Olivia has had her pump for almost three weeks now and while we have had some issues with it, I am already so mentally and emotionally far away from the shots that I don't think I can ever go back. It's as if we were, out of necessity and hardship, eating food that was half-spoiled. Day in and day out, we forced the stuff down until we got to a place where we hardly noticed that our food was rancid. And then one day...Fresh apples and oranges! Beautiful cuts of meat! Bowls of hot couscous! Brownies! And just like that, the thought, even the thought of eating that other becomes too horrible to bear.

OK, so I have some strong feelings about giving Olivia shots.

(Please. No offense at all intended to anyone who is on shots or giving their child shots. I am just so, so glad not to have to do it today. And I hope that we won't have to do it tomorrow.)

all systems go, people

This was Friday. Olivia and Sawyer have both been tight in the grip of a nasty sickness since, but O's numbers have been decent-ish and I feel like falling to the floor and weeping big tears of gratitude everytime I touch, look at, or speak of the pump.

So, guess what?

 

 

Olivia has started asking when she won't have to take insulin anymore. I tell her that people are working very hard for a cure and when they find that cure, she won't have to take her medicine. If she seems in the mood for more, I talk about the pump.

At any given time on any given day, I might call Olivia's name, only to be told, "I'm Hannah." Hannah is her alter-ego. Hannah is a mom or Hannah goes to school. Olivia asked me again today about not taking medicine and when I finished my answer, she said, "Well, I'm Hannah. And Hannah doesn't have to take insulin."

Amy Tenderich has a good post over at Diabetes Mine on the news of the FDA's recent, controversial study of the use of insulin pumps by teens. She points out some of the information that the FDA did NOT include and offers a link to one of the many recent studies which contradicts that of the FDA.

Marc recently requested a sample Omnipod in the mail. They sent us one which has the real inner workings, so the weight is the same, but rather than insert it with a needle, one can peel a backing off and put it on like a sticker. As part of his effort to get Olivia to let him put it on her, Marc has been showing her videos on YouTube of other children and their pumps.

This afternoon, she asked me to watch the video about Samantha with her.



Lost it. Completely. I was barely able to hold things together enough to make it through and take a break in the kitchen.

It's really important that we act enthusiastic when she meets other children who also have diabetes, children who have pumps, but it can be almost soul-crushing to hear your three-year-old say, "Mommy, she has diabetes...just like me!" as though it were the most exciting thing.

Also soul-crushing? The first two minutes of this video:



No parent should have to do these things to their child. No child should have to endure it.

There is no cure for diabetes. Yet.

We will not be raising money for the JDRF's Ride for the Cure this year, but we are walking in our local walk. If you would like to donate to Team O, please follow this link.

At O's last appointment with the endo team, we had our on-going discussion about where we are in terms of the pump. It was decided that we would take a loaner home for a week or so. Our diabetes educator has a stuffed animal with a special patch on its tummy for the infusion set. But we had another plan...

 

That's right...Shotsy wore the pump. And he was a trooper about it. Olivia was very interested in the pump and the tubing and putting it on the bear. We thought that it might make her feel more comfortable with the whole idea. And maybe it did.

 

But she drew up short when it came to allowing us to use the I-Port again. She steadfastly refused, even after Marc put one on. She did tend to Shotsy and his pump for a few days, but I eventually came upon everything lying on the floor where she had left it after ripping it out. All in all I'm glad we did it...maybe we are getting there.

I detest diabetes sometimes for being so damn unreasonable. What worked yesterday should work today and what works today should work tomorrow. A regimine will be effective for a couple of weeks, and then things just...change. I am always a bit slow to catch up. O has just been stuck in the 200s lately, which means extra shots. I am starting to question what I am doing. Should I not be letting her eat as many carbs as I do? I generally just try to feed her a healthy, well-rounded diet and adjust the insulin as needed, but she seems to have moved into the period of toddlerhood where she wants crackers more than she wants fruit or vegetables. I think what she really needs is a pump. Where do I begin?

At the beginning of the month, we spent a long weekend in Asheville, NC for the Ride for the Cure. After raising more than $4,800 for the JDRF, Marc rode 100 hard miles in the Smoky Mountains with 80 other folks. Marc's parents went with us; all five of us had a great time.

 

I had forgotten what a great little city Asheville is - sidewalk cafes, bookstores, a co-op - I stole away each day during Marc and Olivia's naps and just wandered around. Of course, we also had to visit the Biltmore and we had a nice dinner the night before the ride at a local tavern where they brew their own.

 

 

Olivia met several children who had pumps and exhibited real interest in the pump for the first time after playing with these kids and talking with me about how they no longer take daily shots. We have talked about this with her in the past, but now she is beginning to understand. She even started pointing pumps out to me when she saw them on people's belts.

It was so helpful for me and Marc to meet some folks in the community, as well, to talk with parents whose children were diagnosed around the same age as Olivia and who are now older. Everyone was very kind, very helpful and encouraging. I was so moved and impressed by many of the people who were not serious cyclists, but trained for and completed the 100 mile ride.

 

 

We met some members of Team Type 1 and have been reading up on their story since. Check out the link and read about how the team, comprised entirely of athletes with type 1, won the 3,052 mile Race Across America twice.

We are already making plans for next year and think that we (and by "we," I mean Marc) will probably do the Ride for the Cure in Montana.

 

Best of all is that Olivia's blood sugars were, for the most part, beautiful and have been since. In fact, she has been having the best six or seven weeks that she has had since she was diagnosed. I hope it holds.

This seems odd...

4:56pm blood glucose 147
8:25pm bg 135
10:55pm bg 140
2:22am bg 144

Is this odd? At first I was afraid something was wrong with the meter, but I suppose this is exactly what we are striving for and I have just never seen it quite like this before. This time period included a snack, dinner, insulin, exercise, and a bedtime snack. I know there were fluctuations; I guess we just happened to catch the numbers around the same point in their ups and downs.

I hate looking at a number and not knowing which direction she is headed, especially at night. Continuous Glucose Monitoring is a miracle and I look forward to the day, though I still don't know if O is ready to move beyond injections. We have not been using the iPorts, because she protested so much and I just haven't had the heart to override her. I can't help feeling that her reaction to a pump would be similar.