A Diabetes Blog to Stay Connected with Us

I'm going to use this blog to keep family, friends, and the occasional visitor up to date on how we are doing managing Grace's new diabetes diagnosis.

Friday, May 4, 2012

Just Keep Swimming

I had this profesor in college who was famous for raking students over the coals. He sensed weakness and pounced on it. If you had not seriously prepared for class, he would tear you apart. It was like sport to him. I loved it.

One day I was caught unprepared and the glee this man took in seeing me stammer was disturbing. He announced to the class, "Lawrence is frantically treading water in the deep Atlantic waters-don't any of you throw her a life jacket." I can laugh about it now. After years of therapy.

This "treading water feeling" is how I've felt lately with Grace. Life on the pump continues to be awesome for her. I know she has no regrets or questions about whether it was the right choice.  But this past week was completely awful.  Her numbers were all over the place and as much as I studied them, they were just not making sense. She's high, she's low, dear God she's really low. That was our week.

We had our check up with our favorite doctor yesterday and he got me back on course. He had pushed from day one to get Grace on a pump and he is so, so excited we made the move. He asked LOTS of questions about what we like and don't like. He's a really good listener. He totally sympathized with where we are in the process. I think Tom and I were obviously flustered while we delineated all our issues with pumping. While we talk, it's very hard to not get preoccupied with Grace to make sure she is ok. Grace is always curiously quiet in these appointments. Yesterday she was content to create an intricate doodle while we talked.  I encourage her to talk but for now I think it's important for her to find a way to deal with these long appointments filled with crazy medical talk.

A cool feature of the pump is the ability to upload all Grace's data to a web site that the doctor can then access.  We looked at the data and it was comforting to hear him say, "Oh wow, she is kind of all over the place." He walked us through how to read the data (less of a problem for Tom, more of a problem for me). Then he came up with a plan. We'll tackle one set of numbers at a time making very small changes as we go. But he also encouraged us to take control of the pump. He wants us to build confidence with our decisions and feel comfortable making adjustments--as long as we do it slowly and methodically. Once a week he wants us to upload Grace's data and he'll take a look.  He wants us to include what's going on with Grace. Has she been unusually active, unusually quiet, fighting off a bug, etc. We'll include our thoughts on what changes should be made and he'll review them. That giant breeze that overtook the Delaware Valley at 2pm yesterday? That was me-exhaling.

We also learned our doctor will be staying on for 2 more years. This was even more relief. Most patients see nurse practitioners.  In fact, I know of no other T1 kids at CHOP who see a doctor.  CHOP has a fellowship program that trains doctors to be pediatric endocrinologists. I knew in the back of my head that at some point the program must end and we'd lose our doctor. I feel extremely comfortable communicating my frustrations with him and I feel like, over the past almost year now, he has a good feel for how to communicate with me. I've said this before, but one of the major frustrations of diabetes is its unpredictability. To know we have some stability with our doctor is also a relief. I left CHOP relieved-relieved for stability and for the guidance CHOP continues to offer us. I always leave there feeling like we're not alone, like we can do this another three months. It sounds weird but I actually love the time I have with Grace after our appointment is finished. She babbles away in the backseat about music, school, life. It's extremely cool the way she wants to talk to me about whatever is on her mind. If diabetes is on her mind (which I don't think it is), she doesn't mention it. It's just a return to normalcy-back to our regularly scheduled program.

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