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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RIP Pump #1

On Friday afternoon I got a phone call from C letting me know that while swimming (with his summer day-camp), he noticed his pump’s screen was filled with water and he couldn’t get it to turn on.

Yes, that’s a small lake of water in the bottom of the screen

*Yes, the Ping is waterproof.  Yes, I’ve let him swim even with the new one already.  No I don’t think it’s a problem.  C’s Ping has been in the ocean, many swimming pools, jacuzzis (oops! taken off quickly), and water slides and lazy rivers at the water park.  I completely trust its waterproofness.  I later discovered that there was a small tear in the rubber covering the buttons that allowed the water in. 

I called Animas and a new pump was scheduled to be delivered the next morning.  It would end up being about 18 hours later.  I tried to get a hold of his Dr. and another Dr. that he’s seen to double check the amount of Lantus I should give.  I didn’t hear back from anyone for about 3 more hours.  Only 15 hours left until he should be back on a pump.  As soon as the pump should have arrived, we were to be jumping in the car and heading to Dodgers Stadium for the game.  I did not want to deal with overlapping the Lantus and the pump’s basal.  I didn’t want to deal with trying to figure out when the Lantus quit working and the pump started.  I would’ve been happy to under normal circumstance, but not while we’re out trying to watch baseball and eat stadium food in under the blazing hot sun.  I wanted “easy.”

This may or may not be for everyone, so please don’t take advice from me…  I decided to forgo the Lantus and just give corrections every 3 hours. (Yes, I checked with his Dr. to make sure they thought it would be ok FOR US)  It ended up going really well and his numbers were suprisingly “in range” (I’m calling under 200 “in range” when we’re talking about no basal).

At bedtime his number was 117 and he wanted something to eat.  It would’ve only been about 3/4 unit of insulin to cover it and he didn’t need a correction.  I was torn as to whether or not he should give another shot.  I decided against it being that we’d be correcting soon enough.

When I walked in his room carrying a meter, alcohol, a syringe and a vial of insulin I felt fine.  I moved his blanket to find his hand and immediately it hit me.  My son looking so perfect was falling apart on the inside.  I knew his body was being ravaged from that stupid GoGurt he ate.  I realized how the pump masks the issue so well.  Sure there are highs and lows but they always seem so easily treatable.  Knowing there was no pump and no basal, the reality of what would happen if my son didn’t have insulin hit me very hard.  My stomach was so tight waiting to see his number 347 pop up and the 0.7 right after on the ketone meter.

I had to try to wake him from a deep sleep, get him down from his bunk bed and into my room so he’d wake up enough to give himself an injection (he did not want to grant me permission to do it in his sleep).  Two hours later he was in the low 200s with no ketones and had to get up to give another shot.  He was hovering around 100 when we woke up and 97 three hours later when we were getting ready to leave for the stadium.  It’s really interesting seeing how the body reacts when it’s in shock like that.  His numbers were actually super manageable.  Not what I’d expected.

p.s. whole other story but…. UPS didn’t get his pump delivered in time for us to have to leave.  Luckily I text messaged the rep in Los Angeles who we’ve gotten to know pretty well.  He met us 15 minutes away from Dodgers Stadium to hand us a loaner pump.  What a blessing!

Super Fun Day

Yesterday, Camden’s summer day-camp went on a field trip to Hurricane Harbor. If you know Cam’s diagnosis story, you’ll know that it was last summer’s trip here that I first noticed he had the symptoms of diabetes…

Anyways, this would be our first time going back and our first time having to tote lots and lots of gear along with us. I figured I’d better blog about it because it all worked so damn smoothly, I couldn’t believe it!

First, we brought lunches to eat in the parking lot before going in and carried (in the backpack) bags of chips, peanuts, powerade and almonds. The backpack also held a blood glucose meter, extra test strips, an extra infusion set & cartridge, glucagon and plenty of glucose tabs. The backpack stayed in the locker. These were all ‘extras’. In my car I had a cooler with the same things, plus insulin and syringes.

With us, I carried an insulated lunchbox labeled “DIABETIC-Emergency Glucose” (so nobody would be interested in waking off with it) that I left at each ride while we went on. It held glucagon, juice boxes, glucose tabs, peanuts, a washcloth (for drying hands before testing), and tegaderm for covering the infusion site & keeping it dry.

Camden had his pump in the pocket of his trunks with the tubing fed through a hole I cut an plugged in along with a tube of glucose gel. He always keeps a tube in his trunks pocket in case he goes low in the water and needs it asap.

I found a waterproof pack (large size, $15) that would fit his OneTouch Ultra Mini in it’s case that I wore around my neck and I also wore a tankini that covered the fact that I was wearing a SPIbelt around my waist with a ziploc bag filled with glucose tabs in it.

We were set.

Does this sound ridiculous? Yes, clearly it does. Do ‘normal’ people with diabetes do this or am I just nuts? I have no idea. That’s kinda what I’m wondering. How the heck do you do something like a waterpark and not have to worry about everything that could go wrong? Am I an over the top worrier, or is this just the way it is?

Anyway, we had a great day without incident. Cam was able to test anytime he needed to due to having the meter with us and not having to leave it somewhere dry. I was able to hand him glucose tabs every time I thought about it without interruption. His blood sugar was in the 80s every time he tested. How’s that for a freaking great day?!?

Anyways, here’s the icing on the cake. Camden wanted Ben & Jerry’s ice cream from the stand they have there. BUT, Ben & Jerry’s doesn’t confirm gluten status on their website & I’ve stayed away from them ever since I learned that. BUT, it was hot, he was hungry, he was exercising, his blood sugar was only 80 and he couldn’t eat anything else they sell there. Chips and nuts lose their appeal sometimes. I decided we’d go for the least risky and get him Vanilla, even though he wanted Mint Chocolate Chip, in a cup. I debated whether or not I wanted to talk to the kid working the stand about the issue. Finally I did. I told him my son had a food allergy and needed to stay away from the cones, so if he saw any crumbs in the ice cream, could he please avoid them? His answer?? “Oh, does he have Celiac? My brother does too. I have a list here of all the flavors that have no gluten, do you want to see it?”

Can you believe that? Guess what was on that list, Mint Chocolate Chip. Camden enjoyed a big ole scoop of it in a bowl.

Car Ribbons

You know those ribbon magnets everyone puts on their car to show their support for some cause or another?  Well, I try not to be one that does something that everyone else does, but I do have a ribbon magnet.  It’s green and it says Celiac Awareness.  I decided to put it on my car because first) I bought a new car that looks like every other car and I needed something to tell it was mine; second) Most people I talk to have never heard of Celiac Disease, so I might as well throw out a little awareness while I’m driving around.
So this morning we’re at a stop light when the car behind me backs up, pulls up next to me and motions for me to roll down my window.  She asked me where I got it and told me she loves it.  I told her ( http://www.glutenfreeforever.info/awareness.html ) and asked if she had Celiac Disease and she said she did.  I said so does my son and motioned to him.  She looks at him and say, “It’s a pain in the butt isn’t it?” and they both laughed.  It was perfect!  It was the first time we’ve met anyone else with it and it was such a cool way to find out.  Light turned green and we seperated, but C kept talking about it.  It was just one of those moments that leaves you in a good mood.  I’ll stop worrying about how “typical” I am with my ribbon magnet now.  🙂

2 weeks with the pump

Tomorrow will be 2 weeks with C’s pump.  Last Tuesday we packed up and headed to Outdoor School with his 5th grade class.  AKA 85 10-11 year olds.  His blood glucose was running between 280 and 350 for a few days.  I was stressing about it, but he couldn’t miss this trip.  He would’ve hated his diabetes if it ruined it for him.  I went with the school as a cabin leader and to keep an eye on C.  Wednesday he got really upset and emotional.  Tested and of course… 404.  I had been thinking that our Dr. got one of our settings incorrect.  C’s her first patient on an Animas pump, so it probably just was set up differently.  His correction doses were only half of what they should be.  Or his insulin sensitivity factor was double what it should be.  Same thing.  We were out of cell range and I didn’t really care about calling to check if it was ok to change anyways.  The next day after making the adjustment, he was in the one hundreds.  Closer to the 200s, but still.  A significant improvement.  This camping trip also happened to be during the craziest storm I can remember having in quite a while.  Thunder, lightening, hail and lots of rain.  Our hikes were limited due to this.  The first hike C went on on Wednesday (after changing his ISF) I was in a cabin leader meeting and they didn’t tell me they were leaving… He got back and told me that he went low twice during the 2 1/2 hour hike.  He didn’t test because the leader kept moving  AND he didn’t tell anyone.  Just ate some glucose tabs and kept going.  His numbers were pretty good other than that.  Next two days I made sure I was on the hikes and giving him gatorade while we were going.  I had the small bottles that are 20 carbs each.  I gave him 1/3 at a time about every 30-45 minutes.  When we got back from the first one his bg was 85.  Thank goodness I was there with him forcing that gatorade down or he would’ve been a mess!  Anyway, I’d call it an overall success that we went to camp in the middle of nowhere only 6 days after starting the pump and we handled everything relatively well.
Tomorrow’s his appt with the Dr.  I’m excited to see how much he weighs.  He’s been starving himself since diagnosis.  He always underestimates what he’s going to eat so he won’t get too full.  Poor guy always ends up wishing he could have another shot.  Now, I swear he’s eaten about 10 meals a day since getting on his pump.  Everytime I look at him he’s eating again.  It’s fabulous.  His whole life is centralized on eating.  So, now that he’s got gluten out of his life, which has already helped him gain a few pounds, and now eating when he’s hungry, I bet he’ll be as big as me pretty soon.

learning to deal with curveballs

Last Saturday we went to Supercross.  Every other year that we go there’s a tradition.  C EATS.  Nachos, soda, cotton candy, etc.  This year was new, but the same.  I brought our own gluten-free, carb-countable foods: chips/cheese dip, carrots/ranch, apples/peanut butter, sunflower seeds AND yes, cotton candy.  The kind that comes in a package so you know how many carbs to expect…
I timed it so he’d have time to have insulin twice.  Eat right when we get there and then 2 1/2-3 hours later.  First time, we tested, gave insulin and he had everything but the cotton candy.  I figured I’d check his blood glucose again before the cotton candy and make sure it was still appropriate to give it.  Before that happened, he tells me he’s low.  We pull out the meter to test, give a poke, apply the blood and with that the meter goes blank with a flashing battery symbol.  WHAT?!?  He took his carbs while I went through in my head how to handle not having a meter with us.  I have some serious OCD.  So far it seems to help with the diabetes because I am a freaking perfectionist about it all an double triple quadruple check everything we do.
Preparing to go to Supercross took me about 2 days and I went back over everything I packed about 50 times.  If you leave the stadium, you can’t come back in.  That means I couldn’t leave a cooler with double his supplies in the car.  I had to carry everything we neeeded or might need.  I had two insulin pens, a handful of needle tips, two vials of Lantus, a whole bag of syringes, alcohol swabs up the wazoo, extra jars of test strips.  I HAD two meters.  But one was the one that came with his insulin pump which we hadn’t even started using yet.  It costs $200 to replace.  I unpacked it thinking I’d rather not risk anything happening to it.
So of course, a minute after seeing this battery flashing all I could do was laugh.  How ironic that the one thing I didn’t prepare for happened.  So, we went on with life.  Gave insuling a cotton candy and enjoyed the night.  We got home a little after midnight.  I tested him and it was 238.  Higher than most nights, but not really by much.  I was pretty stoked actually.  This was our first time having something sooo “forbidden” like cotton candy and we did it without knowing what his blood sugar was from earlier with a low thrown in for good measure and we made it back with no problems.
A month ago (and definitely before that) I would’ve given myself a heart attack over this kind of wrench thrown in the spoke.  I was so thankful to have the comfort to laugh at the situation and make due.  Thank God for time healing things!

a week later

home a week and things are going pretty well. I’m feeling a lot less emotional and moving on. Life’s close to normal. The scheduling with meals at the same time every day might be the hardest part for me right now. I’m still so darn tired and I have to stay up until 9:00 to give insulin, wake up at 2:00am to test his blood and then be up and ready to give insulin and breakfast at 7:00am. During the day I have no time to nap because it goes like this:
insulin/breakfast, go to work, give snack, leave work, give insulin/lunch, give snack, give insulin/dinner, give snack, give insulin, go to bed, wake up, start over…
Hopefully by next week I’ll be feeling even better all over again. I think so.
We’ve been trying to continue on with our normal activities and yesterday went to Vertical Heaven for the boys to do some rock climbing. They had so much fun and were both BEAT by the time we left. Tomorrow is the X Games. It’s been something I’ve been scared of since I found out about the diabetes. It will be the first time we leave the comfort of our city and truly try to do whatever we were going to do with this added issue. I’m feeling like his glucose levels are closer to a steady pattern than last week, so hopefully all will be well. I’ve got my fingers crossed. Then, Saturday and Sunday we have birthday parties to go to. I may bring our own food just so I know how many carbs and that there will definitely be something for a picky diabetic…

p.s. i just contradicted myself. I emailed someone who’d written to me and broke down as upset and scared as I was last week. God, I hope it’s true that you really do adjust and get the hang of all of this stuff quickly.