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
Andy is a 12 year old with Neonatal Diabetes and DEND Syndrome.

11 Years With a Life Changing Diagnosis

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…

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 …

Developmental Ups and Downs

We were dealt a blow yesterday.  Katie is behind.  When Andy was on insulin so many years ago, we knew he was behind.  He wasn’t doing anything he should be doing right on track.  As a parent, you always want the best for your child, but you also instinctively “know” when something is wrong. 

Snow Tickles

As adults, we have all probably experienced snow falling at one time or another in our lives.  But I never gave much thought to all of the sensations that go along with experiencing snow for the first time.  That all changed today when Andy and I stood waiting for the bus.

The Never Ending Hallway : Potty Training the 5 Year Old

Warning:  There may be graphic details in this post.  Read at your own risk. It’s been a while since I’ve posted and there is good reason.  Our lives have been really crazy in the last few months.  Andy graduated preschool …

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 …

The Dilemma of ER Visits

One of the worst parts of having a child with a rare disease is the dilemma of having to take that child to a new doctor when there is an emergency.  Andy fell off a chair on Friday night and …

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 resthis story . . .

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 Andy was rushed to the Emergency Room at LeBohneur Children’s Hospital in Memphis, Tennessee.