Monday, December 31, 2012

2012 - A review

My sweet Lord, it's been a while since I blogged, huh?! I always have these great blog posts running around in my head, and before you know it, they have left my head, never to return. That will teach me not to have a paper and pen with me at all times. Or at least my iPad.

2013 will be a commitment to blog more. I hope. OK, I will try. Then again, as Yoda said, 'There is no try, only DO.' So, indeed, I will DO more blog posts. If not for your sanity, then mine.

For now, there is a beginning line from each month of blog posts in 2012. The blog post from that month that I found most intriguing. Click on the month if you would like to read the post in it's entirety.

2012 Blog Posts

January
'It's been three years since Grace was diagnosed.'

February
'Grace has the stomach bug.'

March
'At the close of the CWD Technology conference in Conshohocken, the speaker, Tom Karlya - aka 'The Diabetes Dad - spoke about perseverance, hope and the power of one.'

April
'The hardest lesson I have learned about Grace having diabetes is that it's not MY diabetes, it is hers.' 

May
'Grace is a do-er. I mean, the girl DOES things. All the time. In full-on speed.' 

June
'Grace started a summer dance class this past week.' 

July
'9 rolls into 10. And suddenly we are in double digits.'

August
'31. Thirty one.'

September
'Grace has wanted to walk home from school since first grade.'

October
'It's the sleepovers that get me, I think. They let my brain run wild.'

November
'Grace has an annual blood draw, usually in November.'

December
'There was a Grace McDonnell, age 7, in that elementary class at Sandy Hook Elementary School in Newtown, Connecticut. And I thought of my Grace, and other Graces we know, when I saw her name.'



Here's to a wondrous 2013 for us all.




Sunday, December 16, 2012

For my other Grace

There was a Grace McDonnell, age 7, in that elementary class at Sandy Hook Elementary School in Newtown, Connecticut. And I thought of my Grace, and other Graces we know, when I saw her name.

It could have easily been my Grace, or your child. And there but for the grace of God, go I.

A wonderful writer whom I admire, from Philadelphia, Dan Gottlieb, wrote about the tragedy. He is much more eloquent than I. And he included a poem from Ellen Bass.

Amen, and God Bless Grace.

In the wake of the mass murder in a Connecticut elementary school, several people suggested I write something. At first I thought I would talk about how you could explain this to your children; you know the standard psychologist bullet points.

But all of that seemed artificial in the wake of this devastation. The mother of a four-year-old boy told me she cried all day Friday. I said in response t
hat the whole country is crying. Our hearts are broken. Sure, our minds get active with a million thoughts about what happened. But the great pain is because our hearts are broken. So what can be done about broken hearts?

Love deeply and gently what is in great pain. Hold your broken heart tenderly. You don't have to do anything, just feel and allow your heart to cry about this reality of our lives.

Love what is most vulnerable; your children, those children, all children. And hold these tender hearts gently with deep love and painful knowledge that all of your love cannot make them less vulnerable.

As your heart heals, as it will, there will be scar tissue with the wound is. That scar tissue is a reminder to love what is most vulnerable.

Award-winning poet Ellen Bass also tells us how to heal our hearts and the world.


- Dan Gottlieb

Pray for Peace

Pray to whoever you kneel down to:
Jesus nailed to his wooden or marble or plastic cross,
his suffering face bent to kiss you,
Buddha still under the Bo tree in scorching heat,
Yahweh, Allah, raise your arms to Mary
that she may lay her palm on our brows,
to Shekinhah, Queen of Heaven and Earth,
to Inanna in her stripped descent.

Hawk or Wolf, or the Great Whale, Record Keeper
of time before, time now, time ahead, pray. Bow down
to terriers and shepherds and siamese cats.
Fields of artichokes and elegant strawberries.

Pray to the bus driver who takes you to work,
pray on the bus, pray for everyone riding that bus
and for everyone riding buses all over the world.
If you haven't been on a bus in a long time,
climb the few steps, drop some silver, and pray.

Waiting in line for the movies, for the ATM,
for your latté and croissant, offer your plea.
Make your eating and drinking a supplication.
Make your slicing of carrots a holy act,
each translucent layer of the onion, a deeper prayer.

Make the brushing of your hair
a prayer, every strand its own voice,
singing in the choir on your head.
As you wash your face, the water slipping
through your fingers, a prayer: Water,
softest thing on earth, gentleness
that wears away rock.

Making love, of course, is already a prayer.
Skin and open mouths worshipping that skin,
the fragile case we are poured into,
each caress a season of peace.

If you're hungry, pray. If you're tired.
Pray to Gandhi and Dorothy Day.
Shakespeare. Sappho. Sojourner Truth.
Pray to the angels and the ghost of your grandfather.

When you walk to your car, to the mailbox,
to the video store, let each step
be a prayer that we all keep our legs,
that we do not blow off anyone else's legs.
Or crush their skulls.
And if you are riding on a bicycle
or a skateboard, in a wheel chair, each revolution
of the wheels a prayer that as the earth revolves
we will do less harm, less harm, less harm.

And as you work, typing with a new manicure,
a tiny palm tree painted on one pearlescent nail
or delivering soda or drawing good blood
into rubber-capped vials, writing on a blackboard
with yellow chalk, twirling pizzas, pray for peace.

With each breath in, take in the faith of those
who have believed when belief seemed foolish,
who persevered. With each breath out, cherish.

Pull weeds for peace, turn over in your sleep for peace,
feed the birds for peace, each shiny seed
that spills onto the earth, another second of peace.
Wash your dishes, call your mother, drink wine.

Shovel leaves or snow or trash from your sidewalk.
Make a path. Fold a photo of a dead child
around your VISA card. Gnaw your crust
of prayer, scoop your prayer water from the gutter.
Mumble along like a crazy person, stumbling
your prayer through the streets.

by Ellen Bass



Wednesday, December 5, 2012

Dexcom G4 and the G-mess

Grace has worn the Dexcom SevenPlus since late September. Completely paid for by her insurance. Sensors and all. They approved it not through her DME (Durable Medical Equipment) benefit, but through her prescription benefit. I really don't care if the approval comes through her vision or dental benefit, hey, she got approved! We were thrilled.

All was well, and even better, when Dexcom alerted us that since we received our SevenPlus in late September, we would be eligible for the free upgrade to the Dexcom G4, that sweet piece of technology that everyone is raving about. Oh, the range! Oh, the colored screen! Oh, the alerts! I finally actually lucked out and had some luck in the diabetes game - a free upgrade to the latest and greatest. Yes, sign us up.

I looked forward to the arrival of G4 around the end of November.

And sure enough, Dexcom delivered a pretty pink Dexcom G4 to our doorstep a week ago. What a beauty. We were so very excited. All I needed to do was call our supplier and order the new sensors, right?! Right.

I called. Hmmmm they said, we tried to process the G4 sensors, and they are denied under her DME benefit. We will try the prescription benefit. Hmmm, not approved through that either.

Called our Dexcom rep, who has been nothing short of remarkable and patient and knowledgable. No, she says, they ARE approved, I know it. She tries to call. Nope. Not approved. And processing now through DME. What the what???!!!

OK, we will just fill out a Certificate of Medical Necessity and write a short note, and get the endo to sign it, right?! Right. We are going in for our three month endo appointment anyway, so why not. Our endo signs off on the CMN, and the short summary, to our health insurance company.

I got a call two days ago from our endo, who gives me an update. And it will shock you, same as it shocked me. The secretary at our endo's office actually starts to laugh as she tells me. Not cause it's that kind of funny, it's more like incompetent funny than anything else.

Grace's health insurance is denying her the G4 sensors, because they have no record of her having a Dexcom CGM at all. Nothing. Not one receipt. Not one payment. They have no idea what we are talking about, because, according to them, they have paid for NOTHING. She does not have a CGM.

I call them and talk to the person who called our endo's office. I start to chuckle and say, you know, Grace is right now, wearing the CGM that YOU paid for. She has a receiver, transmitter and sensors, two 8-pack shipments so far of sensors. Silence on the end of the line. I tell them, I assure you, the insurance company you work for paid for them, in full.

They have no record of payment for her CGM. They have not one receipt they are telling me.
And we still have no G4 sensors.
But we do have one pretty pink receiver sitting on our dining room table.
I think the ball is in my court.
Game on, health insurance company.




Saturday, November 24, 2012

Pulling the site

I think it's a bad site. I think I should pull it.

You should know that these thoughts above NEVER run through my head. I NEVER think the Pod is malfunctioning or not delivering insulin or not doing it's job. I truly believe it just works, all the time. Maybe I am just naive. But I honestly never think it's the mechanical device that screws up, I just think it's ME.

The last two days have been nothing short of messed up. And if I could curse a lot on my blog (I guess I can, I mean, it's my blog, right?! But I will spare you) there would be a heck of a lot of curse words before the 'messed up' part of that previous sentence.


And this is what went down. I think I lost my mind somewhere over the course of the last two days. I don't even know right from left, bolus from basal. Ever get lost in the game, my friends? I was lost.


Thanksgiving was fine. Bolused, a little too much I think, for the pumpkin pie, which she ended up not eating. Fine, substituted a cookie for it and all was well. Ever since then, the diabetes gods have laughed at me.

Dexcom. Up and down. Up and down. Living on a merry-go-round.
Yeah, nice little waves of food eaten, then back to 'in-range' on the Dexcom - yeah, not.
No highs or lows - yeah, not.

Penny, you should totally pull the site.

This thought again did not enter my head. Not at all. I am thinking I am screwing up big time, and maybe I am. There is something definitely wrong. I always run a 50/50 basal/bolus split, and sometimes even a 60/40. Grace uses, on average, about 31 units a day.

OK, ready to see what she used yesterday?
45.70 units!



Penny, please, for the love of all that is holy, PULL THE SITE!!!!

Nope, still gonna ignore the fact that I should pull it. I will be damned if I will pull something that I think is working. Even though it's not. Sometimes, my thinking goes south.

Penny, it is CLEARLY NOT WORKING.

You know, what if I just temp basaled the crap out of every meal? I mean, like +75% for 3 hours? Hmmm, still not budging from a 245 BG with a straight constant arrow. Even with 1.85 IOB and the increased temp basal. What else could it be, Penny? What else could it possible be???

Penny wracks her head. Bangs it on the floor. Curses the diabetes gods.

Penny, honestly, I am starting to question your thoughts processes. It is THE SITE. 
THE SITE. 
I REPEAT, THE SITE.

I know! Maybe I will change the site. Maybe that will help.

I pulled the site. It is pink and oozing something. One of the first times I have ever seen something like this on Grace.

OK, so I should have listened to my little diabetes-voice.

Next time, 45.70 units into the game, I will pull the site.

Carry on, folks.







Wednesday, November 14, 2012

WDD 2012

Even Scotties tissues celebrate World Diabetes Day 2012!

I noticed as we were putting on a new Dexcom sensor this evening. 
I want to go buy every box of Scotties now!!!!




Saturday, November 10, 2012

The Blood Draw

Grace has an annual blood draw, usually in November. Her endo orders it to check on her thyroid function, screen for celiac, check her cholesterol, and other things that only diabetes brings. It's sobering every November. It's when it hits the hardest, when you realize that they are checking for the complications, and she's only 10 years old. They are checking because it happens.

It always feels to me as if I am waiting for the other shoe to drop.

My attitude with Grace for the annual blood draw is the ole 'Just Do It.' We just do it cause we take care of ourselves, we follow what the doctor wants us to do to stay healthy, we do it cause we want to live long and healthy lives. We don't like it, but we can do it.

And every year, we rise early, set off without breakfast, and drive on over to the Lab. And we celebrate afterwards with a McDonald's breakfast. She looks forward to it every year. It's what gets us through, knowing when we are done, we get to eat together. I fast too, in solidarity with her. She shouldn't be hungry alone.

This time at the Lab went a little differently than the previous three years. Here's what went down.


We are sitting in the waiting room at 7:45 AM. It's a fasting blood draw, as usual. We brought the median age down in the waiting room by about 60 years. Not even my pleas about a fasting child with Type 1 diabetes got us a 'fast pass' to the front of the line. They are hardliners in this Lab.

The more time she sits, the more time she has for thinking about the blood draw, how it will hurt, remembering the past times. If we could just jump the freaking line, get in and get out, all will be good. But we are left to sit and contemplate the many ways we all don't want to be here. Grace starts to cry, silently. I hold her hand, and tell her how brave, strong and super she is.


The nurse/lab tech calls her name from the waiting room.

Grace?

Grace gets up, from our 25 minute wait to get her blood drawn.

Grace walks back to the cubicle, takes off her coat and sits down in the chair. She pats the wide seat next to her, and I sit beside her, with my arm around her. She dutifully lays her arm on the fold down arm of the chair. She stretches it out, nice and straight.

She starts to cry, again.

I know, it's OK, we will get this done and be out of here.

I smile at the lab tech, who up until now, could really give a crap, that one, Grace is a young child, two, that she is crying, three, that she is wearing two devices on her. The lab ignores it all. Like it's not happening. Then, she sees Grace crying and says:

Why are you crying? This is nothing to cry about. You should not cry.

She proceeds to open the needle package and cap it into the syringe, right in front of her. I look up, hoping to meet the lab tech's eyes. I want to scream via x-ray vision with my eyes - REALLY? This is NOT helping, you actually showing her the freaking needle! Could you do that over by your lab station, with your back to us? Cause if you had an ounce of compassion, you would.

She tightens the rubber tie-band on Grace's arm. She gets the needle out and taps for a vein. Grace tries to look at her arm. I use my left hand to create a horse blinder on her, and turn her head into my chest, shielding her from looking. I tell her, remember, just don't look. 

Feels like a pinch sweetie, and then it's done.

Grace is crying and saying to me 'No, Mama. Please. Please.' and she switches her little behind in the seat, thus moving her arm.

That was enough for the lab tech. I guess that's what broke the camel's back.

I need some help in here right now! She's pulling her arm back!

I say out loud - Please, just give her a minute. There's no need for anyone else to come.

The other lab tech comes quickly over. She straightens Grace's arm out straight, and sees Grace. Really sees her for the first time in all this time.

It's OK sweetie, it will be over in a minute, I know you are scared, but let's just get it done. 

The lab tech is swift. She gets her three vials and pulls the needle out. Slaps on a cotton pad and covers it with the extra sticky tape, as one last act of cruelty I suppose.

And she hands Grace a cup to urinate in.

Grace looks at me, and I can see the thought in her head, almost like a bubble over her head 'What am I supposed to do with this?'

Let's go to the potty honey, you pee in the cup. Mama will help, I will hold it for you.

And we go in, but Grace is so frightened, that like girl, she cannot pee. She has herself frozen. We have a good chuckle about this, and the laughter frees my Grace again. She feels bad about being so upset. I assure her that no one likes getting their blood draw and that is was perfectly OK to cry. No shame honey, no shame.

I catch what I can, and there is pee all over the cup, my hand, the seat. I do my best to clean up.

I wrap the cup in a paper towel and hand it back to the lab tech.

She says Have a good day.

I say nothing. There is nothing to say. We are done. We got it done.
And it will never, ever, happen like this again.

I assure Grace that it will never be like this again. That next time, we don't like the way it's going, we are going to stop it, say something and get someone who will be nice and compassionate. I explain that today, it was all happening so fast, that by the time I was going to say something, the moment was gone. We would have spent even more time there, and not got it done. I try and tell her that Mama will always protect her and say when something is wrong, and she should too. She nods. I feel like I have failed in showing her that today. That I acquiesced to get it done, and it feels awful.

I say one last thing.

You know Grace, every time we have a new situation, I always tell you it's a learning experience, right? Well, today was a learning experience. Mama learned. I always tell you we should learn, right? 

Mama learned today.

Sunday, November 4, 2012

Diabetes at Halloween

Halloween baby, it's all about the candy, right? That and trick or treating and of course, the annual hospital 'Diabetes Candy Exchange' for Type 1 kiddos. We did it all. With some bumps in the road of course, cause you need a few bumps in the road to keep it interesting, right? Right.

Grace has an annual Halloween parade around her school, culminating in a classroom party. Of course I had to go, this is her last year of Elementary school! Her last parade. Bittersweet? Nah, it's all good. After about 13 years of this parades and continuous kids through this school and parades, I am done. Toasted. Cooked. Been there and done that for a looooong time. All good things must end, and the memories are great, but if I never attend another Halloween parade and classroom party until I have grandbabies, it will be alright.

Grace was a candy corn gal. Which I found extremely funny.


Long parade. 600 kids. It's endless.
Yeah, there's Grace!

Then back to the classroom party. There was a lot of food. Yes, some of it's healthy, and some of it is not. You know what? I have completely surrendered the battle. Honestly. I started to battle the foods at Elementary parties two years ago, and it went nowhere. I will let others who come behind me take on the cause. It is what it is, and we bolus the heck out of it.

Oh, but what's that? The shriek of an alarming pod as she is line to get her food at the party? Of course it is! Right there in the line - EEEEEEEEEEEEEEEEKKKKK! And Grace uses her hands to cover her Pod on her tummy, to quiet the sound. So, thank goodness I was there and she didn't have to call the nurse down to help her change it, which would have been 10-15 minutes, as opposed to our Mommy-Grace change rate of about 3 minutes, tops. We can get a Pod off and a new one on in record time. There should be an Olympic medal event for it. We would totally take bronze or silver.

The remnants of the Pod change. Encased in plastic, to take home.
3 minutes, tops. Rock on.

Halloween night. Trick or treating with the neighbors. We all go around in a group with all our girls. Fun times. Bolus on the run. That's me, shooting a .80 bolus for a piece of candy she ate while walking. 

A scary bunch.

Juggling a flashlight, D kit, PDM and a candy bag.
I win!

Last but not least, the Diabetes Candy Exchange, run by our local hospital. Its an annual event where they invite all the Type 1 kiddos to come and drop off any unwanted candy, and get prizes instead. They create cute gift bags for each kid, have food and games, face painting, music, Zoo on Wheels and raflles. You can read about our other years of attending here in 2010 and here in 2011.

Lo and behold, who was there? My Twitter and Facebook friend, Jen, with her daughter Grace. This was the first time we met in real life and it was fabulous. Jen also blogs over at Grace's Courage, check her out. A good time was had by all, and we even had a little D-Mama meetup too!

Bins full of candy that kids turned in.
Yes, Grace did reach in later when she had a low and snatched a Hershey bar.
The nutritionist looked at us funny.
Hey honey, this is real life with D, quit looking!

The Phillie Phanatic came too! He was a hit.

OK, they serve pizza! Every parent says 'UGH' when they see it.
There is a nutritionist right there and every year, PIZZA!
At least this year they had some salad, veggies and chicken fingers too.
45g a slice, with a 40/60 bolus split and extend bolus for 3 hours.
3 hours later - 108.
I won.

And that, my cyber friends, is our latest Halloween update. 
I'm tired.




Monday, October 29, 2012

D Kit, Apple Chunkin' and the Tree

I search for D kits any time we are anywhere near cosmetics booths, counters or stores. My eyes scour Target for their latest cosmetic kits, which suit our needs perfectly. One little kit to hold everything - PDM, lancing device, lancets, insulin, complete Pod change, glucose tabs, extra Unisolve, extra SkinTac and SkinPrep, HypoFix tape, extra lancing device, syringe. You get the picture. Everything.

Here are our other D kit, the Bag of My Dreams.

And I scored one at the new Ulta beauty store that opened in our local mall. WIN FOR ME!





On a completely different note, we went apple chunkin' at our local orchard. They take all the old rotten apples and you can place them into a sling and fling them as far as you can. They even have targets you can hit! It was a blast!





An yet another note. Hurricane Sandy is hitting our area. Lots of rain and wind and damage. And I am scared of our neighbor's tree falling on our house. So, tonight, we slumber in the basement. Hopefully with electricity. Over and out folks. Stay safe.







Tuesday, October 23, 2012

Feeling like a failure

There, I said it. And I know what the comments will be:
Penny, you are so not a failure.
You are doing such a good job.
You are doing the best you can.

And on other days, I might agree. But today, tonight, I feel like a complete and utter failure as a pancreas for my daughter.

The last six weeks have been nothing short of awful with blood sugars. She is high, then she is low, she is sailing on a smooth course, then BAM, she shoots down like a rock. She shoots over 350 and stays there for hours while I throw what seems like water on her highs. We treat a low and she shoots high. She gets stubborn lows and hangs in the 50s for an hour. She is high one day, low the next and I haven't changed one damn thing. She eats the same foods from one day to the next and her numbers are no where near each other on those days.

I feel like I want to throw something out the freaking window.

I feel frustrated, because with all these highs and lows, she misses class time. She is with the nurse treating the low, adjusting the high, and she misses class. Class that she loves.

She got her report card and it showed a damn near gifted child, who is so far above the other kids that she scored percentages that are near what the guidelines are for exiting 5th grade. In October. And I think, damn, just think what she might do if she was in class all the other time?!

And she broke down tonight and cried about it all. How she wishes she didn't miss any class, and she wishes that she could just have a day of good numbers. And I told her all the right things  - that it will all be OK, that we will get on the right path soon, that Mommy will once again sit with the basals and corrections and ratios and adjust it all, so that tomorrow honey, no lows or highs.

And I feel like I lied to her. Cause tomorrow is gonna be one great big sucky rewind of today.
And the day after that. And after that.
On and on and on.

Cause I feel like I am lost and I cannot find my way back. That I am lost in numbers and ratios and counts and adjusting. Just completely lost. My head swims with the numbers and the damn, freaky graphs on her CGM, which look like mountains and hills and glaciers. Yeah, they aren't supposed to look like that, are they? They do. Every damn day for the last three weeks.

I feel guilty cause I am the programmer of the pump. She's 10, she doesn't do that yet. I control the almighty insulin. And the lows make me feel like shit. And they make her feel like shit. And the highs have me angry. And they make her angry.

I'm the puppeteer of a pump.

And I keep it all from her. And I tell her it's OK.
I feel like I am lying.



Saturday, October 20, 2012

Sleepovers

It's the sleepovers that get me, I think. They let my brain run wild.
She gets invited to them more and more. It's what 10 year old girls do. They sleepover.

And she is prepared. It's not that she's not.
I have faith in her ability to care for herself and do what she needs to do.
But I end up putting some of my worry onto her, and that's not fair.

It's what I am thinking that's the problem. It's what I ask of her.
You can eat whatever you want, honey, just dose. Promise me you will dose.
And she looks at me like I am smoking crack.
Of course I will dose Mom!

How often do I have to check, Mom?

I'm fine if you check just before bed, and again before breakfast. Otherwise you can roll with what Dex is telling you.
I know, you don't want to check with all your friends there. It's takes time away from the fun.
Please be safe though. You know sometimes Dex lies.

Yes, Mama, I know. I run high, I check. I run low, I check.

I tell her to call me at home before 'bedtime,' whenever that may be.
The phone rings at 9:45 PM.
I answer on the first half-ring.

We are in our jammies Mom, gonna watch the One Direction DVD.
I just checked. I'm 124 with my PDM. 
Dex says 116 with a diagonal arrow down.
IOB is .25. We had birthday cake. I guessed 30, it was a big slice.
Should I have a juice?

Damn it. If she is at home, no, no juice. Ride it out, see if the beautific numbers hold.
But she is there, and I am here and the arrow says down.

Yes honey, have the juice.

Remember to put Dex under your pillow tonight. You will hear and feel it there. 
Keep your juices and granola bars nearby.

Yes, Mom. Yes, I KNOW.

I know you know, silly bear. Have fun. 
Call if you need anything.

And before my own bedtime, a night of sleeping the whole night through, which I know will not be true, because this Mama wakes at 2 AM like clockwork, D-daughter here or not.
It's my ritual.
It's my way of knowing.

I say a prayer.
That Dex wakes her.
That the 124 holds steady for her.
That this sleepover, her sleepover, is not touched by a Mama's worry.


Friday, October 19, 2012

DSMA Live - Thank you!

I was on DSMA Live with the lovely Cherise Shockley and Scott Johnson. It was a hourlong blast with those two. We discussed Type 1 diabetes, of course, but also discussed autism, special needs, and the DOC. The hour flew by.

If you would like to hear the recording of the hour, here is the link:

http://www.blogtalkradio.com/diabetessocmed/2012/10/19/dsma-live


Thank you, DSMA Live, for having me on. It was an honor and a privilege!


Monday, October 15, 2012

DSMA Live Thursday 10/18/12

Hey guys and gals! Guess who will be on DSMA Live 
this Thursday, October 18th at 9 PM, EST?

Me!

Please call in so I can chat with all of you!


Saturday, October 6, 2012

Dexcom launch

And we are live in 3.....2....1....





Monday, October 1, 2012

We are so much more than you-know-what

Our family is so much more than what-shall-not-be-named. 
Here are some snapshots from our life without it.














Saturday, September 22, 2012

Walking home




Grace has wanted to walk home from school since first grade. First. Grade. She's in 5th now, and my promise all along has been, the same as her sister's was, that in 5th grade, she could walk home from school. You should know that all my kids are walkers - to Elementary, Middle School and High School. Yep, no bus. Ever. Pennsylvania state law says that if you live less than 1.5 miles from school, you walk. Guess where we live? About 1.3 miles from the schools. So, we walk.

So, in the past, we have walked home together from school, and on occasion, we have walked to school together, but for the most part, she jumps in the care and I let her off at school. It's the price you pay for being the third child and last out of the house for school each morning. By the time I am up and sending the other two to High School, the care seems very easy. So, the care it is.

This is the year for walking. She walked home last Thursday, with another friend who lives in the next block, who always walks home. She had two conditions for walking home  - one, she had to test at 3:15 PM, when she got out of school, and if she was below 120, she should have a snack or a juice. Two, she was to text me when she left school and when she arrived home.

So I alerted her teacher and the nurse via email:


Hi,

Grace has wanted to walk home since, well, first grade. Sometimes I have met her at school and we have walked to and from school together. We live just off G..... Rd., and the walk is about 10-15 minutes. Well, I have finally succumbed and told her she could walk in 5th grade, so it's here!

Grace is going to walk home tomorrow, Thursday, with her friend and our next-block neighbor. She walks every day. They plan to meet right outside the red line doors, her normal exit doors, and walk together. She knows Grace well, as they were in R....'s class last year together too.

Grace has a couple requirements. She MUST test at 3 pm, and if she is under about 120, needs to have a juice. She also needs to text me when she leaves school. She has her cell phone with her (at home, when she plays with a neighbor or leaves the house, she has a phone to always contact us).

I just wanted to let you two know what's happening. Grace is growing up and she wants to be independent. I have to let her do things that others would do at her age, regardless of diabetes. I feel she's prepared, she knows what to do and not do, and she is with a friend. Let the walking, every once in a while, begin! :0)

Thanks,
Penny

And she did it both. She checked her BG and was 132, so no juice or snack before she came home. And she texted me. 'On my way home. Love you.' Simple and concise. And when she got there. 'Home now. Love you.'

Walking home, as simple as it sounds, check this one off our list.

Monday, September 10, 2012

38 at school. I rock.

38 at school today. Her first full day of 5th grade.

I rock, don't I?

Would you like to know why she had a low of 38?

Here goes. And I take full responsibility for the foolishness that is to follow.

Grace now eats lunch at 11 AM in 5th grade. Last year she ate at 11:45 AM, in 4th. Her breakfast I:C ratio runs from 5:30 AM - 11 AM and is set at 1:10. Her lunch ratio runs from 11 AM - 4 PM and is set at 1:18.

Do you see where this is headed?

I forgot to roll back the I:C ratio to accommodate an earlier lunch.

So, the PDM of her OmniPod dosed her for a 42g lunch, with a BG of 124.

Dosed her 5.15 units.

Cause she tested her BG at 10:55 AM for her 5th grade lunch. Of course she did.

She should of gotten about 3.5 units, give or take. That's close to 2 more units than she should have.

Thus, the 38, 3 hours after lunch.

Two juices and a snack and back to 115.

I think I'm gonna go accept the Mother of the Year award now.

God, I hope it's gold.

Wednesday, September 5, 2012

Meri and Ryan Schuhmacher

My DOC sister-friend, Meri, lost her beloved husband, Ryan, On September 2, 2012. Ryan had bravely and valiantly fought cancer. His battle is over. Meri and the boys, who loved this father and husband like no other, were with him, by the grace of God.



My heart goes out to my friend, and I hope she feels the love of the DOC surround her and hold her at this time.

If you care to support Meri and the boys at this time, please consider giving to the Schuhmacher Family Miracle.

All the love in the world to you, Meri.




Wednesday, August 15, 2012

Lifetime

Grace took this picture with her camera at diabetes camp last week.

When I saw it on her camera, all she said was...

'Yep. That's exactly right.'




Saturday, August 11, 2012

Camp cures the soul



I've said it before and I'll say it again and again. For my daughter, it cures her soul. The camaraderie of a whole week of same-ness. It clears out the cobwebs of 'I am the only one with this disease' and the 'I cannot do this one more day' and the 'If only someone knew how I felt.'

For six whole days, people completely understand.
For six whole days, people check and treat and change pump sites.
For six whole days, everyone counts carbs.
For six whole days, everyone knows what you are talking about when you say bolus, basal, temp basal,  and extend.

For six whole days, diabetes rocks.



This year, I walked the same walk I have done the last two years to pick her up. And I missed her so. But this year, there was a complete sense that everything was right about it. Her decision to go. Our decision to send her. Her friends and cabinmates. Her counselors. It all seemed so very right. It's where she is meant to be for part of her summer.



All the campers assembled and sang for the parents. Cheesy, and completely right, camp songs. Every. Single. One. of the the kids sang, even the teens. Cause when they launch into the 'pirate song' at camp, you better damn well sing. And a community is formed. In six short days. And by God, it is beautiful.



They end every year with singing the unofficial 'official' camp song - 'Waltzing with Bears' while the head counselor, a man with more unbridled joy than any one human being should have, plays his instrument. And every one sings.

And when the head counselor says 'One more time, until next year!' everyone belts out the song, and sways in time to the music.

video


For six whole days, community.


Thursday, August 9, 2012

Diabetes Camp - Year 3



Grace is at her third year of diabetes camp. It's different than year one and year two. There's a different feel in the air - she knows what to expect, she knows many of the kids, she remembers her counselors and looks for them, she says hi to the camp staff like it's old hat.

This is what it must be like to come home every summer. I see it in her eyes.




She has been looking forward to this week for five months. Scratch that. She's been looking forward to this week since the moment she left camp, in 2011. So make that 360 days since she left. The countdowns start, the asking about if I paid for camp yet starts, the asking if I got anything in the mail about when camp is this year starts. It starts the minute we get home from this year's camp.



This year, as we sat with the endo who will be in charge of her cabin for the week, she greeted Grace with a Hi Grace! How are you? Whatcha been doing since last year? which caused a giant smile on Grace's face.

Her camp endo remembered her.

We went over basal settings, carb ratios, target BGs, and all the math associated with diabetes. We talked about her needing a temp basal to go swimming. And her endo chimes in Yeah, I know she tends to go low after swimming. The power of memory. And of being remembered. It made me smile.

Her endo asked Grace what some of her goals were this year at camp.

Have fun. (Isn't that fantastic that that was the first thing she thought of???)
Make new friends
Learn some new d stuff (her words)

Yep, I said, that's about it. She can also show you that she can completely change her Pod all by herself, start to finish, so she might want to show you that. Her endo smiled, cause frankly, she could do that last year. Always good to just show people again, I said.

And we ceremoniously walked over to her cabin and made her bunk bed for her. She got the bunk next to her DBFF. That made everything right in her world. And soon enough, it was time for us to go. The shortest time we have ever had dropping her off.



OK, Grace, have a great week. See you on Friday.
I'll miss ya Mom and Dad. See ya Friday.
Be good.
I will.

Pick up is in one day. Oh how I miss her.

You know, there's only 360 days til Camp 2013.




Friday, August 3, 2012

Fightin' 31

31. Thirty one.

That's what her meter read when she said to me, in a singsong voice 'Mom, I feel a little looooooooow.'

Beep.
31.

I immediately suspended her basal through her OmniPod PDM. And my brain goes into 'Did I overbolus for something at dinner" How the hell could she be 31? Ok, do I have the glucagon here? Yep. Crap. 31.'

I grab a juice, nectar of the sweet gods, and rip off the straw casing and shove that little straw into the silver hole.

Grace won't drink it.

'Mama, nooooooooo juice. Nooooooooooooooo.'

Huh??? NO JUICE? What the heck? She's never refused juice before.

And as I think this, her eyes get fluttery and begin to do a little roll back into her head.
And she starts to lay down.

'NOOOOOOOOOOOO. You MAY NOT lay down. You CANNOT go to sleep.
DRINK the juice.'

And she starts to cry. And mumble.

And I shove that little straw into her mouth and command her to
'DRINK THE DAMN JUICE. NOW.'

Sip, sip, sip. Grace starts to drink. I hold her head.

And I whisper in her ear.
'You are having a low. It's 31. You need to listen to Mommy. Drink the juice.
You need to help yourself. Help yourself. Mama is trying to help you.'

She finishes the juice. I let her rest her head against me. She closes her eyes this time, but she has one juice in her. I let her close them. I still do not let her lay down.

'Now we are going to drink another one. Now. Sip.'

And she does. She looks her blue eyes up at me and says 'Help yourself.'

Yes, honey, help yourself.

And if you cannot do it, Mama is here.

Wednesday, July 18, 2012

Being 10

9 rolls into 10. And suddenly we are in double digits.

Everyone told her that when they wished her 'Happy Birthday.' Everyone. They would say 'Whew, now you are in double digits, missy!' 'Wow, double digits for you!' and after we picked up her cake at the grocery store (no judging, I don't bake and they made a Justin Bieber cake. Word. I really can't do that at all) she turned to me as we walked to the car and said 'Mom, what does everyone mean by now I'm double digits and why do they raise their eyebrows and look like 'WOW'?

'Well, honey, you are 1-0 now and that is two digits together. You were one digit for 9 years, and now you will be two digits for a long time. 21, 32, 45, 68, you know. Sometimes people even make it to THREE digits. Like 1-0-0.'

'Ok, got it. Still seems silly, but I got it. I'm gonna be in the double digits for a long time, so when you finally get there, it's like you've arrived.'

'Yeah honey, you've arrived.'

And being 10 totally rocks.

Here's to arriving one day, God willing, at the triple digits, sweetie.