran Duran (who could blame her?).

That's what's so great about the DOC. Kerri mentioned Kelly in a post a while back, I followed it, and was looking at a school mate-turned-diabetes-activist on my computer screen. How great is that? Talk about not feeling so alone!

So hop on over to Kelly's blog to check out my post (yesterdays). It's about, of all things, friends.

PS - Kelly's so lucky I don't have a scanner ... I have my yearbook and I'm not afraid to use it!

Dear Dad,

2010-06-21T07:59:00.005-04:00

Yesterday was Father's Day. I called in the morning to tell you that I love you, I'm thinking of you, and to hope you have a great day. But that one phone call couldn't possibly convey how much you mean to me.

You have made me the person that I am today - an intelligent, confident, competent mom fully capable of taking care of a child with a chronic illness.

From you I learned strength. I grew up confident in the knowledge that you could carry the world on your shoulders. When things would crumble around you, you would be the one to pick them up. I'm now that person in my family, facing diabetes head on and leading the charge to keep my daughter healthy.

From you I learned courage. I would often wake in the middle of the night with horrible nightmares and you would talk to me about them, asking me to describe in detail the monster that was chasing me. You showed me that if I face my fears I would realize they're not as scary as I once thought.

From you I learned wisdom. You're the smartest person I know, and you taught me to value education. "Knowledge is power," you'd say and I cling to that. Sometimes it's a challenge, and I know I'll never learn all there is to know about diabetes. But I learn from my mistakes and am able to move forward, armed with new information and new insight.

From you I learned confidence. You always told me I could do anything I wanted in this life. "If you want to be a ditch digger, be a ditch digger. Just be the best ditch digger you can be." My role now is the mother of a diabetic, and I know no one can take better care of her than me.

From you I learned love. I never questioned your love and devotion to your family, and to me your youngest child. You were a loving example of what a husband's role is, and because of you I picked a great one. "Take care of your family," you tell me. You did. I do.

I learned from Mom compassion, empathy, forgiveness and caring, and how to nurture hearth and home. But you showed me it's okay to be a strong, take-charge person.

I love you more than words can say. I hope as you get older, you see the legacy you're leaving behind. You need only to see how well Grace is thriving to know you did a great job raising your family.

You're the best Dad I could've ever had.

I'm Low

2010-06-18T10:02:00.003-04:00

...as in I'M low. Grace's supplies are low, not her number.

My cupboards are sparse. This is my kitchen cabinet where I keep all her stuff.

Top shelf: candy, glucagon (freshly replaced and no longer expired), spare meters, 4 boxes (4 BOXES!) of syringes from our MDI days, pump manuals

Middle shelf: ginormous binder holding all Grace's medical paperwork, insurance crap, prescriptions, flex spending, blah, blah, blah; insulin bottle travel cases, ketosticks (which we never use - I think they're from her diagnosis), glucose tabs

Bottom shelf: blood ketone strips (right now the only thing I'm flush with), test strips, alcohol swabs, pump cartridges, infusion sets, uni-solve

I haven't reordered yet - I'll probably wait till I have one box of cartridges and sets left. There's 10/box, I change her site every 2 days (her numbers start to go up when we try to stretch it any longer), so one box should get us about 20 days. Plenty of time for a new shipment to come in. We don't need insulin, but the test strips need to be called in now.

I like it better when the cabinet's full. It gives me a weird sense of satisfaction.

I don't have that now.

I feel low.

To Change the Site or Not To Change the Site

2010-06-17T08:25:00.004-04:00

I'm an insulin miser. I love getting every last unit out of a cartridge, and I hate to change it when there's more than a couple units left. Grace only uses about 12 units/day so a couple of units left in her pump can last a long time.

I also hate to change Grace's site at bedtime. New, cold insulin seems to pack a punch, and usually leads to her numbers dropping.

This all leads me to last night...
Scene: Grace's bedroom
Time: 8:30pm, bedtime

Me: Grace has 3 units left. She should make it through the night, right?

Chris: Yeah, she should be fine. That is, unless we need to correct her in the middle of the night for the pizza.

Me: She's 81 now. So even if she goes up she's got room. And she ate the pizza, like, 2 1/2 hours ago.

Chris: She'll make it. No problem.

Cut to my wonderful husband, taking on the overnight checks -
11p - BG 224
2a - BG 257

Scene: my bedroom
Time: 5am

Grace: Mama, my pump is beeping. I don't have any insulin left.

Me: (indecipherable grumbling as I make my way downstairs to get her supplies for a site change)

5:15a - BG 100
7:15a - BG 62

... on second thought, maybe that new, cold insulin would've help with the overnight pizza high!

Weekend Getaway

2010-06-15T09:40:00.006-04:00

I'm planning a trip with my daughter Grace. We're going with two other moms, good friends of mine, and their daughters as well. The trip surrounds a weekend seminar for the girls, so while the kids will be busy all of Friday, Saturday and Sunday, us moms will have some free time on our hands.

Only, when I say "us moms" I really mean my two friends will have some free time, and I'll be spending my time running back and forth from the hotel to check on Grace, and worrying that her blood sugar is okay. See, I was told, and it's written in their information packet, that employees of the seminar will take no responsiblily for those with medical conditions, and if the child isn't fully capable of taking care of herself then I need to remain on the premises.

This is what bothers me, and why I'll spend my time worrying instead of enjoying some much needed "mommy time." Grace is 9, and under normal circumstances IS fully capable. She wears an insulin pump and knows how to use it. She checks her own blood sugar and knows what to do if she needs a bolus or correction. But we all know that when we take our children out of their normal routines, it begins a game of blood sugar roulette. Where will her numbers land? It's anybodys guess!

There's a buffet lunch every day and one thing Grace hasn't mastered yet, and for that matter neither have I, is carb counting. I'll help her with that. We're going out to dinner every night. Three moms, three girls. I'll try to guide her to smart and healthy dinner choices, but with her friends there, who knows. When we're out to dinner with our family, I can guide all my kids, or limit their choices to ones that are more healthy. When we're out with friends I feel bad limiting Grace's choices in the face of her friends eating whatever they want. Blood sugar roulette.

I do what needs to be done to take care of my daughter. But I'm not beyond sometimes wishing things could be different. Wishing my friends could have that understanding that only comes from having a child with diabetes. Wishing Grace prefered grilled chicken and rice over mac-n-cheese. Wishing three days away with my precious daughter meant only bonding and relaxation and memories, not anxiety and exhaustion.

Wicked Sweet?

2010-06-14T21:00:00.009-04:00

There are such creative blog names in the DOC. I love the ones with organ names the most, like I Am Your Pancreas, and Death of a Pancreas. Or those that highlight you child's name, like This is Caleb, A Sweet Grace, and The Ethan and Isaac Show. And then there's the candy references, like Candy Hearts and Where Candy is Medicine.

So what's a new blogger to do when it's time to pick a name for said blog? Call my sister. She's the one who came up with our JDRF walk team name - Grace's Aces. Love it. Do it again. Only this time she came up blank. Nothing.

So I spent some time thinking. I felt paralyzed, like I couldn't begin writing until I came up with a suitable name. I know it sounds silly, but that's how my mind works. I'm a linear thinker. I can't move on to the next thing until I finish the first.

Then one day I was babysitting the absolute cutest little 3 year old girl. She's tiny, even for her age, and she's so soft spoken and polite (quite a difference from my own occasional back-talkers). I asked her if she was hungry for a snack, and in true Boston form, she answered, "I'm wicked hungry!"

Now, those of you who don't know, wicked is a term used here in Massachusetts that's synonymous with really or very. As in, "I'm wicked tired from checking Grace's blood sugar all night long." Or, "The Celtics are wicked awesome and going all the way this year! Beat LA!"

Yet, wicked can also mean something very bad or evil (think Wicked Witch of the West). So Wicked Sweet can mean either very sweet or horribly sweet. Which is pretty much my life as the mom of a diabetic. I deal with the good and the bad. The highs and the lows. The joy and the sadness. The preciousness of my daughter and the insanity of diabetes.

So, Wicked Sweet it is. And wicked sweet we shall remain.

Please Don't Make Me Eat Any More Candy!

2010-06-14T15:27:00.004-04:00

Saturday was the first day since Grace's dx that she was low all day, and nothing I gave her brought her up. We had a bit of a party to celebrate the end of the soccer season (for her sister's team)/ birthday celebration. She had pizza, a low sugar popsicle, ice cream cake, and countless starbursts and jolly ranchers. Still her day went like this:

7:30 - 64
8:00 - 116
9:00 - 140 (pre soccer)
9:40 - 100 (half time, clementine, no bolus)
10:20 - 51 (post game)
11:30 - 46
12:00 - 130 (bolus for 2 slices of pizza)
1:15 - 70 (popsicle, no bolus)
2:45 - 57 (bolus for ice cream cake, give less than recommended)
3:45 - 66
5:20 - 64
5:45 - 60
8:45 - 98

By 5:45pm she had a stomach ache from all the candy and sweets she'd eaten all day, and refused to eat any more candy or juice. She actually uttered the words, "Please don't make me eat any more candy!" We settled on Ginger Ale, which also settled her tummy, and she was then able to eat an English muffin which I didn't bolus for. I lowered her basal at night, right when the rebound high of 250 hit, but that number was actually a relief to see.

So my question is, what to you give your kids to bring up their numbers when they're sick and refusing to eat? She'll take some Gatorade which helps, but other than that I'm stuck and need help. And what foods could I have given her during the day to ward off those lows?

I need help!

Stale Glucagon?

2010-06-10T12:36:00.003-04:00

Hey, all you PWDs and parents of KWD out there!

Just a friendly reminder to check the expiration date on your Glucagon. It might be time to re-order.

And on a similar note... does anyone know if we can donate our expired kits to hospitals for demonstration purposes? I'll call around and let you know if I find anything out.

Sick Day... The Sequel

2010-06-10T09:06:00.001-04:00

Grace woke AGAIN with a stomach ache AGAIN and threw up AGAIN! She seems a little sicker than the other day - though she's felt fine in between. At first I thought her tummy bothered her this morning from the 2 juice boxes she had last night to fight persistent lows. (Sometimes after swimming she's low, and sometimes she's high, so I don't automatically lower her basal rate.)

7p, post swimming - 70 (1 starburst on the way home)
8p, dinner - 121 (45 carbs)
11p - 71 (half juice box...not sure why my husband started the 'half' juice thing, but whatever)
12:15a - 52 (rest of juice box)
12:45 - 88 (lowered basal by 20% for 4 hours)
3a - 63 (another whole juice box)
6a - threw up
6:30 - 137

As the morning wore on it became apparent it wasn't the juice, and simply a return of the bug she had earlier this week. As I learned from a few days ago, I may increase her basal slightly to compensate for the fact she'll be in bed, inactive, all day.

Anyone have any home remedies for icky tummys? I'd love to hear some!