11 Years With a Life Changing Diagnosis

Eleven years ago we were entering Brenner’s Children’s Hospital in North Carolina to try something relatively new. While Andy was not the first patient in the United States to try it, he was definitely in the inaugural class (we think one of the first 5 at least). For 17 months we had given him insulin shots and hooked him up to an insulin pump to keep him alive. We were prepared to spend a lifetime of checks by blood sugars 8-10 times a day, changing out insulin pumps every 3 days and counting carbs for every single morsel of food that went into his mouth.

When we were admitted to the hospital on that night so long ago, we had no idea what to expect. Our doctor was “cautiously optimistic” that this new treatment would work. But even knowing that it might “work”, we knew we were paving an entirely new path in the medical world. Diabetics, especially those with Type 1 didn’t just come off of insulin. We were, as my husband puts it, a freak show on the diabetic floor. While other patients were being admitted in DKA and being treated with insulin, we were starting with a pill in the hopes of stopping insulin. Being a teaching hospital, we were a virtual merry-go-round of student doctor groups. We recounted our story from the last two years of our life, confirming that there was no family history of this on either side. No, I didn’t have gestational diabetes. Yes, he was exclusively breastfed before the initial diagnosis. And on and on for an entire week.

In the hospital with Aunt Alicia

Now we probably check Andy’s blood sugar once every few months. His last A1c was 4.7% which translates to an average blood sugar (in US terms) of about 88 which is right in the middle of normal. He takes 67.5-70mg of glyburide a day, which is roughly 3.5 times the recommended maximum dose of an adult with Type 2 Diabetes.

We don’t know everything there is to know yet. We still deal with all of the co-morbid symptoms like developmental delays and seizures. Some of those issues have gotten better with time, therapy, and an ocean of patience (at which I’m admittedly not always very good). But if being a pioneer and paving the way for new families (and even his own sister) is our purpose, then we have gladly taken on that role. We will continue to search for new treatments that might make his life easier and help him to be a more functional person. He is such a happy person and is growing into a strong young man. I can’t wait to see what the next phase in his life will bring.

Andy this past Christmas with Santa