Summertime

We have had a really busy last couple of weeks!

We have a local group of type 1 families that get together now and then.  Sometimes with kids, sometimes just moms (and occasionally dads).  It stemmed from Diabetes Outdoors and sort of took off from there.  We have a facebook group where we can all ask questions, share thoughts, or just be constant support.  Last year, a handful of us went to diabetes camp together.  This year, I think we had 14 families come along!  It’s so awesome to get to build on friendships but even better that we’re also building relationships and friendships for our kids in their own community.  They’re all different ages and genders, but they all get to know each other, have get-togethers and know that their parents are all friends.

This is just the families from our local area at camp! We made up about 40% of the population that weekend!

The following weekend, Bret Michaels was playing at our county fair and we decided to take a bunch of the kids.  Parents worked together to get a hold of his manager and they decided to allow a quick meet and greet before he played.  As we lined up for a picture he said if anyone needed anything, they’ve got lots of supplies.  I responded that the same went the other way, if he needed anything, we’d all have plenty of supplies with us and he said, that’s right, we’ll take care of each other.  Pretty cool.  He signed autographs for a few kids and generally seemed like a good guy.

Kids waiting for Bret Michaels

Camden meeting Bret Michaels

Then, last night we went to a Dodger game.  I’d won tickets in a drawing from JDRF just a few days before and figured it would be great training for Miss Molly!  As we walked into the stadium we were shocked to see a guide dog group was in the same section as us with several of their puppies-in-training!  I talked to a couple of the girls and found out that none of them had been there with the dogs before either.  We were all wondering how these big dogs would fit, but it worked!  We brought a “place” (rug) for Molly to lay on under our seats and she did great.  We had to clear out piles of  peanut shells that were tempting her (I’m pretty sure she found a few strays to snack on) but otherwise she fit just fine.  Although she was in super tight quarters, she was on excellent behavior and twice scooted herself around to reach and grab her bringsel (C was running pretty high for some unknown reason).  Without any commotion or having to get up she grabbed it, we responded by testing C and then gave her a treat and lots of petting.  She was able to keep her excitement totally under control and stay right where she was.  I’ve often wondered how alerts will work in certain situations and this eased all concerns I’ve had.  I did take her up to the deck above our seats to get a drink of water and walk her around a bit and I think most people were surprised to see a big dog walking up the stairs.  She was such a good girl, I don’t think most people had realized she was there!

Miss Molly checking out the game

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Running Into the Horror Stories

I don’t know how to start this other than to say that it’s not an upbeat positive post, it’s negative and scary.  I wasn’t sure how/if to share this with anyone else, but keep feeling the need to express the story.  That’s my disclaimer.

Molly (C’s Diabetic Alert Service Dog) came home a few days ago.  She’d been with her trainers for an entire month.  She goes to work with three different super-trainers who work on obedience, public access and scent work in order to make sure we’re on track, see where we need help and give pointers.  We picked her up from T who told me this story.

T and a friend took Molly and some kids to a restaurant for public access work.  The kids wanted to eat outside, but the adults stayed in with Molly for practice.  After eating, they went to the outdoor area to talk to the kids.  There was a couple there and the man walked over to tell T that they give money to support a service dog organization.  T explained that Molly is a Diabetic Alert Dog and what her role is.  The man proceeded to tell her that they had just lost their son to type 1 diabetes the previous week.  He died in his sleep apparently from a low blood sugar despite having five roommates in the house.  He was 24 years old and using a pump.  He asked T if she would bring Molly over to meet his wife, which of course she did.  T told me that the woman hugged Molly and just cried on her for quite some time.  Molly didn’t budge and just provided this mother with the therapy she needed in that moment.

I can’t imagine how this couple felt meeting Molly.  I can’t imagine how it would feel to be in T’s place.  She told me that Molly had touched a number of people over the month that she was away, but this was by far the most significant.  I can’t figure out how this story makes me feel.  Does it scare me? More than I can imagine.  For obvious reasons, but also it scares me that I could run into this couple or another just like them and be faced with it in person.

C overheard the conversation and asked me about it later.  I asked if it made him worry and he said no because B (our old Animas rep) had diabetes for “a really long time and nothing like that’s happened.”  I wish that were enough for me.

This disease is not just about chasing numbers and trying to achieve your goal A1c.  It’s about keeping your child (or yourself) alive.  It’s praying that everything you’re doing works without ending in tragedy.  I know this isn’t an isolated story.  I have heard way too many of them.  We cannot afford to live in blinders thinking that in this day and age our kids will end up just fine.  It’s not a fair to the families who’ve done all they can and who’s kids weren’t ok.

Silly Questions

Once a year we travel to UCLA to meet a special team of endocrinologists that C’s insurance, evidently, trusts more than our own.  They do a thorough overview of C, his diabetes, his pump settings, A1c, etc.  They ask a million questions and then submit paperwork to our insurance that a)Yes, we’re taking care of his diabetes, b)Yes he does need all that stuff you’ve been paying for.

When I’m filling out the paperwork this one question really sticks out to me.   Like, seriously, is there a weirder question to ask on medical paperwork regarding a child on insulin??

Yes. Countless. Eat Sugar.

You Are Getttttting Sleeeeeepy

Last night we couldn’t shake the lows, or maybe the “too-low-for-bed”s.  A 65 at bedtime got 24 carbs of ice cream.  3o minutes later a 59 got a juice box.  20 min later he was 96.  Cool, removed pump and he took a shower.  Came out 40 minutes later bg 87.  I lowered his pump to -50% and he had some popcorn.  Normally I wouldn’t dream of keeping that 50% for more than 2 hours TOPS, but I can’t wake up to alarms anymore.  It’s like my brain is so used to hearing them that it just doesn’t care anymore.  Sometimes I’ll hit snooze for 2 1/2 HOURS before I realize I was supposed to get up!!!  After that much alarming, I feel like I didn’t get a wink of sleep.  Anyways, I left it at -50% for four hours. JUST IN CASE.  When I finally did get up to check he was 386.  Not cool.

Two weekends ago the plan was to do night basal testing.  I set alarms for every 90 minutes for the entire night.  I woke up in the morning and realized I didn’t get up ONCE!  What the heck?!?

 

So.  The plan?  My mom’s on the hunt for a hypnotherapist for me.  She’s going to find one that can hypnotize me to wake up when I hear the alarm.  Not only that, wake up feeling refreshed.  I’m pretty excited.  She got hypnotized when I was a baby to quit smoking.  They had her picture picking up one of those gross spit pots (like in an old saloon) and drinking from it every time she thought of smoking and it worked!

 

What if this helps?!  It could be the greatest thing for a D’rent ever!  Wake up easily? Feeling refreshed?  Sounds freaking great.  I’ll be sure to update when she finds my miracle-worker.

 

The Look

My dad had a look when I was growing up.  I remember if you pissed him off real good his eyes used to look like he was going to turn into a werewolf and kill you.  It used to scare the shit out of me.  I was sure, growing up, that he might kill me one day.  When I got older I realized that my uncle (his brother) can do the same scary look with his eyes.  I’ve also seen it in my sister.  I think I might have it, too.  Sometimes I can look at my kids and don’t have to repremand them.

C doesn’t normally hide his diabetes.  He keeps it right out in the open and doesn’t seem bothered by anyone noticing.  However, he recently started playing on a basketball team and does not want to test or have his pump show in front of them.  I haven’t really addressed it, but have reminded him a few times that nobody will think twice about it.  In the meantime, we test before going in, remove the pump for the game (not to hide it but to prevent his going low. Normally along with -50% and hour before and after playing), and retest after the game.

Last night he was high before the game and I decided to correct even though he was about to play.  Normally I don’t since playing will drop him so much, but he’s been having some stubborn highs this last week.  Halfway through the game, I was feeling really nervous about where his number was at and brought his meter over to him on the bench.  There was another kid sitting next to him.  Coach (who is a 6th grade teacher and has had T1 students and is quite understanding) says, “Oh great, are you going to check him?”  I told him I was and his response was, “Ok, let’s take him over there to the bathrooms to do it.”  I looked at him and didn’t know what to say.  However, it was one of those moments where I think my eyes did the werewolf -I’m going to kill you- looks because he immediately changed his mind and said, “I mean, can he do it right here?”

“C tests wherever he happens to be.” was my response.  I went back to my seat and laughed at the idea that I just gave someone the look.  I felt a bit empowered by my family’s genetic gift.

BG was 247

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.

Night Lows

C has not woken up from a low yet.  It’s been about a year and a half and it worries me.  I have checked him in his sleep in the 50s, the 40s a handful of times and once at 32.  Just sleeping peacefully as though there are no problems.  Everyone tells me he’ll wake himself when he’s low, but really… HOW low??

A few nights ago I checked him at 3am and his number was 82.  He hadn’t had a lot of exercise and there was no insulin on board.  I woke him but he didn’t want juice and asked that I just do it with his pump.  I dropped it to -50% basal for 2 hours.  I normally would’ve done an hour tops, but I wasn’t sure I’d be able to wake up again.

In the morning I went in to check him and saw the juice box on his nightstand had the straw in it.  The wrapper was right next to him.  Panic set in and I tested him…302.  Once he woke up I asked him about it, he says, “Oh ya, I felt low after you left so I drank the juice.”  I told him he’s “GOT to wake me up in that situation…what if he kept dropping lower?? We could have a serious problem.”

His answer?  “I doubt that was going to happen.  I felt pretty hungry so I went to the kitchen and ate the rest of the taco shells.”

hahhaha!  I am sooooo glad he got up and took care of things.  He wasn’t technically ‘asleep’ but 3am sleepiness is pretty close to asleep.  I feel like he has a little more security going on now.