"Momma, can you donate your pancreas to someone?"

Tonight Faith got up out of bed and said her pod was hurting her arm.  A quick inspection revealed that it was bleeding.  Because it wasn't yet time to change her pod, the adhesive was still really stuck well.  Even though I was using Uni-Solve to help loosen the adhesive, Faith was still screaming out in pain. So loudly that it woke JC.

He came in the room and hugged and held Faith while I worked hard to remove the old pod as painlessly as possible.  

She'd scream, he'd hug tighter.  

She'd cry, he'd kiss her and try to redirect her attention.  

JC is a sweet old soul, and he's always had a soft spot for his little "Faifers".  

I got the new pod ready to be inserted.  Faith got very upset, so JC picked her up and held her.  He smoothed her hair and talked to her, trying to calm her down.  He helped her choose her stickers to decorate her pod.  What a sweet brother he is.

When the pod clicked and the needled inserted the canulla under her skin, Faith jumped and screamed the most painfully heart-wrenching scream.  I looked up and there were tears running down JC's face.  We both quickly began to comfort Faith and assure her it was over.

Faith calmed down, I cleaned up our mess, and JC carried Faith to bed and tucked her in.

I was sitting in my chair working on some homework when JC walked into the room crying.

The words he said sliced through my concentration.

"Momma, can you donate your pancreas to someone?"

"Why do you ask, JC?"

"Because, I want to give Faith my pancreas, Mom.  I hate watching her go through this.  It hurts me when she hurts, Momma!  If you can donate your pancreas then she can have mine."

By now I'm crying as hard as he is.

"Sweet baby, no, you can't donate your pancreas.  But, you are the sweetest brother to even be willing to do that, JC.  I know it's hard to watch Faith endure all of this, it hurts me too baby.  We have to remember that God loves Faith even more than we do.  He sees what she goes through and it hurts him too.  But, we believe that God works everything for good, and that includes this.  We just have to have faith and keep praying for a cure."

"Will you pray with me RIGHT NOW, Momma?  We need a cure."

Yes, my sweet JC we sure do.

Making The Switch...

Well, I jinxed us in one of my last posts, I think.  Just a few days after I mentioned that we hadn't been on MDI (multiple daily injections) for over a year, we found ourselves having to go back on MDI.

Last Sunday we spent the day at a friends birthday pool party.  Faith is on the Animas One Touch Ping insulin pump.  One of the reasons we went with this pump is the fact that it is waterproof.  People (myself included) are always amazed that she can bathe and swim with it on (or drop it in the toilet) without ruining it, but she really can.

That is, when she hasn't messed with it.

Like the first time, when she had somehow popped the audio bolus button off - and I didn't find out until we'd spent the ENTIRE day at the spray park.  Oh, yeah and that was late in the evening, so Animas couldn't overnight it until the next day - leaving us on MDI for a couple days.  With full strength insulin. And a baby with a correction factor of something like 1:375.  Fun times.

Or the next time, just a few days later when she was teething...on her insulin pump...and chewed off the front buttons.  Seriously, she was out of my sight for like 20 minutes.

Or the 100 times that she's pulled off (and lost) the audio bolus button, which causes it to no longer be waterproof - which causes us to have no choice to order a replacement.

Or the times she's played with the cartridge and loosened it enough for it to lose prime.

Or the scariest times when she's twisted off the cartridge cap and played with a cartridge full of (life-saving, yet lethal in the wrong dose) insulin - squeezing enough insulin into her body to kill her within minutes.  Thank God for Ruby alerting us to that and saving Faith's life.  That's a story I'll tell yall on one of the Where's Wuby? Wednesdays.

This latest time, last weekend, there was a pinhole in that darn audio bolus button.  She got out of the pool to eat some birthday cake, and when I grabbed her pump to bolus her I couldn't get the buttons to unlock.  And then I noticed water bubbling up out of the middle of the audio bolus button.  And then the screen went black.  Ugh.

I think we're on our 6th (ish, I've lost count) replacement pump.  In a year.

I have to say, Animas' customer service has been GREAT.

Every time Faith breaks her pump I call and explain, and expect them to give me grief, but they never have.  They just overnight us a new one.

And we've tried EVERYTHING to limit her access to her pump.  We've put her pump in a pocket on her back, locked the pump in a pump belt, scolded her - you name it.  Nothing has worked consistently to prevent her from meddling with her pump.  Imagine tying a cell phone to your toddler and telling them not to touch it.

At this point, it feels about like handing her a loaded gun to play with and asking her to not pull the trigger.  She doesn't have any idea how much power (or danger) she holds in her hand.

After much prayerful consideration we have decided to switch to the OmniPod insulin pump.  It has its own set of challenges, but it solves our immediate (and major) problems by eliminating buttons and insulin cartridges from the equation.

We were incredibly blessed to have an anonymous donor step forward to pay for the entire thing.  We are so thankful.

So in the next week or so we will be making the switch.  We'll keep you posted.