Getting to know you. . . .

. . . .getting to know all about you. This is the way I feel about Grace's pump. So many of you have been so nice to check in and see how things are going.  I know a lot of you are curious to hear about our experience so far.  Sorry it's taken me so long to post an update. The truth is, life with the pump is crazy, unpredictable, awesome, and frustrating.

Here is the awesome: Grace loves her pump--completely, totally adores it.  All of our fears of her freaking out and not wanting to wear it have not come to fruition.  From day one, she clipped it on her pants and went on her way. We change her site every 2-3 days and that could be going smoother. She squirms and gets really anxious. Once it's over though, it's done.

Here is the frustrating: it's not like you just get hooked up to the pump, CHOP plugs in some numbers, and there you go. Enjoy! Our doctor sent me an email before we started pumping full of "you'll be frustrated" and "lots of sleepless nights" and "sometimes wishing you could go back to shots." I gave that a big ole whatever. We'll be fine! We're diabetes superheroes! We're so smart we'll figure this thing out in a day!  And, to a certain extent, I believed that to be true the first week.

And then Grace's sugar began dropping and dropping and dropping. And then her night time sugar began climbing, and climbing, and climbing. And then I realized what the doctor said was true. This thing requires a lot of work to get right. The wonderful thing about the pump is you can adjust Grace's insulin all day long.  Having an active morning, let's cut back on the insulin a bit. Having a waffles for breakfast, let's crank the insulin for a bit. Going high over night, let's see if we can get that back in range. But in order to get things just right, you fail. You almost kind of have to fail to realize where the pump settings need to be.  That means Grace will go low and Grace will go high as I attempt to find just the right dose to keep her where we want to be.  That means checking her sugar around the clock, getting constant updates from the school nurse, looking at numbers, and trying to identify trends. You make changes but you make them ever so slowly. I try not to get mad at myself when the numbers don't work out. I inhale, exhale, repeat. I'm tired. I haven't slept through the night in I don't know how long. It makes me irritable and, honestly, a real joy to be around. Ask Tom.

Sometimes things go wrong and they go wrong in a bad, bad way. Grace was in the 300s all night Wednesday. I figured we just needed to crank the insulin a bit more.  But when she woke up she was still in the high 300s and it was climbing. I had a major "oh shit" moment and realized her pump wasn't working. I pulled her site and saw the tube that delivers her insulin (canula) was bent at a 90 degree angle.  Essentially no insulin got into her all night long. I knew to test for ketones (the nasty acid that builds up in your body if you have no insulin). In the past, we've had experience with mild ketones. But as soon as I dipped the stick in Grace's pee it turned hot pink. Another oh shit moment. It's extremely easy for kids (and adults) on the pump to get ketones.  It's also extremely dangerous.  Too much ketones leads to bad bad things that I won't think about it. CHOP trains you for this in their classes so I knew what to do.  Unfortunately, it's a lot of sitting and waiting to see if things are working. Grace was tired, her stomach hurt (if she started to vomit we'd be on our way to CHOP), and headachy. We sat and watched a movie and I hoped for the best. By noon, she was fine and back to school. Again, I inhaled, exhaled, repeated.

To bring Grace's sugar back in range, I had to stop the pump and give her a syringe shot. Her reaction to the shot confirmed for me why the pump is right for us. She sobbed, was angry, and adement she would not go back to shots. I feel the same way.  I like what the pump has to offer us despite all the work we're putting into it. It's a challenge-like a giant puzzle with multiple moving pieces and those pieces change every day. I've never been a fan of puzzles but I'm working on this one, talking to CHOP, other T1 parents, and reading as much as I can. I'm confident we'll get this. In the meantime, patience has to be the name of the game.

Inhale. Exhale. Repeat.

This was one busy week for us at CHOP. On Monday we had our visit with Grace's therapist and on Thursday we had an appointment with Dr. G. Both appointments went so well. I swear I'm sleeping much better.

On Monday, we continued discussing how we can best help Grace accept her diagnosis. Grace played with a social worker while Tom and I talked strategy. We struggle the most in two areas: Grace's grumpiness and cranky behavior when she has a high blood sugar and taking an insulin shot in a reasonable amount of time. When Grace's sugar runs high, she is very emotional and irritable. In the past, I've treated this as a strictly behavioral issue. Simply put, it's behavior I find unacceptable. When discussing this, our therapist suggested a different approach. If Grace wants to crawl into my arms and have me hold her, I should do it. If Grace needs me to drop everything I'm doing to give her the attention she is demanding, I should do it. Some behaviors though, are just unacceptable. Hitting, being mean, rudeness, nastiness-not to be tolerated. We should also be sure we are using these moments to help her figure out how she feels when she is high, so she can tell us.

The other strategy we discussed was how to make insulin go more smoothly. Grace had been creating increasingly complicated rituals to put off getting her insulin. She needed her blanket, something to squeeze, a dog, a cat, another cat, Luke to make a funny face. It was taking upwards of 10 minutes to get her settled for a shot. Of course prolonging the inevitable was making her more and more anxious and were caught in a vicious cycle. Our therapist suggested a sticker reward chart. If she sits down and takes a shot quickly, she gets a sticker for her chart. Insulin should be like flossing--a little uncomfortable but something we need to do. I was floored how quickly Grace took the system. I'm looking at a wall of stickers in my kitchen. For now, problem solved.

On Thursday we got great news at the doctors. Grace's A1C blood test was fantastic. The test monitors progress overs a 3-month period in how we are managing the diabetes. The doctor *hopes* for around a 7. We came in at 6.1. The doctor's smile was HUGE--he was positively giddy with that number. The only thing we need to do differently is deal with Grace's lows. Recently, Grace has had a lot of lows. Practically every afternoon and before bed she goes low. So we're going to adjust her long-last insulin (levemir) and see if that helps.

Grace told me she likes Dr. G because he's so nice to kids. I like Dr. G because he's so nice to kids and freakin' smart. He and his practice took us from an A1C test score of over 14 to a 6.1. He commented that we've reached the part where we are controlling the diabetes rather than it controlling us. I do feel we've made that transition and while all the bumps have not nearly gone away, we are settling into some sense of normalcy.