Thursday, November 20, 2014

12 and 5.9

Endo visit and we get the big examination room in the corner. Windows all around on the 2nd floor. It feels like a fishbowl. Win for us! Grace starts to dance around the room, showing off what she's learned in dance class. Teaching me to do 'The Pelican' which involves kicking one leg up, all while throwing your hands behind you. I realize I am not good at The Pelican. Grace is though, and we laugh.

Give us the big room in the corner, and we are gonna dance, baby.

Her blood draw is good. Her triglycerides are great. Her celiac is negative. Looking good. She's grown an inch in three months. Her endo marvels at the hint of mascara she wears, asks if she's dating anyone and Grace dutifully rolls her eyes. Six years after we started this business, and who knew I would be in this room when I actually laughed about it all.

I was in this fishbowl room six years ago, with a newly diagnosed six year old. I was scared and I felt alone and I felt I could not do it. I did not even think of, or envision, a moment like this in my life. Six years from now? I didn't know if I would make it the next six days, let alone six years.

Funny how a room can bring it all flooding back.
Grace mentions it to me.

'Mom, the last time we were in this room, I was little. I remember the windows and how big the room was. And we talked about food.'

'Correct you are, my gal. We did. We talked a lot about food back then.'

And then it's over. Her remembrance of it all is that of a six year old. The food, she recalls we talked about food. I guess that's good. She doesn't say I looked scared back then. She doesn't say, 'and Daddy was with us, you remember Mom, and he looked so very sad.' She doesn't talk about how she used to scream and scream and scream when we gave her shots. Remembering some things when you six is selective. I thank God for small miracles. She remembers the food.

The nurse peeks her head in and says '5.9.' I must have looked shocked, cause she says after it. 'Really, 5.9.'

Grace looks at me. I smile. She says 'Is that good?' and she smiles. We've never gotten below a 6.0 A1C yet. 6.2, yes, Mostly we hover in the 6.4 area. I'm fine with that. I wasn't even trying for tighter control and finer tuning, yet here we are. 5.9

I tell her endo when she enters that the machine must be broken. She asks me how I do it. She tells tales of teens with 9.5, 10, 11 A1Cs and she looks worried. I tell her I spend time fine tuning, I don't let highs hang out and mostly, and here is my key, I attack night time with a vengeance.  I have the least variables at night. I can control more. I tighten the reins then. It's a huge part of her 24 hours, those 8-9-10 hours she sleeps. I try to always be in range then. Then I tell her once again her A1C machine is broken and it can't possibly be right.

I scroll through her PDM. 40% of the time we are in range (80-150), 40% of the time we are high (above 150) and 20% of the time we are low (below 80). I think, well, it's good, the 20% of the time low. And I wonder what Grace's standard deviation is. Aw hell, I'm not gonna look that up, it is what it is.

That's all I got, I say. I impart no wisdom beyond that. Her endo looks at me, 'that's it?'
'Yep, that's it. I'm afraid I haven't anything else to add.'

'You know what? I do have something else to add. This is a great room for dancing.'
And we ask her to join in.


Tuesday, November 4, 2014

Candy Exchange Meetup

Every year our local hospital, the one where Grace was diagnosed six years ago, has a Diabetes Candy Exchange. They want us to give our precious candy over to them, in exchange for other goodies. Breaks my heart to see all that beautiful candy being given away.




What I don't understand is how on God's green earth, these Type 1's give away Smarties and Nerds. People. People. People. They are among the best candy to bring up a low. They are pure sugar and they work fast. Yet I see them thrown in there among the Laffy Taffy (pull out all your teeth candy) and the unwanted Baby Ruths (no one likes those). Sad.

Many years I stick my hand right into the cans where kids are depositing the giveaway candy, and sort through it, pulling out handfuls of Smarties and Nerds. It's like Dumpster Diving for Diabetics. Sure, everyone looks at me, but I got over that about ten years ago. Look away people if you don't want to see me getting the best candy. Look away.

Alas, this year I did not Dive. The darn cans were too close to the nurses sitting at the registration table! It was even too close for me. Plus I was gonna SO embarrass Grace if I did anything like that. Like that has ever stopped me before, right? I didn't even Dive, everyone should be so proud of me. I know there were Smarties and Nerds in those cans, I just know it.

They have food, with the carb counts on them, bless their little hearts. They have gluten free food - bless them even more! No drinks though other than water. I'm not sure they believe even in Crystal Light. They also have random food on the table - a big bowl of unwrapped cheese sticks. OK, then.





The best part of the exchange is hanging with friends. When Grace was little, it was all about the activities -the arts and crafts, the face painting, the pumpkin carving, but now it's all about who she gets to see and hang with. Luckily this year, her BFF from camp could come. She's only 1 year into the D, and lives 5 minutes from our house, and we met her at camp this year, how crazy wonderful is that???

Another camp friend, the illustrious same-name Grace came too. They made a trio of blue. They communed, they chatted, they made arts and crafts together. They wore their Walk shirts, Grace even matched with her blue sweatshirt! and had their faces painted the same. They hung out.



That's the beauty of the candy exchange  - it's really disguised as a get-together for the young T1s. And a way for me to increase my candy stash for lows. That will have to wait for next year.

Oh, Else sang karaoke and Olaf came. He was delightful. His head didn't come off though. Don't ask me how I know.




Sunday, October 26, 2014

JDRF Walk 2014

Our annual JDRF Walk was today. A beautiful, bright, sunny day that couldn't have been more perfect. The mood was lighter this year. I felt it. People felt hopeful. There are so many things in the works for people with Type 1: the bionic pancreas trials, Nightscout, Dexcom Share. It's the age of invention and innovation. Technology beginning to make our kids lives better. It's the most hope we have had in a very long time.

The Walk brings about so many feelings, six years into diabetes. The newness has worn off. The daily grind has set in. Puberty has set in, and she's growing up. I am weary at times. And so is she. I look up at the sun and it feels so warm, but the wind whips my face. How fitting. The community I am in, standing among 10,000 walkers, warms me to no end. The daily grind is my wind.



She is thrilled that her BFF from diabetes camp, who lives no less than five minutes from our house at home, is here at the Walk. They hug and they tell each other they love each other. And part of me is so happy for her, to have someone she loves, with diabetes, so close to her. And I think at the same time, damn it, yet another kid. It's the yin and the yang of diabetes. Am I glad she's had it because it makes her who she is? And in the next breath I curse the very day she got it.



And we walk. We walk down the road by the river in my city. It's glorious, the sight of all these families, all these kids, supporting each other. The t-shirt slogans are funny, truthful, and make me smile. We find humor in this damn situation. There isn't one family I see during this walk having pity on their kids. They all say 'Look around you, there's a kid with diabetes just like you. Look, another one. Look, she's older and she's here. Look at her pump. Rock that Dex!' And isn't that something? In the midst of all the life altering it brings, we come together and say it's alright, cause we have each other. It fills the gas tank to go another 1,000 miles.



As we end the walk, the JDRF leaders and volunteers all ring cowbells. And we cheer as we come across the finish line. We made it, one more year.


JDRF Walk 2011
JDRF Walk 2010

Wednesday, July 30, 2014

Insulin Addict

This is Grace's 'handle' on a game app she plays. Insulin Addict.
I laughed, cause she is.

And oh, this addict uses A LOT of insulin throughout her day. She's up to about 50 units per day. She's maxed out the 150 units that I use to fill her OmniPod pod, so now I up it to about 175 units for three days.


It is what it is.
It's puberty, that is.
12 going on the preteen years.
Growth spurts, hormones, growth spurts, hormones and did I mention, the GROWTH spurts?!
Like, growing 2 inches this past year and on track to bust another inch in the next six months.
All that growing requires a lot of insulin. Both in basal and in bolus amounts.

Carb ratios that have gone from a breakfast of 1:15 to currently 1:8. Lunches are now 1:10 and dinners have just been reduced to 1:12.

It's the basal rates that make me shake as I enter them. I repeat the phrase 'She needs what she needs, these are only numbers' again and again in my head, but secretly, there is a little voice that whispers, My God, woman, that's a HECK of a lot of insulin per hour.'

I try not to listen to that little voice.

I enter new basal rates. Large ones for such a little girl.
And I know it's what she needs. And it's just a number.

Here's our current basal rates:

12a - 3a   1.35 U/hr
3a - 6a   .85 U/hr
6a - 6p   .90 U/hr
6p - 8p   1.00 U/hr
8p - 10p  1.05 U/hr
10p - 12a  1.20 U/hr

Does 12a - 3a freak you out? Well it does me.
And I still think it could be tweaked to 1.40 U/hr or even, GASP, 1.45 U/hr.

Insulin Addict.
Damn straight.




Tuesday, July 22, 2014

D Camp - Year 5

It's that time of year again - diabetes camp! And we are in year 5, baby.
You can read about Year One, Year Two, Year Three and Year Four. All of them were grand.

This year's camp moved to a different location. It's all good. Grace had to get used to a new cabin, new counselors, new cabinmates, new dining hall, new well just about everything. But one thing remained - her friends. So, move the camp all around - the friends are what holds you to the place.

It was reuniting with her DBFF (Diabetic Best Friend Forever) the indomitable Lily. Hugging and running and hugging and giggling and laughing and whispering and catching up. Just like they never left each other's side. It is grand to behold, the traditions these two have. They eye roll together, they smile at the same things, they chuckle and get the inside joke together, they snark together.



In all, it's wondrous.

And this year, five years into it, I leave her and I tell her to have a blast. I don't worry that she won't be taken care of, those waters are under the bridge. I know she will have fun. I know she feel a part of a community that I don't belong to. I say goodbye and give her kisses and tell her I will miss her sweet face.



I don't remind her to check her BG.
I don't tell her to text me or call me if she has a problem.
I don't tell her to ask an adult for help if she needs it.
I don't tell her to remember her snack in her bag.
I don't say those things because I don't have to.

It's a relief not to say them. It's a relief to not worry.
But I don't want her to think that's all I do all the time with her, worry. Because I don't. It's just that I never get SIX WHOLE DAYS of it. In a row. And that's different.

She sees it on my face, my intuitive girl. She tells me on the way back to the car, after we have made her bed in her cabin and gotten her squared away, 'Have fun Mom. Sleep.'

I smile, because I will.

Have fun at camp, sweetie.
Sleep, eat, play, swim, zipline, commune.




Tuesday, July 15, 2014

Happy 12th Grace!

Twelve years old. And you know that all I can think of is back to when she was diagnosed at age 6. When I sat there in the hospital room, wishing her to be better and to be well, I thought of this day, when she would turn 12.

I thought, 'When she's 12, she will have had diabetes for half her life.'
Half her life.

That's where we sit right now, splitting the hair between the time she hasn't had diabetes and the time she has. And it turns. And it won't turn back. She will never in her life have less time having diabetes than she is alive. Maybe it shouldn't bother me so. Maybe it's just a milestone I need to work through. Maybe it means something. Maybe it's all just a wash.

It is her birthday, the day we celebrate her very being. 12. On the cusp of being a teen. Taller. Smarter. Glass-ier. More thoughtful. More able. Independent.

She is all of those things and more. She's OK with her diabetes. She hates her diabetes. She thinks it's lucky she has it, because if she wouldn't have had it, how would she have ever met Lily? She thinks it's the worst thing in the world, and curses the very day she was diagnosed. Yeah, she's 12.

She's awesome. She rocks. She's got a sense of humor that will bring you to your knees. (Good girl, it will carry you far, being able to laugh at yourself, your situation and what happens around you.) She loves books and bikes, dances and swimming, hairstyles, makeup and glitter.

She is the glitter, I want to tell her.

Happy 12th Birthday, Grace.
Rock on.







Sunday, May 25, 2014

FaceTime

I drive her to Rehobeth Beach for an invited all-girls Memorial Day weekend at her friend's beach house. It's her and two other girls from school. She's been looking forward to it for weeks. She has a sleepover the night before, and the next day, I drive her two hours to get there. The girls she's with for the weekend meet her in the development on a golf cart, waiting for her in their bathing suits. I see her smile broaden when she sees them. She's just like me at her age, wanting freedom, with her friends. My eyes tear up as I drop her off. It's good though.

She's packed everything she needs, changed her Pod, and has extra everything. We throw in the ketone meter 'just in case' as she says. I don't know how lucky we will be that we have, until later.

She jumps out of the car when we arrive, leaving behind her D kit that has her extra supplies and snacks in it, and her coat. We retrieve them later and laugh about it. My girl, so anxious to get on with it all. She dumps her stuff and quickly enters the bathroom to change into her bathing suit. The pool is open in the development - the first day of it - and they are all eager to christen it. She enters back into the bedroom and I quickly follow, asking for a real BG - a testing one, not the Dex one. She tests and is 81. I talk about how that's a little low to go swimming with, and she should eat a granola bar she has. She scarfs one down, nodding.

I give her a kiss and a hug. The girls all drive the golf cart, with Dad on it now too, and lead me out to the road. I roll down the window and tell her to throw a decreased temp basal in there for swimming. She semi rolls her eyes, but then she smiles. She knows I cannot help it.

I check in with her after swimming, as they are headed to the rides at the beach. She send me a picture of going into the Haunted Mansion. She looks good, smiling and excited.

Later on that night and early morning, the shit hits the fan. Hard.

It's bedtime, about 11 PM. The following texts happen:

Text me night time BG. Tell me Dex.
I'm 312. That's WEIRD. I dosed 3.5u.
OK honey put in +40% for 1.5 hours. Tell me arrow on Dex.
Straight east.
Recheck in half hour. Text you then.

What's Dex say?
331. Dosed 1.00 Dex east 315.
OK. Try and get some sleep. Please get some water. Text or call if you need me.

She sleeps for about 4 hours. Then I get a text at 5:30 AM:

My stomach feels even worse than it did last night. I feel like I have to throw up.
Hi honey. What's your BG?
Hold on I'll test...... I'm 439 ugh I feel horrible. Should I dose 5.65u?

I need you to give yourself 2u via syringe. Get it out. Go to the bathroom.
OK. 
Do you want to go somewhere and FaceTime me?
Yes.

We FaceTime and Grace is in the bathroom, crying. Big, sloppy wet tears of pain. Her stomach is hurting her. She says it feels like torture. The others in the house are not up yet and it's just her, me and her Dad. I go downstairs to the living room as to not wake her sisters. I make her look at me in the FaceTime picture and I tell her what she has to do. She has to listen to me and do it now.

You are to get the needle out and find the two small lines on it and you give yourself 2 units, right now, do you hear me? You will feel better when you give your body insulin. After that, I want you to feel your pump. Does it feel like the cannula is in?

She gets the needle out. She measures 2u. She injects it, in her arm.

Mom, the cannula is out, I haven't been getting insulin. Look.

And I see the error. The cannula is not in. And I know the plan now.

You are to get that Pod off. Disable it and get it off, but not until we get a new Pod on you. So, get a new Pod out and start filling it and priming it. Where do you want it - on your tummy?

Mom, there's no SkinTac in the kit.

Crap. Just use the SkinPrep, you will be fine.

Grace primes the pump and I hear it click. She puts the SkinPrep on and plops the Pod into place. I always give it a 'love tap' for good luck. I do that through FaceTime, lifting my hand and patting the screen. It's the only time Grace smiles. She knows our routine. I won't give it up. The Pod thumps into place.

Now put in +70% for one hour temp basal. And dose yourself 5.00 units.

Grace doesn't hesitate, and through tears, puts the numbers in and presses 'confirm.'

What faith my child must have in me, to dose that amount over a FaceTime call, knowing it would be what she needs. I'm fearless and scared to death all at the same time, but all she sees is fearless.

Now we are gonna check ketones honey. Get your kit from your bag.

She does and puts the strip in and waits for the countdown. 1.6 ketones. I try not to look scared, but the highest ketones she has ever read in 5 years of having diabetes has been 1.1. She knows it too, because she starts to weep. She tells me again and again she thinks she will throw up and her stomach hurts like someone is stabbing her.

I 'shhhhhhh' and I smile and I tell her to lay down with me on the bathroom floor. I tell her to look at me, I have it all under control, I will get her down, it will all be OK, we have a plan and we are executing it. We know what to do.

And I think -  how fast can I drive to the beach? If I send an ambulance, where would they take her? Who should I call to help me? And I think too that I've got to help myself. We will wait for it to come down. We will stay on the line and look at each other and give it it's time to work. Work, damn it. Work. Now. Faster. Men on the moon in the 1960's and I have to wait 15-20-25 minutes for insulin to start working in the body? Damn it.

She moves to the living room and the couch and no one is up yet. I ask her to wake the Dad, but she says no. Even in pain, my independent soul of a daughter doesn't want to ask for help. That's a blessing and a curse.

We go through the next two hours on FaceTime, checking, rechecking, ketone-ing, drinking water, raiding the cabinets for crackers to make her tummy feel better. And we lay together and she cries. I do not. I don't think I can start and then stop, and then where would we be.

The BG starts to drop, but by 10-15 points at a time. I ask her what she would like to do - stay there or come home? She thinks about it and my earnest little girl, the one without a dishonest bone in her body, who tells me the truth about her life again and again, tells me she wants to come home. It's been two hours, almost three, of agony. She is hurting from head to toe. She knows what she is made of. And she knows when to call it a day.

In five minutes upon hearing it, my husband is dressed and out the door to go pick her up. I will stay at home on FaceTime with her until she feels it's OK to go, and then she will wait for him to come. We lay down and we talk, we start to smile, we hold our hands up to the screen together.

In five hours, she is back home. I hug her when she comes, saying how much I missed her, saying it was good to see her this morning on FaceTime. I ask about her tummy, her head, her BG. She looks up at me.

I'm glad I came home.

Me too, sweetie, me too.