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Monday, August 25, 2014

And she's off!




Today Diabetes decided to give me the big ol' double middle finger.  I woke up to find a nice 235 staring back at me on the meter.  Of course on all the days leading up to this one she had been waking up in range.

But never mind that.  There is a reason I wake up super early... So I can catch these high BGs, pre-bolus, and make sure she's on her way down before breakfast. All in plenty of time to get her off to school.

So that's just what I did.  Except...

Except THIS morning I received a Bolus Interuptus in the form of a shrieking pod.  The PDM tells me all but .05 was delivered, but that's what it ALWAYS says.  I think the PDM likes to lie sometimes.

But all is well.  The pod was changed, breakfast consumed, and one very happy girl got on the bus and made her way to first grade

All the while, I know she's doing okay.  

We've come a long way, baby.

Sunday, August 10, 2014

Just... wow.

I have been meaning to post. Really.

I have all sorts of bionic pancreas updates, videos and information from Elise's experience that I want to share.

But I can't.  I sit down to type and all I want to do is cry.  It has been so incredibly hard to get back to "normal", whatever THAT is.

So I thought I'd share a story instead.  At first it will make you mad.  Really mad.  But in the end I think we can all agree to just laugh.  Because if you don't, you'll cry.

And I have done enough of that in the last three weeks to last me a lifetime.

Yesterday, our family, as well as Laura's, went to a local water park.  Hawaiian Falls hosts two "Champion's Days" every summer.  This is where they open up their park to the families of children with special needs two hours early, and at a discounted price.  Our family of five stayed all day for only $15.  

We love this place.

Anyway, Elise and I were standing in line for one of the slides when a little girl, perhaps around 4 or 5, asked Elise what happened to her leg (where her pod was).  Lately Elise has wanted no part in "talking diabetes", so I explained to the little girl that Elise has type 1 diabetes, and that she was wearing an insulin pump that gives her medicine to keep her healthy.

And that's when the child's mother leaned over and said, "you see, Ava, that is what happens to you when you eat too much sugar."

Wait.  

What???

Was I suffering from severe heatstroke or did this woman just erroneously use my child to scare her own?

Seldom am I rendered speechless, but it was like all of my words just simultaneously blew out of my head while my jaw hung somewhere two stories below the tower of stairs we were on.

I snuck a look at Elise who was giving me some googly eyes while shaking her head, so I turned away from the grossly misinformed woman and knelt down to Elise's level.

"You know that's not true, right?"

"Yeah Mom... I know."

"Do you mind if I explain to her that she's wrong and tell her about the real cause of type 1?"

"No Mom, I don't want you to."

There was a bit more back and forth, but the gist of it was Elise really didn't want me to try and do any educating.  So I didn't, but silently fumed about this woman and her hurtful and mistaken statement.

When it was finally my turn to go down the water slide, I saw the woman at the bottom waiting for her children.  Since Elise was still at the top, I took the opportunity to set the woman straight.

"I just wanted to let you know that type 1 isn't caused by eating too much sugar, it's an auto-immune disease where my daughter's pancreas doesn't make insulin anymore because the insulin-producing cells were destroyed."

What came next floored me as much as what she had said earlier.

"Oh, I know about diabetes... I just wanted to scare my daughter, she eats WAY too much sugar.  We have all sorts of diabetes in my family.  Type 2, type 3... plus they're all Italian."

At that point, I chose to walk away.  Like I told Fred when I related the story to him, "you just can't educate the stupid out of people."

Today I can laugh at it.  But what I really wanted to say to her was, "Listen you erroneous boob... how dare you use MY child and all the hardships she endures just so you can frighten the sugar out of your daughter. Plus, with one incredibly stupid statement, you manage to not only insult me and my child, but all type 1s.  And type 2s.  Plus the Italians.  If I can compare your comment to ALL the comments I have ever heard about diabetes to a garbage pile, then yours is the biggest, poopiest, steaming diaper full of crap in there."

I know this lady was not the norm.  I've had all sorts of responses when I put on my advocating hat. Most people I've talked to will actually listen, and sometimes even thank me for telling them.  But this woman sure took that cake... all 25, full-sugar grams of it.

Which, incidentally, did NOT give my daughter diabetes.

Friday, August 1, 2014

Two weeks... gone in a flash

The pictures are coming fast and furious via text. Fred is already at camp this morning and is getting to hug our little girl for the first time in two weeks.

I am so beyond jealous, it's not even funny.

She looks happy.  Older.  Wiser, even.  But she still looks so little and I can't wait to see her with my own two eyes.


From all reports, she did well.  Loved camp and even the bionic pancreas.  I'm excited for when Fred meets with the team to find out all the details.  Since I can't be there in person, I will be there via Skype. Thank goodness for technology.

These last two week have been glorious.  And terrible.

I am so glad Elise had this oppourtunity to spread her wings and be free and amoung her people.  The fact that she did so well on her own at the tiny age of 6 (and for the first time ever), speaks volumes about her strength, and I am so proud of her.



And yet it has been overshadowed by the loss of our son.  While my heart should be rejoicing, it is instead shrouded in sadness. And I hate that this experience will be forever tainted.

I've been told that in time, that the sadness will grow dim.  I just hope that the joy will shine brighter as we get closer to the bionic pancreas being a reality for all with type 1.

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

Saturday, June 28, 2014

Breaking News



 And now you know why I've been so quiet lately...

Tuesday, June 24, 2014

Yes, even babies can get type 1

Intuition. 

Mommy-gut. 

I just knew. 

Upon hearing that Elise was diagnosed at such a young age, I am often asked how we knew Elise had diabetes. The short answer is, at her 12 month well-child visit, the doctor did a urine test and found sugar. Elise had no symptoms except she didn't gain any weight between 9 and 12 months. A sign that something ominous was coming our way, but as a stand-alone symptom, nothing special. 

The long answer starts way before that. Probably closer to when she was 6 months old. Elise had a UTI. Then, strange fevers that would come and go every day. She would always start the day off normal, then her temperature would rise throughout the day until she was around 103 by bedtime. The next morning, everything would reset. 

She had another UTI. The fevers persisted. Thankfully, Elise's pediatrician didn't write me off as some crazy first-time mother whack-job. She believed me. Between the ages of 6 and 12 months, Elise had kidney ultrasounds, a CT scan, and a VCUG (a test using x-ray to determine if there are any bladder abnormalities). She was also seeing a pediatric Nephrologist (kidney doc). 

Everything kept coming back as normal. But my gut kept telling me that something was wrong. She wasn't the same little baby she had been just a few months before. She hardly ever smiled anymore. She was cranky. And those fevers just never went away. Still, there were none of the classic signs of type 1 diabetes. 

When she finally was diagnosed, she was in the very early stages; her fasting was in the 120s. Her A1C was 6.5. She wasn't even on insulin at first. But being vindicated has never been so heartbreaking.  

I often wonder how long it would have taken to recognize the tell-tale symptoms of type 1. Would her story, like so many of the babies, be one of almost losing her? As much as I hate the diagnosis, I am thankful we didn't have the added trauma of that. 

So why do I write this? Because sometimes, when I'm bored (which isn't all that often anymore as you can tell by my posting frequency), I look to see how people stumble onto my blog. And the phrases that make my heart skip a beat are ones like: 

Can babies have diabetes? 

Something is wrong with my baby 

Symptoms of diabetes

To those of you who find this post by googling something like the phrases above, I say this to you: Trust your gut. You know your child best. If your doctor scoffs at the notion of type 1, demand a test. It takes 5 seconds. If they won't, go to a pharmacy and buy a meter that comes with some strips. That $30 could save your child's life. Elise's pediatrician is amazing, but not all doctors are so willing to listen to the parents. 

And above all, if your child has any of the symptoms for type 1 diabetes; unexplained weight loss, unquenchable thirst, frequent urination, uncontrolled hunger, fatigue, nausea, stomach pain, blurred vision, rapid breathing or fruity-smelling breath, get them to the nearest ER as quickly as possible and ask them to test for type 1.

This post has been on my heart for awhile.  Ever since I read (yet another) story of a child passing away from undiagnosed type 1.  The parents sought help (multiple times), but the doctor ignored the symptoms, saying it was the flu.  This doesn't have to happen. It shouldn't.

Parents, know the symptoms.  And above all, trust yourselves.