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Monday, July 28, 2014

Going Bionic: Our Family's Journey

I'm very proud of my husband's write-up on Diatribe about our experience so far with the Bionic Pancreas trial. 

Please click here to read it!

Friday, July 25, 2014

Darkness

If you are FB friends with my husband, you have already heard the news, but for those of you who are not, it is with immense grief and sadness that I share that we have lost the baby.

My water broke a week ago, but the baby still had a strong heartbeat, so they sent me home to see what would happen.  Unfortunately, the follow-up sonogram on Monday showed the heartbeat was gone and the baby had died over the weekend.

Monday I was induced and delivered a tiny baby boy, who we named Nicolas Daniel.  The pain and heartbreak is indescribable.

I am thankful that we do have the joy of Elise's involvement with the bionic pancreas trial to focus on, and I will do my best to post updates.

Thank you to all who sent messages via FB, or email.  I have read every single one of them with tears in my eyes, knowing that we are loved.


Sunday, July 20, 2014

Who has two thumbs and a bionic pancreas?

This girl!

Meet the first and only 6 year old girl in the world using a bionic pancreas. Proud doesn't even begin to describe how I feel right now.  

I haven't been able to talk to Fred for very long, but by all reports she was very brave and never even blinked when he said goodbye. She already has a BFF in her cabin.

Hopefully I'll be able to do another post soon (or a guest post by Fred), complete with pictures of the bionic pancreas in action.

So amazed by these people and what they're doing for all CWD and PWD!


Saturday, July 19, 2014

Leaving on a jet plane

I don't know how it happened so quickly, but as I type this, Elise and Fred are flying to Boston so Elise can spend two weeks at Camp Clara Barton and participate in the Bionic Pancreas trial. I am still trying to sort out my feelings, and there are so many emotions all at once I scarcely know where to start.

Sadness... Because it's only been a few hours and already I miss her more than I can express. It's like a part of me is gone.

Fear... Will she be okay? Will they take care of her? Will she like camp? Will she make friends? Will she be scared? Will she miss me? Will the trial be too much for her?

Disbelief... Where has the time gone? Wasn't it just yesterday that she was diagnosed and I sobbed my heart out wondering if I could ever let her out of my sight?

But most of all, pride... Because my brave little girl is doing something amazing for her and ALL people with T1 out there. Every parent thinks their child will do great things, but I never imagined this. She is excited about being a "scientist" and a "researcher", and is doing it all without the security blanket of her parents. And she's only 6. The mind... it boggles.

As I hugged her goodbye and tried to physically restrain her from leaving, I did my best to hold back my tears. Because the last thing she needs to see is her mess-of-a-mom blubbering. I didn't have to worry... she didn't even look back as she ran out the door.

I'm trying to be okay with that.


See you, baby girl... don't forget to miss me a little

Wednesday, July 9, 2014

Bionic!

See that face?  That is the face of one excited little girl.  There is so much to update on our recent adventures, but this piece of news is a big part.

In 11 days, Elise will be one of the first 6 year-olds in the world to trial the Bionic Pancreas.  She will be headed to Camp Clara Barton for two weeks, and will be wearing this revolutionary device for 5 days.

It's an amazing concept, and I was able to hold it in my hands.  I'm hoping to write more as this adventure continues and keep you updated.

But for now we're finishing up our vacation and enjoying our time together before re-entry into the real world.

And I'm soaking up all the time with Elise that I can before she leaves to help change the future of people with type 1 diabetes.

To see more about the study and camp, check out this video:

http://youtu.be/U5JVrPM6FFY