CHOP Visit

Yesterday we had our first follow-up visit with the Diabetes Center at CHOP. I was anxious to hear how we were doing and to get some news on how well (or not) we were managing Grace's diabetes. I noticed on the way to CHOP that Grace was quiet--like super quiet. At one point I looked in the rear-view mirror and noticed her just staring out the window with such a sad face. It broke my heart. It never occurred to me that she wouldn't want to go but her face said it all.

Returning to CHOP brought back a lot of emotions for me as well. Being surrounded by sick children is inescapable. Children in wheelchairs, crying babies, kids with bald heads-parents putting on their brave face- it takes a lot out of you emotionally. I noticed Grace taking it in as well so I just gave her some gentle hand squeezes. CHOP is both everywhere you want to be and nowhere you want to be.

Our first appointment with with the nutritionist. This went really well. If there's anything I can do well, it's nutrition and I know we rock this portion of diabetes management. She loved to hear that Grace can count carbs, can even guess her insulin dose--white flour is like satan in our house. Where we need to make changes is *when* we give insulin. We "post-dose" Grace. Grace eats a meal, we count how many carbs she ate, and give her insulin. I like post-dosing because it allows Grace the freedom to go back for more. The problem with post-dosing is the second Grace begins to eat, her sugar begins to climb. Grace also has a tendency to take her time while eating, run after the dog, running after the cat, bust a move, yell at her brother. . . Short of tying her to her chair, and screaming "My God your blood sugar is rising child, eat, eat!", we had to change course. So now we will be "pre-dosing." We'll make a plate for Grace, give her her insulin and no going back for seconds. This should allow us better control over her blood sugar. She's also put weight back on though has room to gain even more. Ice cream for dessert!

One hour later we met with our social worker. This brought our momentary high right back down. We've all had some concerns that Grace's stay at CHOP and her new diagnosis has left her sad--very, very sad. She frequently wakes up in the middle of the night, refuses to talk about her hospital stay, and dodges questions from me about how she's feeling. I frequently find her in the office coloring like a mad woman, just wanting to be left alone. The social worker tried to engage Grace who had been pretty happy and chatty but Grace just rolled into a ball on Tom's lap and buried her head in his chest. Some behaviors that we've seen like irritability, waking at night, and even physical symptoms like headaches are a sign that Grace needs to talk to someone. We're working on getting that set up.

One hour after that we met with our diabetes doctor. CHOP has a reputation for having brilliant doctors but not necessarily the most kid-friendly doctors. This has certainly been our experience with the allergists. Our new doc, though, was perhaps the friendliest doctor I've ever met. He immediately engaged Grace, used gentle touches, lots of "sweeties," smiles, nodding--absolutely made sure she was part of the conversation. Our biggest problem right now is the injections. She cries and sobs and it's just terrible. Hurting your kid multiple times a day leaves you broken. I have a rep for being the meanest mom in the world but honestly, making your kid sob upwards of 4x a day is just not in my mean mommy repertoire.

The doctor more than understood and gave us a few tips on how to improve on our technique. One thing he really pushed was introducing new injection sites. Currently we use arms and legs. He wants us to move into the belly and back. Grace HATED the idea but we remained open to talking about it. The problem with using the same sites over and over is the build up of scar tissue which then makes it hard for the body to absorb the insulin.

The doctor was pleased with her numbers over the past month and we're going to work on getting it in an even tighter range. He acknowledged how hard it is for us as parents and just said all the right things. He reassured us that his 92 year-old grandma has lived with diabetes all her life. He felt confident that we're moving from the phase of diabetes controlling us, to us controlling diabetes.

So this is how much of a champ Grace is. We got home at dinnertime and she immediately said let's do the insulin before dinner. I was shocked. Then she said, let's do a tummy shot. I was double shocked. Grace's capacity for managing this damn thing continues to amaze me. And while the tummy shot did not go well-awful, terrible, no good--she wanted to try again this morning and went much, much better. Back again for another visit in 2 months.