Ping-iversary

At diagnosis, C’s nurse mentioned a pump.  He immediately said he never wanted one because he didn’t want surgery.  We had a neighbor on an insulin pump and we had just assumed that she’d had surgery to have it ‘installed.’  The nurse corrected us and he informed him that there was no surgery involved and he let her know that he still was not interested. 

A few months later I was looking at the OmniPod website.  They had a video explaining how it worked.  I was sold.  I asked C to watch and he freaked out yelling how he “WAS NOT GETTING A PUMP!”  I told him that he could NOT make a decision like that without being informed.  He HAD to at least watch the video.

He watched.  And he was ready to pump.  From there we went on Medtronic’s site  together and saw that they had a continuous glucose monitor built-in.  They got us, that was the one we wanted. 

Not long after we were at the JDRF Walk to Cure Diabetes and saw the Animas booth.  We already KNEW we wanted the CGM but we took their info anyways.  Soon after, we found out that C’s insurance didn’t cover the CGM sensors.  We heard that Animas would be integrating eventually and maybe his insurance would cover it by then.  We went on their website.  C was SOLD.  It was Ping or shots.  There was no other option to him.  The color screen, the sleek looks, the waterproofness, the remote control.  He loved it all.  He asked if I thought we could get it by the upcoming weekend.

To be sure we went to a Medtronic class to learn to use their pump, check it out, push its buttons, try out their infusion sets.  But C knew he would never have that pump.  He tried an OmniPod demo.  After about an hour he said it felt annoying and big and wanted it off.  Of course, I don’t think it ever had a fair shot after he’d made up his mind…

A week later the rep came out  to show us the Ping.  We checked it out, pushed its buttons and gazed lovingly at its beautiful color screen.  We filled out the paperwork that night.  But insurance had other plans.  We jumped through hoops for months and we got denied.  I spoke to the boys’ pediatrician only to find out that he works with our insurance and he’d push it through.  A week later I received a call stating that they’d gotten approval and C’s shiny black Ping would be arriving the next day.

C was hooked up one year ago today.  He hasn’t had a shot since. 

best gift we ever received

Shots were unnatural to us.  We couldn’t get small enough dosages to work right for C.  He was starving himself to not get extra shots or have to eat too much at his meals.  He’d estimate down about how much he’d eat and was always left hungry.  For a kid who doesn’t eat meat or cheese (carb free), it was very hard.

Technology, computers, gadgets… these are natural to both of us.  The day we hooked that pump onto him, we felt like life was back to normal.  Neither of us needed time to adjust, it just worked.  He eats when he wants.  We can bolus the tiniest little amounts so he can do his normal ‘grazing’ again.  We can correct a million times a day if we needed to and it keeps track of active insulin for us.  I don’t have to use my calculator as much anymore.  I don’t have to worry about C doing the math wrong anymore.  That pump gave him his life back.  I’ve never been more in awe of a machine in my life.

celiac-iversary

One year ago today, C ate his last piece of whole wheat toast for breakfast, skipped school in the morning and headed to his regular endocrinologist appointment.  That morning we got the results of his Celiac test and found out why he hadn’t gained much weight back after his diabetes diagnosis.  We realized why his stomach had been bothering him enough to come home from school almost daily.  A million things fell into place and started to make sense.

One year ago today, I went home and started researching Celiac Disease on the computer.  I decided that there MUST be different levels of sensitivity in celiac disease because certainly we couldn’t be expected to follow such a rigid diet FOREVER??  No such luck.

We had 2 weeks before we could see our new gastroenterologist.  The endocrinologist only told us to not eat anything that said ‘wheat’ but what I was reading included so much more.  I didn’t know what to feed him.

One year ago today, we headed to the grocery store and bought everything we could find that was labeled gluten-free.  In that year, we’ve adjusted.  We’ve found lots of great alternatives to the ‘normal’ foods he was eating before.  In that year, we’ve found our that lots of ‘normal’ foods are gluten free.  Some things, like pizza, he says he’d rather go without that not have Domino’s and that’s okay.  People are probably better off without pizza anyways.  In the last year, my son gained back the 10+ pounds he lost before being diagnosed with diabetes and gained almost 10 more.  He feels better than ever.  He doesn’t complain about his stomach, and he’s not as moody.

Sometimes it’s still upsetting and seems overwhelming when you think about the forever-ness of it, but it’s no different from his diabetes.  Whether he as one chronic disease, two, or even more down the line, we’re making the best of his life and he’s thriving despite them.