Once Upon a Time Contest – Have you entered?

Time is running out! November 30th is the last day to enter the Once Upon a Time Contest!

Lilly Diabetes, Disney Online and Disney Publishing have collaborated to bring you a chance to win a trip to the 2012 Children With Diabetes Friends for Life Conference.

For the official rules and how to enter click here.

Good luck!

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Our new friend (for life), Mason | #ffl11

The Friends for Life conference was a definite success for us. This household gives it five thumbs up. Of my three children, two think it was equally fun as going to the theme parks. One thinks it was even better (and yes, you can probably guess which one that is).

Dave is behind the camera but there are plenty of versions with him in front of it.

One of the highlights of the week was D-Coaster Day (thank you Martin for coordinating!) It was so awesome to meet so many more tweet-peeps in person. Have I mentioned yet how tall Scott is and that he is indeed as incredibly good-looking as he claims? I have a hunch that with my sunglasses and pig-tails, I was a little unrecognizable at first and they just thought I was some strange lunatic running up and hugging them.

Now backing up a minute to the trip to the park: the bus was PACKED! Dave and I got split up amongst the many people squeezed on board. I chatted with the person next to me oblivious to those that boarded after us, and a little distracted by the Blunt Lancet t-shirts I saw on some of the people who were left at the bus stop because it had filled up (see shirts in above picture).

Dave tweets to me:

We had already noticed each other and were chatting it up – as much as anyone can chat it up when you have so many people packed between you. Michelle told me that Mason and husband, Matt, were on board too, though I couldn’t see them from where I sat.

We disembarked and got separated but were reunited at the Walt Disney statue with the other D-Coaster peeps. This is where Caleb and Mason met.

Caleb and Mason meet

Why I did not have the forethought to capture this moment on film in any way, I’ll never know. It was priceless. They shook hands and then showed each other their Pods and flashed each other their DexCom-filled SpiBelts as if it was part of a well thought out fraternity greeting. It was more like they were seeing each other again after several months than meeting for the first time. I could see how comfortable Caleb was when he is usually more self-conscious. It was heart warming.

Mason is full of life and does not seem the slightest bit self-conscious about anything. I dare anyone to not smile in this young man’s presence. His connection with all three of my kids was instant – the definition of fast friends.

Fast Friends

When the conference officially started and the kids were broken into groups, Mason and Lila landed in the same set of eight. I soon started to joke that they would one day be attending prom together. I couldn’t help think of the real life story of friends that had been made years earlier at FFL who did in fact become prom dates.

The days that followed were so jam-packed and fast-paced, that I found it hard to carve out time just to hang out with folks. Luckily our paths with the Golladays crossed several more times. I’m so glad we had the time that we did. As has been stated countless times before, the DOC people we meet online are as awesome if not more so in person. The Golladays are no exception.

We didn’t get a chance to officially say good-bye due to a very early departure flight. We’re hoping for a Skype session soon with our new IRL friends for life.

Meeting Team Type 1 Co-Founders | #ffl11

My trio with Team Type 1 Co-Founders Joe Eldridge and Phil Southerland

Phil Southerland was THE first type 1 athlete that I encountered after Caleb’s diagnosis. It started with a video, then a  magazine article  and then I scoured the internet looking for any information I could find on him.

I have always been and continue to be in awe of athletes with diabetes. I have the greatest admiration and respect for their commitment, discipline and achievement. What they do is the equivalent of magic to me.

The week before FFL, Colin completed a week of triathlete camp with Cliff Scherb. It was hard to know which one of the five of us was most excited to meet the co-founders of Team Type 1. It was definitely at the top of all our lists.

On the first day of the conference, we attended a Team Type 1 focus group and got to listen to three team members, including Joe Eldridge, talk about their experiences. I’ve read his story so many times – about the wager between him and Phil of whomever had the higher blood sugar at the end of a race would have to buy the other dinner, and how Joe ended up buying a lot of burritos. Hearing how that motivated him to keep tighter control of his blood sugars live and in person was just as inspiring as the first time I read it.

Then we got to speak to them up close and personal. It was like talking with friends. They are such real and genuine young men. So kind, so sincere. I had brought my copy of Not Dead Yet on the trip thinking I might have some spare time to read. Well that didn’t happen, but I’m so glad I brought it because Phil so graciously signed it for Caleb. A definite highlight for us all.

I was happy to have the chance to thank them for the impact they have had on us.  It is because of them – Phil and Joe, the first type 1 athletes that I came across – that I have never wondered about Caleb’s ability to achieve athletically. Their impact is so strong, that I’ve almost taken it for granted. It’s completely natural to me to expect that Caleb can do any sport he wants to. They, and so many after them, have shown all of us that there are no limits to what someone can attain, including someone living with type 1 diabetes. I have always known this for a fact.

Because of them.

More importantly, Caleb knows this. He never, ever considers whether diabetes will impact his ability to play or complete. He knows that he can do whatever he chooses. He knows he needs to care for his diabetes which means he needs to do things his teammates do not, but having it hold him back from doing what he enjoys is never something that enters his mind.

These are the only publications that rest on the cocktail table of my living room.

Team Type 1 has been and will always be a part of our lives. We’ve met so many great role models. They are examples for Caleb, as a type 1 diabetic, and Colin, as an aspiring triathlete. Thank you Phil and Joe and Cliff and Bradford for reaching out and sharing yourselves so openly with us.

Not only are these guys all amazing athletes, they are truly amazing people. I am so very honored and privileged to have had the chance to meet them. We all are.

If you haven’t seen the video, One Shot, the documentary of Phil and Joe and the team and their quest to get the first type 1 diabetic into the Tour de France, I strongly encourage you to.

When they are in the tour, we will definitely be watching and rooting for Team Type 1.

Colin's autographed poster that we managed to get home in tact.

Caleb, a part of the CURE | #ffl11

Caleb was very excited to find his face in the CURE at the Diabetes Research Institute booth during the Friends for Life Conference. When someone found their picture in the banner, they were given a sticker claiming those bragging rights. Caleb wore his with great pride. He is in the lower right of the U – immediately to the right of the blue ribbon in the picture above.

Back to real life this week, Caleb chose to wear his Friends for Life shirt and was saddened to realize that the sticker got lost in the wash. Sorry, buddy. I was on a mission to turn the laundry around quickly when we got home.

Lila apparently heard Caleb’s disappointment and went to work without any of us knowing. Shortly thereafter, she presented Caleb with a replacement which he wore just as proudly.

You can see everyone who is a part of the CURE at the DRI site here.

DCamp Part 6 | The People

I’ve had difficulty organizing my thoughts for this post, the last in my DCamp series. I don’t think I can properly articulate the power the people of DCamp have. They are nothing short of magical.

All the people who work at the Clara Barton Center and Camp Joslin are special. They LOVE being there and it shows. Many of them attended DCamp as children. Some don’t live with diabetes themselves. But all, adults and teens alike, are of a very high caliber – they know how to have fun, but they also know when to be serious. They are an impressive crew.

I’ve chosen to focus on one counselor, however. I’ll call him Mr. D (only because his name starts with D).

I didn’t notice him at first. He wasn’t a counselor in our cabin and I don’t think we ever came in direct contact with him, but he’s one of the first people that pop into my mind when I think of DCamp.

He is vivacious.

He is passionate.

He is responsible.

He is caring.

In him, I see Caleb. I think that’s why he made such an impression on me. He wore a bandana on his head with a bow tied on the top. He was often the loudest singer. I have memories of him running around the dining hall during meals, inspiring smiles and excitement.

This is the Caleb that I know. He doesn’t show this side of himself to those outside his family. But it’s the boy that lives in my home. The vivacious, life of the party, at times pushing-the-envelope-inappropriate Caleb. You can’t help but laugh at him and with him (even when you know you shouldn’t).

It made me teary, and oddly proud to think that Caleb could some day be doing great things like these counselors do.

But there’s more to it than that.

I won’t forget the days-old tattoo that read “Camp Joslin Forever” on Mr. D’s arm. Remember? I said he was passionate.

And I will definitely not forget the story that Mr. D shared with us. One night, some of the counselors living with diabetes held a session for parents only. I think they knew very well the impact they would have on us. They knew we would soak up their words like sponges. They made themselves available selflessly, for our, and thereby our children’s, benefit.

Mr. D spoke about always being the person primarily responsible for his diabetes. I think he said he was diagnosed in his pre-teens. His parents had left his care almost entirely up to him. He doesn’t fault them for that, nor did he present it in any way other than they thought they were doing what was best for him.

It’s a difficult balance – to allow your child age appropriate responsibility without giving them too much.

Mr. D explained that although he was in charge of his diabetes, he wasn’t taking care of it. He was letting himself hover in the 300s without concern. His parents didn’t know.

Then he told us about a serious seizure he had at a friend’s house during a sleepover. He described it as his wake-up call. After that, with the help and guidance of his friends at Camp Joslin, he started managing his diabetes well. He spoke about how much better he felt. That he didn’t even realize he had been feeling badly before because he didn’t know what it felt like to feel good. He proudly announced the A1C results he has maintained since that pivotal event. We were proud right along with him.

He wished that his parents had been more involved.

On this point the panel was unanimous:

They want to be in charge of their diabetes, but they don’t want to be alone. They want to know their parents care, but they don’t want to be judged or lectured. They want their diabetes to be theirs, but they want input and gentle guidance when they need it.

I think they called it “supervised autonomy”. Let diabetes be theirs, but don’t leave them alone to manage it all by themselves.

It’s hard to explain and possibly harder to execute.

They spoke about having weekly or daily meetings to review things. Parents and teen/young adult collaborating; providing time together to allow for discussion and troubleshooting.

Without judgment or consequences.

I had heard this before. My friend, Melinda, shared a similar story with me. This is how she worked things with her son, Michael. Melinda and Michael are an inspiration and I think of their example often. In fact, Melinda is the reason we went to family camp in the first place. Her high praise made it a “must do” experience.

I am so thankful to the people who make DCamp what it is. The facilities, activities and songs are great, but at the end of the day it’s the people that matter. If a permanent 6” by 8” tattoo on a young man’s upper arm doesn’t portray the impact that DCamp has on people living with diabetes, what does?

You can read the rest of my DCamp series posts here.

DCamp Part 5 | The Highlight – Video

Spider Monkey Colin

The zip line.

Colin and I both did it. Colin went first. In true spider monkey fashion, he climbed that tree lickety split. Then with a huge smile on his face and without hesitation he zipped.

I followed. All I could think as I climbed that tree was that if Colin could do this, then I had to do it. I couldn’t imagine how Colin did it though. The staples in the tree were so far apart that I, with my 33 inch inseam legs, genuinely struggled. It was also a heck of a lot more exhausting than I expected. Colin made it look easy. I found it a challenge. Not a terrible challenge, but compared to what I saw Colin do, I was surprised I wasn’t able to fly up the tree similarly.

We came back later in the day with Caleb, but because of weather (I think that’s the reason) they changed it to walking across a wire from tree to tree. Caleb was a little disappointed and maybe even a little unsettled at the last-minute switcheroo, but he was still willing.

I should mention that this event is typically reserved for kids older than Colin, but they make an exception for family camp.

After doing it myself, I was worried for Caleb. His legs are even shorter than Colin’s and I didn’t know how he was going to handle this. I worried that he would get frustrated and give up. I wouldn’t blame him either. He has never done anything even remotely close to this before.

Even when given the chance to quit early, and even after saying he was done, he kept going. He did the whole thing. This was SO much harder than the zip line. All you needed to do for that was shimmy your bum off the board after you climbed to the platform. Once you’re up there, it’s the simplest way down, so it’s really pretty easy. What Caleb did took much more determination and perseverance.

There are many things that my children do that make me proud. This one will forever hold a special place in my heart. I know how hard it was and it would have been so easy for Caleb to say it was just too much and to back out at any point. But he didn’t. It’s not only to his credit, but also the supportive, patient camp counselors and all the other campers rooting him on.

Hands down, this was the highlight of the trip for me. I think it’s pretty high up there for Caleb too.

Related posts:

DCamp Part 1 | The Trip That Almost Wasn’t

DCamp Part 2 | Opening Day of Family Camp

DCamp Part 3 | Diabetes Camp Family Style

DCamp Part 4 | Photo Montage

Up next, the final DCamp installment – The People that Make DCamp What It Is

DCamp Part 4 | Photo Montage – The Barton Center

 

Post banana-sling in the Banana Olympics (paramedics to heal the banana wounds)
Prepping for special Banana Olympics version of Gah-Gah
Spontaneous after hours dance in the dining hall
Prepping for the parent pageant - Dave in a dress!
Much more manly - crossing over easily on the first try (me - not so much)
Taking a very rare rest
Inside the boys' dining hall - Camp Joslin
More archery
Making fortune tellers - my kids can do this for hours!
Working on fortune tellers at Rainbow Ridge
Arts and crafts
Holding hands with new friend
No hands lunch
Pickle!
So, so tired - dressed up for the dance, but didn't really make it for long
Walking to the dining hall after BGMs and insulins ("99" was Caleb's number choice and is a #bgnow reference)
Braiding hair waiting for the dining hall bell to ring
Gathering for last day ceremonies
Saying good-byes
Teaser for the Highlight video coming next week...

Related posts:

DCamp Part 1 | The Trip That Almost Wasn’t

DCamp Part 2 | Opening Day of Family Camp

DCamp Part 3 | Diabetes Camp Family Style

Up next – The Absolute Highlight of DCamp Video and The People that Make DCamp What It Is

DCamp Part 3 | Diabetes Camp Family Style

This really just sums it all up

I have yet to write fully about our trip to the Clara Barton Center last August because I know I cannot do it justice. Despite my dislike of the concept of camping, I would not hesitate to go again. But for the fact that we are going to the Friends for Life Conference in July, we would be headed back this August. I foresee a trip in 2012.

We have wonderful memories of our time there. As I look back at everything we did, it’s hard to believe it was only four days long.

It started with the initial ice-breaker where we played Duck, Duck Barton and sang “one and twenty, two and twenty, three and four and five and six and twenty…”

We learned lots of fun camp songs like Go Bananas, The Donut Song, Yogi Yogi Bear and I Want to Be Friendly. We continue to sing them even seven months later.

First night campfire (note the backpack of D supplies on the counselor next to Colin)

We played lots of crazy camp games like Tails, Toilet Tag and the ever blood glucose reducing activity of Gah-Gah – as effective as any insulin on the market, with a faster onset. Colin absolutely loved playing Tails because speed was everything in this game and that boy is fast. Colin and Caleb brought the game of Gah-Gah home with them. We now have a volleyball renamed the Gah-Gah ball. If you’re wondering, you play in a spacious, enclosed area (typically blocked by turned over benches) and can only hit the ball with your hands. You try to get the other players out by hitting their legs or feet with the ball. So simple, right? I’m not kidding about its effect on blood sugar. It’s right up there with swimming.

The dining hall experience may have created my fondest memories. It’s not a quiet place. You dine among an almost constant stream of camp chants. Meals were themed – Pig Tail Lunch, Sunglasses/Hat Dinner, Be a Winner – Rhyme at Dinner, Singing Breakfast (although I can’t recall a meal that did not involve singing) and No Hands Lunch. “Bum-Bum-Bah-Dah” is by far my favorite table-slapping, dining hall song.

I simply can no longer compliment my kids with a “Good job”, without completing it with the quick-paced mantra of “good-job, good-job, good, good, good – HUH!”. Not possible.

It was a little unsettling in the beginning. It’s an immersion into a world of silly. But we all acclimated, got our bearings and joined in.

Underlying all the silliness is well-planned structure.

Caleb's Second Favorite Activity at Camp

There are scheduled blood sugar checks otherwise known as “BGMs and insulins” often done back in the cabin while preparing for meals. Chores are shared and everyone pitches in. There is a protocol for dealing with blood sugars outside of the scheduled “BGMs”. Each counselor has a backpack at all times which contains meters, lancets and fast acting carbs. Nightly protocols include multiple bg checks until it is deemed okay to reduce it to the mandatory once a night. Each cabin is connected to home base via a speaker/walkie talkie system and there are nightly check-ins and codes for potential emergencies.

The staff are almost exclusively teens to young adults. I was very impressed by the caliber of each and every one of them. They knew how to have fun and also knew when to be serious.

There is a daily, ceremonial flag raising, one of many camp-style graces before each meal and, of course, a jam-packed schedule of activities. It’s impossible to get bored.

At Camp Joslin (the brother camp to CBC) enjoying the lake

We had a campfire, went canoeing, swam, hiked, visited a horse farm, did archery, partook in a taste-testing of unique foods, played baseball and did arts and crafts. There was a comedic parent pageant where the parents got dressed up with props chosen by the kids and performed their varied talents. On the final night, the kids had a barbecue while the parents were treated to a candlelight dinner in the dining hall. We were reunited afterward at a rockin’ dance party.

There were also informational sessions for the parents like: Nutrition, Taking Time for You, and Living Socially with Diabetes  During one of these breakout sessions, the non-D sibs came together to look at, try on (without insertion) and talk about diabetes tools like meters and pumps. The D kids met separately and wrote “Dear Diabetes” letters. Caleb told diabetes he wanted to take a magic pill and be cured of it.

It was the first camp experience for my children and they all LOVED it. A five star hotel has nothing on Camp Barton. Although I look forward to our next trip to the Clara Barton Center, that hotel room in Boston where we extended our trip was a happy site for this momma after 4 days of cabin life.

Up next – DCamp Photo Montage, The Absolute Highlight of DCamp Video and The People that Make DCamp What It Is.

Related posts:

DCamp Part 1 | The Trip That Almost Wasn’t

DCamp Part 2 | Opening Day of Family Camp

Broken DexCom Wire

DexCom
Broken DexCom Wire

Sensor error.

Restart.

Good numbers.

Return to top and repeat a few times.

Recurrent sensor errors.

Pull the sensor.

I think it was day six so my attitude about this oddly performing sensor was, “oh well”.

After I took it off I was examining Caleb’s skin and was rather in awe of the fact that it was looking really good. I brushed my fingers over the smoothness and felt a bump. It was the wire to the sensor. It had broken off not at the tip, but at the base so I was able to pull it out easily. I could see that the little silver end was intact and was confident that I had removed it completely.

I reported it DexCom. They took all the pertinent details, asked for a download of the receiver data and sent a prepaid package so I could return it.

DexCom
Sensor Wire Intact

I have since pulled another sensor from Caleb and verified that the length of the one that broke off was intact by comparing the wires.

I share this so that if you see a similar instance of ??? and/or sensor errors, you consider making sure the wire is removed completely, and if you suspect otherwise, seek medical assistance. I will likely examine every wire I remove from Caleb henceforth just to be sure.

Further to this end, I asked a couple of friends who I knew had similar issues to share their stories.

From Elizabeth Arnold (by the way, congratulations on your book!):

Yes, it happened to me a couple of times…Both times I was wearing the sensor in my arm, I inserted and got failed sensor warnings, and when I pulled the sensor out I could see the wire wasn’t attached. I called Dexcom and they told me the wire would eventually work its way out, but so far (this was months ago) both wires are still in my arm. I’m assuming now that they’re not going anywhere…

There were no infections and it didn’t cause me any pain, but I’d heard reports that a few people actually needed surgery to remove the wires (I guess because of infection.) The one thing that bothers me is that when the discussion with the FDA took place, I believe Dexcom claimed it had only happened rarely (I think under 20 occurrences), and I can guarantee that if it happened to me twice (both times I reported to them) it’s actually much more common than they’re stating. I assume it’s not all that dangerous or the FDA would be making a bigger deal out of it, but I don’t like the idea of there being wires permanently lodged in my arm!

From Laura Houston:

Due to lack of real estate on Nate’s 2-year old body I thought I would try putting Nate’s OmniPod and DexCom sensor on his tummy.  We normally use Nate’s tush for his pod and rotate the DexCom sensor back and forth between his arms.  After I placed the sensor on his tummy I waited the 2 hours and put in the 2 bg checks and immediately received a sensor error, it was late, I was tired, I restarted the sensor.  Two hours later, I repeated the process this time with success but the next day I just kept getting ‘off’ numbers and a lot of ???.  I won’t lie I didn’t want to lose the sensor so I restarted once again only to repeat the entire scenario.  I finally called Dexcom to report the problem, I uploaded the information and sent it to them for review and they told me to pull the sensor.  I waited until Nate’s bath time to remove the sensor from his stomach and when I pulled it off there was no wire attached to the transmitter.  I immediately called DexCom to report the problem and ask for some advice on how to handle the situation. I was completely blown-off by the CS representative and told that I must not have seen the wire fall out.  I would have thought that too if it had not been for the hard, red knot where the sensor had been.  I took Nate in to the doctor (for his regularly scheduled appointment) about a month later and it seems that the sensor is still in place but there in no sign of infection and we are hoping it just makes its way out on its own.  Fingers crossed.

If you have had a similar experience, you are welcome to share it here.

Relating to Purplicious | by Caleb

Purplicious OmniPod DiabetesWe are fans of the Pinkalicious series of books. Pinkalicious is fancy and loves pink, her parents are fun but they’re not shy about enforcing the rules, and Pinkalicious learns a valuable lesson about eating healthy, green foods. What’s not to love?

For Christmas, we chose to share the pink fun with my niece and the kids’ younger cousin by giving her the first three books in the series: Pinkalicious, Purplicious and Goldilicious. Since there were three books and I have three kids, I asked them each to make an inscription in one of the books to make the gift a little more special.

Lila picked Goldilicious because she likes “unackorns”.

Colin’s summary of Pinkalicious addressed the perils of eating too many cupcakes because he’s all about making good food choices.

Caleb’s initial note summarized a very important, yet succinct message from Purplicious:

This story will teach you that you don’t have to agree with other people. Just be yourself. Love, Caleb.

An excellent point, indeed. Nevertheless, I asked Caleb to personalize it so that it would mean more to his cousin. He met my challenge with this:

P.S. So far in each grade I’ve had to teach people about diabetes. In the story “Purplicious”, Pinklicious is the only one who likes pink. Pinklicious feels like she is being teased. I feel the same way when I’m in front of people and they stare at me. At the end of “Purplicious” Pinkilicious feels better because she meets a girl who likes pink because it makes purple. I feel better because I get used to it and tell them what it is.

So M, if you ever feel like you’re being teased just know that you can stick up for yourself. It doesn’t matter what other people think. Caleb.

No matter how much I try to normalize his environment, and despite the best efforts of the caring people who surround him, this feeling of being different remains.

As heart-wrenching as it is to read his words, I take comfort in the wisdom that he has gained, and his willingness to share it with those he loves.

Omnipod dexcom
Caleb with his cousin, M