Tuesday, August 16, 2011

It's Official...I'm an awful blogger! But here is our CC2011 story.

As most of my readers know, Sydney was chosen to be the delegate from our state for this year's Children's Congress. The hope is that, as a group, we can meet with the lawmakers in Washington and spread the "Promise to Remember Me" Campaign as our legislators vote on important issues regarding the management of Type 1 Diabetes. It was an overwhelming...in a good way...experience for Sydney and myself.  We were able to meet with our law makers and talk about the Artificial Pancreas. This is a device that you will hear more and more about as the next 12 months progress.  JDRF, the Juvenile Diabetes Research Foundation, partnered with Animas--an insulin pump company--and Dex Com--a continuous glucose monitor--to make an artificial pancreas.  One of our biggest focal points for the time we spent in D.C. was to encourage law makers and the FDA to allow out patient testing to happen in the United States with the artificial pancreas. Up til this point, the FDA was dragging it's feet to allow this kind of testing within the U.S.  BUT, this shows you that coming together and working toward a common goal can and does work, the FDA announced at the Senate Hearing on June 22, 2011 that they will draft guidelines for outpatient trials of the AP by the end of the year.  This was great news and resulted in a several minute clap from the delegates and parents in attendance.  This was a huge step in helping us come closer to our goal, a cure for Type 1 Diabetes.

I was recently asked the question if the AP is worth it. We want a cure, not another device that manages but doesn't cure this disease.  I agree, we want a cure. But what I can say is this, a cure is much like climbing a great mountain. You can't get there with giant leaps and bounds but by continuous little steps. I know people often get frustrated when they feel bombarded with non profit organizations asking for donations. Do we even know where that money goes? With JDRF, I can tell you. 85-90% of every dollar goes straight toward research. Research that is improving the lives of kids like Sydney.  Research that has led us to designing this AP.  It's a step in a myriad of steps that will lead us to a cure. A cure that will take away devastating complications.  Curing a disease that is very misunderstood. There is not a cure for Type 1 Diabetes. But, with donations and opportunities like Children's Congress, we can and will find that cure. Our Walk this year will be held on Sept 17. We would love people to sign up and join our team and raise donations on your own, or to help with a donation. Every dollar counts and matters. I will have a blog post up soon showing how you can help our team, Sydney's Soldiers, fight for a cure.

Now, onto pictures!

~Sydney's first plane ride.

~Sydney and the other delegates at the senate hearing. Her numbers were terrible this trip and we had to check her sugars often. I believe this check registered a number in the mid 300s.
 ~Sydney with one of our senators and Gary Hall, a many time gold medal olympic swimmer...and one of the nicest guys on the planet. He also has Type 1 Diabetes.
 ~Sydney with one of her personal American Idols, Crystal Bowersox who has lived with this disease since age 6. The kids had the opportunity to sing with her on capitol hill.
 ~What hotel stay wouldn't be complete without some swimming!
 ~They kept us very busy...we had late nights and early mornings...including one where we missed the alarm and were about an hour late to our meetings. Woops.
 ~The Hill Blitz on Capitol Hill...meeting with our state's congressmen. Syd was a bit unique in the fact that she was the only delegate from our state. So we had to fly solo in these meetings. But she was a champ. She talked of her fears living with Type 1. She was a great delegate to help spread the word about T1 and the artificial pancreas.
 ~Our Representative.
 Our beautiful Capitol Building. I was able to snap this shot while walking to another building for another meeting.
 ~Syd and one of 2 of our state Senators.
 ~The kids singing with Crystal Bowersox on Capitol Hill.
 ~Syd and her friend Charlotte. They were the same age and live across the country from each other but when you share something like Type 1 Diabetes, making friends is easy.  They understand each other. It is neat to see this type of camaraderie occur.
 ~Runner up from Season 9...I think...American Idol's Crystal Bowersox.
~Syd with Charlotte, Avery, and Ashley. 3 sweet girls with Type 1.

 ~This was the coolest picture! It was the profile of a girl that her father made out of used test strips.  Amazing!!
 ~Sydney draining my phones battery playing princess games or angry birds. :)
 ~Diabetes never sleeps. This is Syd, in a deep sleep, holding out a finger for me to check her sugars. The travel and humidity and stress of everything that happened in DC made Sydney's numbers just awful. We only had 2 numbers that were under 200...and those happened to be really low numbers during the night. I had to give her so much insulin during the day to try and bring down her highs that I was up hourly checking her during the nights because I was worried all the insulin would wind up making her sugars crash...which they did. This number was a 42. I corrected it with juice and before I knew it she was up over 2 or 300 again. We even had a 500 during the trip. It was very, very frustrating how the little things still affect sugar levels.
 ~Drinking some juice in her sleep because of her scary 42 during the night. That is why I had to wake up every hour...can you imagine what could have happened if I didn't? It's a fear all T1 parents have and something that I can easily say crosses my mind at least once a day...usually at bed time.
 ~Syd with Crystal Bowersox.
 Syd and this past year's Amazing Race Winner, Nat Strands. She has had T1 since she was 12. She is one of the most sincere, sweetest people I have ever met.
Well, there are some of the pics and highlights from our trip. We had the opportunity to meet several other big name people but I didn't have a photo opportunity. But they include Supreme Court Justice Sonya Sotomayor, Actor Kevin Kline, Brian Kenny, and a pro football player whose name I can't recall. :)  That serves me right for taking so long to get to this blog post.

I did have a fabulous time in DC. It was great to have that one on one time with Sydney.  I feel like I got to know her in a different way. It reminded me why we need to spend quality one on one time with our kids.  And, for those families living with Type 1, I encourage everyone to apply for Children's Congress 2013. It is a once in a lifetime experience that you won't forget. 


wendys said...

What an exciting trip! And what a great advocate for diabetes research you are Shamae. Great work!

The Lane Family said...

This was an AMAZING post and that is AWESOME what Syd did by being a delegate at this very, very important meeting!!!

Thank you for sharing the information about how well the money is used for type 1 diabetes..that is great to know and even though it may be small steps at least they are working on it!!!

The picture of the capital looks a little familiar :)!!!

Kristin said...

Great post! :D I've heard people rave about Children's Congress - how great it is for their kids and for the effect it has on legislators. The BGs you guys had to deal with (how frustrating) speak to the need for the artificial pancreas as a safety net - great that kids like Sydney are helping move the FDA along!

Casey said...

was the football player Jay Cutler? I so wish we could have met up during this trip. next time for sure! sInce Hadlee and our baby are less than a year apart, maybe we can even fit in a playdate! :)

Casey said...

oops... hope this is a second comment from me.

Jay Cutler was probably the football player. He recently got married, I think.

Anyways, I wish we could have met up while you were both here. Next time you come to congress, we have to plan it. Hadlee and our baby will be less than a year apart. We can have a playdate too :)