CWD - Grace and the Children's Group

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We attended CWD in Philly this past weekend. While I attended the major sessions on Saturday, Grace went to the children's group. She was in the the ages 6-9 group. It didn't sit well with her at first, because she really wanted to be with the tweens, the 10-13 group. It was what it was and it worked out. I do wish there had been more education for her within her 6-9 age group. They had fun all day Saturday - they exercised, they had icebreakers, they swam as a group and they had a scavenger hunt. I wish there had been some carb counting in there, some discussions about lows and how to treat, but that was saved for the older groups. I understand that a one day conference can't be everything, I just wish it had a smidge more education for the younger set of kids.

No matter, Grace had a blast while she was there. She mingled and conversed and met other Type 1 kiddos. She managed her BGs on her own. And the staff at CWD informed me about what they did and how they treated her BGs, through the little card they inserted into the back of her nametag around her neck. And here it is:

I loved the simplicity of it. I loved that it was right there, on her, for me to see. Grace insisted on saving her little card and her green wristband from CWD. She calls them her 'memories.' 

We would meet up for snack time, and lunch and our breaks. And she would run towards me and begin to chat about what they just did together. I kept asking Grace if she liked her day in Saturday, away from me, with kids just like her. And she would reply each time that it was great to be with others who were diabetic, that she didn't feel like she was the ONLY diabetic around, that it was good to be with others who wore devices, who beeped and clicked and popped glucose tabs. And really, who could ask for more?

Except for time away from the paparazzi, who apparently would not leave the girl alone!

CWD Conference

It was fantastic, that's all I can say. The lectures, the learning, the camaraderie, the communion. Yes, the Children with Diabetes Technology Conference that Grace and I attended this past weekend was all that. Part of the whole experience is being among so many people and children with Type 1. It does something to a person, to feel not alone in dealing with this disease. It reaffirms the courage that it takes to live every day, and seeing all my fellow friends with Type 1 as adults, does a heart good. There goes my Grace, as an adult, attending CWD on her own, as an adult. I see it in my mind.

I heard from so many good, good people. Dr. Henry Anhalt, the Chief Medical Officer and Medical Director of the Artificial Pancreas Program for Animas Corporation was there. And he was honest, and funny and was devoted to this project. And it made my heart swell listening to explain how this works, and why and what it might look like. And hearing that the AP results in fewer hypos, particularly those leading to hospitalizations or death and it improves glycemic control without compromising safety. And no, there is no year he projects it will actually be done, or be available for us, but darn it, it's a lot closer than the elusive cure we all hope for. One of the great quotes he stated was from Dr. Eliot Joslin -

The diabetic who knows the most, lives the longest.

And darn it if I'm not gonna be the mom who knows the most, who passes it along, who furthers my daughter's knowledge, cause we are gonna be here a long, long time. You can bet on that. 

And as I sat there, I thought, 'We are talking about an artificial organ for my child! For all the PWDs who sit next to me. For all the Type 1s.' This is what hope looks like. And I think how far we have come in diabetes care, which was exhibited by this slide from Dr. Anhalt.

It's amazing how far insulin pumps have come!
And I am thrilled Grace doesn't have a backpack insulin pump!

Rick Philbin, who worked for Animas for a long time, is Type 1, is on the Board of the Diabetes, Exercise and Sports Association (DESA) was like a god when it came to explaining exercise with Type 1. Rick, could you come home with me and help? Thanks. He was telling me what I needed to do! I loved it, and took notes like a madwoman.  

Look at the physical activity adjustments! I figured dance is close to gymnastics, and Grace weighs about 75 lbs, so we split the difference between 50 lbs and 100 lbs. Do you hear the angels singing? I do! he told me how much grams of carb to snack on to prevent lows. Holla to Rick!

And might I add, he knows about meal bolus adjustments too! I took pictures as I was so excited, I couldn't even take notes. There are meal bolus adjustments I can make for low, moderate and high intensity cardio (can you say when Grace dances like she got shot out of a cannon???) I adore this. I adore information that can help Grace do what she likes to do, and not go low. THIS is what makes CWD and the presenters absolutely rock.

And of course, Gary Scheiner presented about preventing hypoglycemia. He gave Grace a giant hug when he saw her and proclaimed that she grew a couple inches, which she has. He gave wonderful information about preventing a rebound high from a low and stated that the goal should be less than 10% of BG readings below target at each time of the day. He constantly stated that we should be looking for BGs to return to within range 3 to 4 hours after a meal, not 2 hours. And he gave a good list of some uncommon ways to treat lows, with some high glycemic index foods:

dry cereal

pretzels

graham crackers

vanilla wafers

jelly beans

gatorade

And of course, dextrose rules! All the good dextrose candy helps bring up a low - SweetTarts, Smarties, Spree, Airheads, Nerds and Runts. He reminded us all that it's hard not to overtreat and to abide by the 15 minute rule, as hard as it is. That when we see a low BG rising, to let is rise and continue to watch it. That if the BG is rising, then a person should be fine.

Tom Karlya closed the conference on Sunday morning with a great talk to all of us, mothers, fathers, children, PWDs. It was profound, how all it takes to do something big in life, is just one step. Just. One. Step. Whether is starting something like JDRF, DRI, CWD, it all takes one person, with one vision, making just one step. And he had us captured, with humor and insight and belief, that we ALL make a difference in each other's lives, just by being here, in communion with others who are going through the same thing. And he left us with a message that resonated with me.

Amen to that, and Amen to CWD.

Coming up this week, more CWD blog posts - 

Grace and the children's group

Tom Karlya's video that had us crying

Dinner out with the CWD gang

Hanging with Grace's DBFF

All too much for this one post.

      

We are off to CWD!

This weekend is the Children with Diabetes Technology Conference in Conshohocken, PA. That's about 20 minutes from our house and you bet your sweet glucose tab that Grace and I are going!

The program agenda looks to be terrific - with speakers on CGMs and new technology, advanced pumping concepts, managing technology in school, managing diabetes stress and burnout, making sense of sensor data, sports, exercise and BG control, managing hypoglycemia and infusion sets and sensors. Whew!

I really want to go to the advanced pumping course, though it's at the same time as managing technology in school. You may see me scoot out from one to the other! The managing stress and burnout session looks great if it provides me ways to help Grace manage the daily grind of diabetes. And the managing hypoglycemia session is with none other than Gary Scheiner.

The best part of it all is who is coming to the conference, of course! Kelly will be there - and the word on the street is that we are roomies! Kerri will be there, Bennet, Hannah, Scott....yeah! That's as much fun as the conference itself - bonding with my friends from the DOC! Laughter will ensue and that's a great way to deal with stress and burnout!

Let the D games begin!

Sick and Low

Grace has the stomach bug. And so far, we have avoided dehydration and a visit to the hospital. Just for that alone, I should be receiving some sort of medal. She has thrown up only once. It's the other end that's having the problem. And while her body tries to deal with it all, I am trying like heck to keep her blood sugars up and within the lower end of her range.

She spent the entire night last night running to the potty at the end of the bedroom hall. She made it just in time, every time. I want to give her a medal just for that! And you know how it goes, after a while, there just isn't much more to come out. Yeah, it sucked. All of it.

What I know about Grace is that when she is sick like this, and it's only happened once before, she needs a lot less insulin. Like, suspend the insulin. For extended periods of time. And eat, with no insulin coverage. Not that she wants to eat, but whatever she does find appetizing, I don't cover it at all. And it's the one time in life we buy regular soda, as exhibited above. Regular Sprite. She thinks she is in heaven.

And she runs low. Low. Low. Low. Like the 48 you see above you on the lower end of the range that happened today. Yeah, that one required eating a banana and some glucose tabs. Her choosing. Cause when you are low like that, the first thing I ask is 'What would YOU like to eat?' and I let her choose from the list I start reciting:

toast?
banana?
applesauce?
regular soda?
juice?
crackers?
pudding?
glucose tabs? (funny, I list it like it's a food)
sandwich?

And she told me that she doesn't remember the taste of regular soda. I know she had it before her diagnosis. That's what three years of this disease, when you start out at 6 years old, does to a kid. They start not to remember a life before diabetes. While that makes me kind of sad, Grace just said it to me resolutely, without a trace of sadness or remembrance. It just was.

Happy Valentine's Day!

Happy Valentine's Day!

If love is universal, no one can be left out. 

~Deepak Chopra

Enjoy your day. Eat, bolus, have fun!