New Pump Slump

I’ve been struggling to write a post about the new life we are living with the pump.  Ian got his OmniPod on March 10th, and the last two weeks have been….

Exhausting. Frustrating. Liberating. Challenging. Scary. Exciting. Annoying.  Freeing. Confusing.

Put all those emotions together…and I find myself in a New Pump Slump.

I find I don’t really want to talk about his pump with people, because it’s isn’t a magic cure.

People seem dumbfounded that he isn’t “regulated.”

People seem to think that he’s fixed now with this pump.

He’s not.

And while it is a handy-dandy, pretty amazing little piece of technology, and will eventually be so much better….I feel like we are starting over in many ways.

It’s not as scary as it was a year ago when we had so much to learn….

But it’s a change that requires  you to let go of the “control” you thought you had – giving up control and trusting this little plastic pod on his body to do the right things. Yes, we still have the power to adjust the bolus, set the basal…(don’t even get me started on the new vocabulary I’ve picked up in 13 days).

It’s hard.

What we knew worked for baseball and gym days and snacks and meals and bedtime….doesn’t work anymore.

When he goes from 170 to 44 during baseball…

When he doesn’t even feel his low of 38…

It feels like we are failing him….like we’ve forgotten everything we’ve learned.

I know that none of this is true. I know we are doing the best we can and this is just another huge lifestyle change that will get better with time.

But when you are sleeping no more than 3 hours at a time each night….it’s hard to see things that way.

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A New Year and a New Attitude!

Back to school! Year 18 for me and 5th grade for this boy! (Taken by 8th grader MJ)

Ian spent one semester of 4th grade without diabetes and one semester with diabetes.  The second semester was scary, exhausting, stressful, and new.

Not only did summer vacation give us time to relax as usual, but the three months off made a natural break between last year and this year.

Last year Ian used to call from the clinic almost every single day, if not twice a day.  He’d call when he was high, when he was low, when he had a headache, when there was an extra recess, when there was a birthday party treat….

And the nurse from the hospital called a lot.

And the school nurse texted me often.

And Ian’s stepmom texted me too.

That’s a lot of phone calls and texts when you are working.  And believe me, I was happy to have the calls. We were sorting things out and learning the ropes, adjusting to each new event and situation as we went.  But with every phone call and text, I was constantly reminded of the fact Ian had diabetes and I would become distracted, flustered, overwhelmed.  I was definitely not at my best at work last year.

Family comes first though and somehow we’ve gotten over that Why-Does-Everything-Throw-Us hump.  Life feels more normal than it has in 8 months.

Ian has called one time in eight days. What an improvement!  That says tons about his comfort and understanding. He understands highs and why he feels like crap. He also knows that there isn’t much I can do for them. (When we eventually get a pump, maybe there will be an easy fix?)

He is never one to have a lot of lows and when he does, he knows what to do. I honestly don’t think he’s had any since school started though.

Ian’s teacher is super sweet (just like last year) and at our before-school meeting, it was obvious she sees 5th graders as responsible young people and wants them to be confident and independent.  (That is not to say that she leaves him hanging out there on his own. It’s hard to explain but she has a trust/respect for them and gives them a chance to handle things on their own. She does student-led conferences if that tells you anything.)

For example, Ian tests in his classroom now rather than going to the clinic every day for snack and unless he’s feeling really lousy he handles things in the back of the room by her desk.  We felt, as a team, that he was totally capable of handling this part of his diabetes on his own.

The school nurse is also making any calls or texts to Ian’s stepmom before she tries to get in touch with me this year.  She works part-time, is more accessible and is equally knowledgable about everything. (I could not ask for a better stepmom to my kids.) This is a huge relief for me and I feel much more relaxed and focused at work.  The first two days were weird when I didn’t hear from anyone, and maybe it sounds a little selfish, (not my intent) but I kind of like it this way. 🙂

Another great thing is lunch. Last year, Ian packed his lunch every day for the entire semester. Every. Single. Day.

And he doesn’t eat lunch meat and he’s really picky, so it was peanut butter sandwiches or peanut butter crackers. Every. Single. Day.  We had to pack exactly 75g every day as well, so they nurse could give him exactly 1.5 units of Humalog.

This year, we have a plan with the nurse where she adjusts his meds  according to his carb-to-insulin ratio (currently 1:25.) We write a little note and throw it in his lunch box every day. He has been able to buy the tray lunch and pack extras. He doesn’t drink milk, so he brings his own drink and then extra fruit, yogurt, protein bar, etc to round out his lunch. He’s still a very picky eater but there are many main dishes on the tray that he likes  (Tornado nachos, popcorn chicken, hotdogs, chicken patties, to name a few) and now he can have a variety of lunches and not just peanut butter sandwiches, which frankly make me want to gag now after making them for so many months.

We have been pretty good about determining the carbs in the tray lunch based on our knowledge and experience, a booklet from the school cafeteria, and Calorie King. Yesterday I printed out September’s calendar and marked all the carbs.  I send a copy to his stepmom and she checks it out and we make adjustments and cross our fingers. I am keeping a copy of all the menus and will probably have things memorized in a matter of a month of so. (Isn’t it funny how carbs are like math facts? It’s just something you memorize. I never imagined it would be so automatic.)

The heat has been horrendous this year.  None of our buildings have air conditioning and it’s now decided to be summer-like with temps in the high 80s (outside and in the classroom.) My room the other day was 84 degrees. Ugh…..

That has messed a little with Ian’s numbers.  He’s been in the land of 200+ a lot and we made a tiny adjustment to his Lantus but we hope when the heat breaks later tonight that things will level out.

I could not be much happier about the start of the school year. After the road we’ve been down, things seem almost easy.

Speed Testing

Maybe it’s just Ian’s personality but he thinks checking his blood sugar takes “FOREVER.”

Especially if he is playing outside or if he is high (then everything is a power struggle).

Tonight we were getting ready to go on a bike ride about two hours after dinner. Since he’s been running more in his range lately I am anticipating some lows in the near future. (I honestly don’t remember the last time he had a juice box.)

So I suggested he test quick before we left so he/I wouldn’t have to worry. (He asks “What if I’m low?” all the time.)

He gives me that sigh and eye roll and says “It’ll take forever.”

I challenge him. “Time it on your watch.”

I emptied the string bag right there in the driveway.

Test strip.
Lancets.
Oops spilled a few.
Alcohol wipe.
Prick.
BEEP

131. Impressive number.

Even more impressive? 52 seconds from start to finish. (Would have been less had I not spilled the lancets!)

Ian couldn’t deny that was indeed fast but it’s his nature to prove a point and win a challenge, “Yeah, well next time it will be slower….or faster… (His eyes light up). Hey, how fast do you think we can do it next time?”

That’s my boy…

Independence Day!

Happy 4th of July!!

Today marks the 6th month mark since Ian’s diagnosis.

Half a year already?

That doesn’t seem possible. And the same time, sometimes it feels like half my life.

And then I realize it’s the rest of Ian’s life.

I’ve been thinking a lot about this milestone as July approached….and actually, all the milestones of a little boy who is growing up.

Diabetes has been a power struggle for Ian. The loss of control as has probably been the hardest thing for him.

Here he was, on the verge of being more independent, making choices, having a little freedom, and some small privileges and he lost control over the most personal thing – his body.

Never mind the clothing choices he still makes, the games he chooses to play, the friends he wants to be with, and the daily decisions.

He still has choices about his food, but those choices are ultimately controlled by diabetes – when he can eat, how much he can eat, what he can eat, when he has to test…

This really hit me the other night as I was tucking him in, “Don’t worry, Mom. When I wake up and I start getting hungry, I’ll wake you up.  But I’ll try to let you sleep in some.”

The mere fact that he can’t quietly get a bowl of cereal or make a Poptart without me (and medicine) is just not fair.

A 5th grader should have that freedom and feel that independence.

Yesterday he and I took an early morning bike ride and I let him lead. (Usually that is M.J.’s job but she was still asleep when we left.)  He was so excited to choose the route and the competitor in him kept pressing on, making the ride longer and longer.  We talked the whole bike ride about everything under the sun and when we got home and mapped the route on the iPad, we were shocked to see it was 5.5 miles – our longest ride of the summer.  He was so proud and if you know Ian, this will only make him up the challenge and try to ride farther the next time.

Although it was only July 3rd, I found it fitting that the day before his half anniversary we celebrated his independence.

(Today also marks the day that I break free from the “Thoughts” title on every post. It’s more than thoughts about diabetes, it’s our life.)

Thought #49: Life is full of unavoidable disappointments.

Like any parent, I want to protect my kids from disappointment. This seems even more pressing now.

Ian’s already been hit with diabetes. I don’t want him to feel any more stress, or pain, or sadness or even mild disappointment because, honestly, and maybe I’m being dramatic…I feel like it’s Just. Not. Fair.

When his favorite teams loses in the NCAA tournament.

When it starts raining right after we go outside to play.

When I burn the last Pop-tart on a Saturday morning.

When he can’t have the Star Student cupcake on Friday afternoon.

When his basketball team loses with a buzzer-beater.

When people let him down.

When he loses people who are very special to him.

When people break his heart.

As a family, we have suffered great disappointment and loss in the past three months and as a mother, I would do anything to be able to put a giant bubble around my kids. Shelter them from any storm. Build a wall to block the bad guys.  Make every day a sunshiny day.

I know that’s not realistic. And I know that I can’t control every aspect of his life.

But I try. I try really hard. And I know I’ve got to snap out of this. I’ve got to let life happen to him and teach him how to deal with the unavoidable disappointments life throws his way.

Thought #45: Breaks don’t seem like breaks.

There are stretches of days when Ian and his sister are at their dad’s and I get a “break.”

A break from counting carbs, checking blood sugars, and giving shots.

That doesn’t mean diabetes is not on my mind, but I do feel like I can relax and rest and recover. I try very hard to do things for me and not think so much about diabetes. I do the grocery shopping. A little cleaning. Read and write. I do school work. I watch reality tv without interruption or guilt. And when it happens to be nice, I go for a walk.

Last week was a busy one at school as I had parent-teacher conferences.  So it worked out for them to be with their dad for five days straight.

And then, on Friday, I pick Ian up from school and bring him home and it’s like someone flipped a switch.

Game on.

I am instantly in crazy mom mode, counting carbs, figuring out what we’ll have for dinner, looking over his log book, and actively thinking about diabetes.

It’s like they were never gone.

It wipes away all the rest and relaxation.

It’s like the break that never was.

Thought #43: Diabetes can’t change the past.

Last Saturday Ian had the best diabetes day he’d had in over a week.

After a few weeks of fighting lows, Ian was fighting highs in the 200-350 range and his doctor insisted we get some trends before tweaking his meds yet again.

So when he was in his range all day Saturday and got through his basketball game still in his range, we were feeling pretty good.

We had the game, played outside on a rare warm winter day, spent the evening with friends, ordered pizza and still stayed in the range.

I went to bed feeling normal and happy.

So at 2:00 a.m when he was 330…I started to freak out.

I felt like it was a huge slap in the face.

A sucker punch in the middle of the night.

So much for a perfect day, I thought to myself.

I laid in bed and worried for the next half hour…

What did I do wrong?

Did I mess up his meds?

Not count carbs right?

And then I stopped and I thought….

Wait a minute. This 330 doesn’t change a thing. Our day is not ruined. It was still a perfect day. This number right now has no bearing whatsoever on the past.  The past is the past. And it was lovely. It was a lovely day with friends and laughter and pizza and a ball game that ended in a tie.  I can’t let this 330 at 2 a.m. change my memories of the past.

And I fell asleep.

When I woke, I noted the number in the logbook and we began a new day.