State Lifeguard Championship

Earlier in the summer, Seth was on a lifeguard team that competed and won the regional lifeguard competition.  The top 3 teams from each region advanced to the state competition. Last Monday was the Texas Amateur Athletic Federation State Lifeguard Championship.  This is the first time a team from Jason's pool has competed in the state competition.  Being the only team from a small town (and a small facility), they were by far the underdogs.  Competition was fierce, with several teams that have been to state before and many that come from year-round facilities with hundreds of guards.  Also, if you remember, this team not only has a member with type 1 diabetes, but also a team captain that had a liver transplant 3 years ago.

Each team had 4 events to complete.  The first event was a spinal scenario.  The guards not only had to respond to a spinal injury (fake, of course) but they also had to address rule violations in and around the pool as well.

The next event was a big pool scenario.  There were several incidents the guards had to respond to: an active drowning, a baby in the pool, an unconscious person, and a "shadow baby."

The final part was actually 2 events: first aid and CPR.  The first aid event was crazy!  There were 3 victims.  The first was a baby (doll) that was unconscious, so it only needed to be monitored until EMS arrived.  Victim 2 had heat exhaustion, a bee sting, a broken ankle, asthma, and a seizure. Victim 3 had a gash on the knee, a bloody nose, diabetes (hypoglycemia), and was spitting out teeth.  It was brutal!

The CPR event was immediately after first aid, in the same location.  The mannequin was lying beside what looked like broken glass, with a giant insect on its chest, and a bottle of bleach and an electric cord on the other side.  All hazards had to be dealt with before CPR could begin.  Intense!

After all teams completed the events, scores were tallied and winners announced.  Seth's team didn't place in the top 3, but they weren't last either! They placed 9th, which was so amazing considering it was their first time.

Diabetes did not play incredibly nice, of course.  Seth woke up over 200, and then there was the breakfast spike.  I'm sure he didn't feel his best, but he never complained and he didn't allow it to affect his performance in the events.  He did a conservative correction, knowing it was probably adrenaline. He still crashed on the way home.  I watched Dex while he napped, and woke him up when he was below 70 with diagonal down.

I am so proud of this team!  They worked hard and did a great job.  Watch out for them next year, Georgetown and The Woodlands!  This team may knock you down in the rankings!

Superman

This post isn't about diabetes, just so you know.

I met you in the summer of 2007. I fed you, and you were mine.  Jason says it was like feeding a stray puppy. 

You were a big brother to my boys, and a little brother to my husband.  I loved our twisted "family tree" and how you called the boys "brophews" and they called you Uncle Bubba.  I know you had lots of "moms" and I'm so proud I was one of them.

You were a role model for all the other guards.  They looked up to you, respected and loved you.

And sometimes you were not such a great role model.

You freaked me out when you wore the sunglasses contacts.  I loved seeing your blue eyes.

I loved your deep voice, deeper than it seemed it should be.  And the way you sang just a little tiny bit off key.

And for some reason you loved putting on tiny clothes from the lost and found.

In most crowds, you were the biggest one there.  I think you cried a little bit when Seth passed you up and you became the runt of my litter.

Cancer came back.  We all got scared.  The surgery got it all, but the chemo after was rough.  I hated taking you the couple of times I did.  Hated watching them put that poison in your body. I couldn't even feed you anything that made you feel better. But we all hoped that poison would kill the cancer before the cancer took you from us.  And it did, for a while.

And we had some more fun times.

Then it came back again. We all thought/hoped you would beat it again.  I never gave up on you and held out for a miracle until the very end.  And at the end, we were there. I hope you felt the love as you took your last breath.

How do I heal the hole in my heart?  I will never be the same again.  But I would do it all over again, even knowing I'd lose you.  I could certainly do without this pain, but I wouldn't have wanted to miss the dance of having you in my life.  I'll love you always, and you'll always be my Superman.

Show Me Your Pump

Most of the time, Seth and Jason don't care about their Dexcom sensor showing.  In the summer, they both work as lifeguards (Jason is a pool manager in the summer) so their sensor is pretty much always showing.  The questions are pretty much nonstop at the pool, people asking what it is.  Neither of them really mind telling people what it is, otherwise they would wear it under their swimsuit somewhere.  But they do sometimes get tired of answering the same question over and over.  Depending on who asks and how, the answer may be humorous. (I always make them answer sincere questions with the real answer.  Buzzkill, I know.)

Enter Miss Idaho Sierra Sandison.  She wore her insulin pump ON STAGE during the SWIMSUIT portion of the competition.  Well, she actually wore it during the entire thing, but the swimsuit competition was the only time it was really visible.  In a place where appearance is pretty much everything, this brave young lady wore a visible medical device.  Wow!  I am just blown away by her bravery.  She also started a hashtag on social media, #showmeyourpump.  It's kinda gone crazy, with people posting pictures not only of their pumps, but also of other medical devices.  She is empowering people!  How cool is that???

Anyway, back to my guys.  Their reach is nowhere near that of Miss Idaho, but I have no doubt they are influencing someone with their openness.  Medical devices of all kinds are not easy to wear, and even less easy to wear in the open.  But these devices are what make a more normal life possible. It takes brave people that aren't afraid to show those devices to make them more visible/acceptable to the public.  Brave public figures like Sierra Sandison, and all the regular people that just wear their devices in everyday life like Jason and Seth.

Closing the Loop

These has been lots of talk recently about the closed-loop (artificial and bionic pancreas) trials.  Many of my awesome friends have asked me about it, posted about it, etc.  It is a very exciting development that I have been following for a while.  I do have some concerns, things that will need to be addressed before it becomes available to all type 1s. 

First, the artificial and bionic pancreas both require 3 sites on the body.  2 pump sites, similar to the one shown in the first picture, and 1 CGM (Dexcom) sensor, like the second picture.

 

Having even one thing attached to the body can be a hassle, much less 3.  The pump sites will both be attached to plastic tubing.  Each one is attached to a separate pump. One pump delivers insulin, the other delivers glucagon. Pump sites can cause scar tissue.  Areas with scar tissue can no longer be used, at least not for a period of time to see if they heal. This is especially a concern for children, who have much less surface area for inserting all these devices. All 3 devices are connected to a smartphone that basically controls the insulin and glucagon delivery.

Another issue is that glucagon is not a stable solution.  At the present time, it must be replaced daily in the glucagon pump.  That would be a huge expense in regular use.  Researchers are working on stable forms of glucagon, so hopefully this issue will be solved soon.

At present, CGM (Dexcom) technology is not advanced enough to make dosing decisions.  We use Dexcom as a tool to view trends, but never inject insulin based on the number Dex gives.  A fingerstick test on a blood glucose meter is needed to confirm.  In closed-loop systems, the number from Dex is used for the system to make the decision.  A more accurate Dexcom is currently being worked on, from what I understand.  Until Dex is reliable enough for dosing insulin it really can't be used outside of clinical trials.

Insurance companies are also putting language into their policies to specifically exclude closed-loop systems.  Without insurance coverage, most people will not be able to afford the systems when they do become available.  Some companies do not cover pumps and CGMs, either. There are still many people that do not have the option to use the current technology, much less what is on the horizon.

One important thing to keep in mind...the closed-loop systems are in trials right now.  They have not been approved yet.  The people that are doing the trials are amazing.  They are volunteering their bodies to advance the technologies that will hopefully improve the lives of all those with type 1 diabetes.  Heros in my book, especially the children that have just recently been approved for these trials. Heros like Elise, who just started the bionic pancreas trial.  At 6, she is the youngest person to trial a closed-loop system.  

Don't misunderstand me. These clinical trials are hugely important. This will be life-changing for people with type 1 diabetes.  We're just not quite as far along as I think the media sometimes implies.  There are still some big obstacles to overcome before we get there. I am so thankful for the people that are working tirelessly to make this happen.  We'll have an even better tool to KDA. Until there's a cure.

Lifeguardians

This weekend was incredible!  Jason's lifeguards competed in the annual lifeguard competition for our area.  He has had teams compete for the last several years, and they always do well.  This year, he had 3 teams competing.  Seth's team name was The Lifeguardians, from the movie The Guardian (starring Kevin Costner and Ashton Kutcher).  The team watched that movie at our house almost every night the week leading up to the competition.  It inspired them, made them reach for greatness.

So, here's how the weekend went:

We left early on Friday morning. 3/4 of the team rode in our car.  One member was in another car.  Jason is all business when he's driving.

I didn't really see the team very much during the day.  I was busy being a first aid victim (I had a broken ankle). Jason and I took a selfie before the games got started.  We got to work in the same event.  He was judge, I was victim.  Day 1 had 4 events: first aid/cpr, fitness, scanning, and The Weakest Link (lifeguard trivia). 

At each event, the team would re-enact a scene from the movie.

Captain: Pop tall!

Team: (clap clap clap) Hoorah!

When they came to the first aid/cpr event where Jason was judging, they added another scene.

Jason: Lifeguardians, will you come find me if I am lost?

Team: Yes, Senior Chief!!

Jason:  Will you come save me if I am drowing?

Team: Yes, Senior Chief!

Jason: I believe you will.

I wish I had taken a picture of the one of the excellent splints on my "broken ankle," but unfortunately, I only took this really sad, how not to splint an ankle.  

After all the teams rotated through the first 3 events, The Weakest Link started.  All 30-something teams did this event at the same time.  After Seth missed a question and got out, he noticed his Dex sensor was coming out.  No problem, I brought a backup.  We planned to put it on when we got back to the hotel.

All the teams from our pool had dinner together that night.  It was just fun team-bonding time.  When we got back to the hotel, I asked Seth about putting on a new sensor.  He decided to wait until after the games were over.  I was a little nervous about that, but because of the nature of the games he wasn't really able to look at his receiver very often anyway.  Deep breath, mom.  It will be fine!  Jason needed the tape replaced on his sensor, but his held up pretty well.

Day 2 started out super early. I was busy again, this time as a rule-breaker in the scenario event. Jason was again a judge for that same event.  Again, when the Lifeguardians finished his event, they re-enacted the scene from the movie:

Jason: Lifeguardians, will you come find me if I am lost?

Team: Yes, Senior Chief!!

Jason:  Will you come save me if I am drowing?

Team: Yes, Senior Chief!

Jason: I believe you will.

And upon leaving each event that day:

Captain: Pop tall!

Team: (clap clap clap) Hoorah!

 No pictures from the early events on Day 2, which were scenario (watching for rule-breakers and injured/unconscious people), spinal (correctly removing a victim from the pool when they have a suspected spinal injury), 3 blind mice (blindfold first aid - one team member talks 3 blindfolded team members through a first aid event), and Crash Bag Clean-Up (not completely sure about the details on this one, but something about putting supplies into a bag correctly using a diagram. Fastest one done correctly won.).  

After those 4 events, the obstacle course began.  Each team member had to complete their task, then tag the next member for their portion.  Person A had to stack chairs then tow person C across the pool.  Person B then had to pick up "trash" on the side of the pool, then take a buoyancy belt to person C.  

Person C then aqua-jogged across the pool....

.....then she got to slide down the really cool slide and tag person D.

Seth was person D. He had to get on a rescue board (backboard) and paddle across the pool.

He was first in and first out!  They won their heat!

After lunch, the awards started.  Medals are awarded for 1st, 2nd, and 3rd place for each event, as well as an overall winner.  The top 3 overall winners advance to the state competition.

The Lifeguardians won 1st place in one event, and 2nd place in 3 events.  When they began to announce the overall winners, I was nervous!  4 medals meant they had a really good chance of placing in top 3.  There's no way to describe the utter joy when they called out "1st place, Lifeguardians!"  Screaming, hugging, tears of joy.  Indescribable and surreal!  The team is headed to state!  Jason has coached teams the last 5 years and has wanted to take a team to state the whole time.  Now he gets to take not just a team, but a team with his son on it!  Besides having a person with type 1 on their team, the team captain had a liver transplant almost 3 years ago.  This team is going to the state competition with a busted pancreas and a borrowed liver!  How incredible is that????  

After they received their award, one final time:

Captain: Pop tall!

Team: (clap clap clap) Hoorah!

Then Jason had to do his bit one last time as well:

Jason: Lifeguardians, will you come find me if I am lost?

Team: Yes, Senior Chief!!

Jason:  Will you come save me if I am drowing?

Team: Yes, Senior Chief!

Jason: I know you will.

The Lifeguardians with their coach

We headed home after the awards.  Only 1/2 of the team was in our car this time.  They were absolutely on cloud 9!  Seth was jingling his medals together and said, "That's what winners sound like."  No, he was not being arrogant.  He was just celebrating!

When we got back to the pool, I had to take a picture of the trophy.  It actually belongs to the city, and will stay at City Hall.  There is also a travelling trophy that the team will get to keep until next year.  The city name and year will go on that trophy.  Hopefully they will be able to get it back next year!

I'm hoping to have another blog post the first part of August telling you how this incredible group of young people won the state competition.  Stay tuned!

 

Sugar Surfing with Dr. Ponder

Last Saturday, we attended a Sugar Surfing seminar with Dr. Ponder.  It was wonderful!  So many things to learn!  I tried to take notes, but there was so much information.  I can't wait for his book to come out so that I'll have the information in front of me at all times.

Big things we learned:

1) Sugar surfing is Dynamic Diabetes Management (DDM).  It isn't a set of rules, it's a way of thinking and  responding to individual situations.
2) Diabetes care MUST be individualized.  One size does NOT fit all.
3) Even non-diabetics do not have a straight-line CGM graph.
4) Start small.  It takes years of practice and patience.
5) Control exists "in the moment."

He explained new vocabulary (flux, drift, nudge, shove, turning a curve, taking the drop) all related to watching your graph and responding appropriately.  You can learn to pre-empt a spike or a drop if you are paying attention.

Micobolusing and microcarbing were 2 techniques he talked about for making small changes based on what the graph is telling you (and of course confirming numbers with a fingerstick before making a correction).

He also talked about finding the balance between alarm fatigue and infomation/BG awareness, in reference to setting high and low alerts on your CGM.  I thought this was important.  Sometimes I think my guys have their high alert set too high, but hearing the high alert stresses them. They have it set to a level where they will take action, not the top of their desired range.  That range can be changed over time as they become better sugar surfers.

After it was over, I asked the guys what they thought.

Seth said, "What he said made a lot of sense.  I do some of those things already."

Jason said, "I'll try it!"

So, I think it was a great way to spend a Saturday morning.  I highly recommend Sugar Surfing, if you have the opportunity to attend!  It's another way to help us KDA!

Isn't this what we wish it could always look like?

Graduation Day #2 - The Real Deal

Last Tuesday was Seth's high school graduation.  It started out a little rough.

It wasn't quite this high (confirmed by finger stick) but still much higher than he typically is in the morning.  It took a huge correction a long time to kick in!  He spent most of the day out of range, but not crazy high.  Excitement?  Nerves? The Twinkie he had the night before?  Who knows?

Nanny (my mom) helped him fix his tie.  She gave him his first bath when he was a newborn and also stayed with him one night in the hospital when he was diagnosed with type 1 diabetes.  She's been there for everything!  She's pretty awesome.

Entering the arena

Getting his diploma

Proud parents and brother

The white stole is for being a Distinguished High School graduate.  The cords are for Destination Imagination.  The medal is his Eagle Scout medal.  3 amazing accomplishments from an amazing kid!  Diabetes may slow him down at times, but it isn't stopping him!  He is fierce and determined.

My 2 type 1s.  I love these goofy guys!

It was an amazing day!  There were a few very special people missing from our celebration, but it was just a great day with those who could make it.  I didn't shed a tear.  For real.  I just kept thinking that we almost lost him on August 24, 2012 and now he is graduating from high school.  What is there to be sad about?  I am proud beyond belief, but not one bit sad.  He is ready for the world.  I hope the world is ready for him!  KDA, kiddo!  KDA!

#SingForNicole

Seth was sick last night.  I was up most of the night making sure his blood sugar stayed in a safe range.  My mind automatically went to this story....

It happened again a little over a week ago...a life cut short by type 1 diabetes.  This time, it was close to home.  Nicole's family lives less than an hour from us. I have no details, other than she died in her sleep.  About 5-6% of all children and young adults with type 1 diabetes die in their sleep.  That sounds pretty rare, and it is.  But it is enough to cause many sleepless nights for d-parents.

Nicole was a huge fan of the band One Direction.  She had tickets to attend their concert this summer.  After she passed, her sister began a campaign on Twitter to ask the band to dedicate a song to Nicole at that concert.  I hope they do.  Nothing good can come of a child dying from this terrible disease.  We can only hope that awareness can be raised.  Awareness of how terrible this disease really is.  Awareness that we desperately need a cure.

I don't want to sound all gloom and doom.  We have a good life.  Seth and I were discussing just a few days ago that for the most part diabetes is just an inconvenience in life.  Some days are rough, like last night.  But most days are just regular days, interrupted only by the nuisance of carb counting, blood testing, and insulin injecting. A cure would relieve us of those inconveniences, as well as rid us of the constant fear lurking in the background.  But until that happens, we will continue to KDA every day.

Graduation Day #1

Seth has graduated from the pediatric endocrinology clinic. His endos (his endo has a fellow, who has been his primary doctor since diagnosis) had nothing but nice things to say about how well he has managed, wished him well for the future, etc.  It was a really nice appointment. Now the search is on for an adult endo.  We have a list, but how do you even begin to choose?

A1c was awesome, and he has gained 8 pounds since last time (yea!).  It could have been from all the Cajun food on his band trip. 

We celebrated the day by eating at his favorite BBQ place before the appointment, then had a few minutes to walk around one of the city parks for. It was a good day.

Long Distance Carb Counting

Have you ever tried to count carbs from a menu without ever seeing the food?  It's hard!!  Seth is on a trip with his high school band, and that's what I've been doing for 3 days.  They have been eating at great restaurants that I have menus for (I was able to find the group menus online), but no nutritional information.  So....I've been guessing portion sizes and estimating carbs for him. I know the menu pictures are hard to read, they just have my scribbles of carb guesses on them.  So far, I think I've done ok.  He'll be home tomorrow night, and I'll be so happy to see him!

Getting ready to leave.
1 bag of clothes/toiletries.  3 bags of diabetes supplies and snacks.

Wifi hotspot?

Seth has convinced some kids at school that his Dexcom transmitter is a mobile hotspot. He even named the hotspot on his phone DexcomG4##### (seriel number). Here's how the conversation went down, paraphrased.

Kid: What's that? (Pointing at transmitter.)
Seth: My mobile hotspot.
Kid: No way!
Seth: (Shows receiver) This is the controller. Search for Wifi on your phone and you'll find it.
Kid: OMG, there it is! Where did you get it??
Seth: My mom got it for me. My dad has one too.

How hilarious is my kid???

He wears his Dex sensor proudly!

DI Competition

A couple of weeks ago, Seth competed in Destination Imagination (DI).  It was his 8th time to compete; he started in 5th grade.  4 of the team members have been together since 6th grade (7 years). They are an amazing group of teenagers!  They are going to do awesome things in our world. 

Here's a glimpse into the world of DI.  The kids do EVERYTHING, including writing the script, designing and making the costumes and props, creating a soundtrack, and performing.  Everything!  There is an adult manager there just so they aren't unsupervised.

Shopping for costume ideas.  Seth got a little bored and started stacking golf pencils.

Final night of practice before the big competition.
Seth loves the tricycle for some reason.
 I think I have a picture of him on it every year.

This year's competition involved choosing a work of art, then centering the entire performance around it.  I had seen the work of art prior to the competition, but didn't know what all was going on with it.  DI is kinda like fight club.  The kids don't talk about it outside of DI.  The only thing I really knew was that Seth needed brown shoes for his costume.

The artwork inspiration for this year's performance.

The kids do ALL of the costume prep.
 If you'll look closely on the back of his arm, you can see a little bump that is his Dexcom sensor.

The  competition consists of 2 parts - a performance and an Instant Challenge.  I don't know much about Instant Challenge (think fight club again), but I know they have a problem to solve in a set time with limited supplies.  This is the hardest part of the competition for Seth's team.  Spectators are not allowed for the IC, but are allowed for the performance.

The performance was fantastic! The appraisers (judges) had awesome things to say about their performance. The engaged and delighted the audience from beginning to end.  There was humor.  The team used their musical talents as part of the performance.  It was just wonderful, beginning to end.

Team picture with their manager after the performance.  They nailed it!

There is a big awards show at the end of the day.  The scores from performance and IC are totaled and medals are given for each category.  Seth's team placed 3rd in their category overall.  BUT, they earned a DaVinci award.  DaVinci awards are given for excellence in their performance.  The appraiser's sheet for the DaVinci award had nothing but great things to say about their performance. This is only the 2nd DaVinci award ever earned by a team from Seth's school.  The first one was earned by this same team 2 years ago!  Like I said, they are an amazing group of kids!

At the awards ceremony with their DaVinci award.

Diabetes did not play into the day much at all.  Other than his Dex sensor showing and having to do an injection in the hall for his lunch, it was not much of a factor.  Seth tamed the D-beast like a boss.  He watched his Dex trend graph and took appropriate actions throughout the day.  I just wanted to share his amazing accomplishment.  With diabetes along the path is a little trickier, but with careful management he has been able to continue doing all of the same activities he did before d. Not only does he do them, he ROCKS them. KDA every day.