Adventures in KAndylaND

August: Our Family's Diaversary Month

August: Our Family's Diaversary Month
For every parent, the birth of their child is a significant month. But for the parent of a child with a rare disease, or a significant diagnosis, the month of diagnosis is also a time that is forever remembered. For some, especially in the diabetes world, we call this our "Diaversary". August is always a hard month for us because both of our children were diagnosed with a rare form of diabetes that month. Neonatal Diabetes

11 Years With a Life Changing Diagnosis

Andy is a 12 year old with Neonatal Diabetes and DEND Syndrome.
Eleven years ago we were entering Brenner’s Children’s Hospital in North Carolina to become pioneers for a rare disease. While Andy was not the first patient in the United States to come off of insulin, he was definitely in the inaugural class (we think one of the first 5 at least). For 17 months, we kept him alive by… Continue reading

Closing the Gap: The First Two Weeks on Carbamazepine

We are now at the end of the second week on Andy’s new medicine, Carbamazepine (Tegratol), and so far, we have had no adverse side effects.  We started him on a small dose of 2.5 ml (50 mg) twice per … Continue reading

Andy’s Story: Part III : Insulin Injections

So after a long week in the hospital and 3 days of crash courses in how to check blood sugars, give shots, and count carbs, we were sent home with our baby boy.  How do you explain how hard it … Continue reading

Andy’s Story: Part II : The Hospital

It is late tonight and I have just come to the end of three very exciting days where I have seen great improvement in Andy’s behavior and communication.  But that won’t make sense if I don’t tell the rest of … Continue reading

Andy’s Story, Part I: Initial Diagnosis

After writing last night’s post and reflecting on the significance of Katie’s age today, I felt the need to write about some memories of Andy.  Today, Katie is 18 weeks and 1 day old.  This is the exact age that … Continue reading