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 …

Closing the Gap: Is Gene Therapy Our Future?

There are two thoughts that ran through my mind when our doctor told us that our son had a rare genetic mutation: Which one of us gave it to him (or was it both of us)? – and Why can’t …
Day #5 of D-Blog Week: Awesomeness

Day #5 of D-Blog Week: Awesomeness

Awesome things – Friday 5/13:In February the #dsma blog carnival challenged us to write about the most awesome thing we’d done DESPITE diabetes.  Today let’s put a twist on that topic and focus on the good things diabetes has brought …

Hopes and Fears Pop Up in Dreams

I know that dreams can have a lot of meaning and sometimes they are a little mysterious and hard to understand.   Then at other times, what you dream is very straightforward and hits you in the face.  Last night I …

Health Activist Writer’s Month Challenge – Day 1

The people over at Wego Health have issued a challenge.  Blog every day for the month of April on your condition.  It can be difficult for us to sometimes come up with a topic, especially when things are going smoothly …

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. 

Cheers and Fears

As I walked out the door with Andy this morning, I hesitantly let go of his hand.  Just yesterday I was telling Dan how we had been practicing every morning with walking next to Mommy instead of holding my hand …

Crash Central

Like I’ve said in earlier posts, we seemed to be returning to normal.  Then we get too comfortable with that notion and diabetes likes to rear it’s ugly head once again.  Katie had a huge spike higher than I thinkI’ve ever seen. . .

The Conundrum and the Experiment

a cross-post from my other blog Having 2 children with a rare type of diabetes and a history of Type 2 diabetes in both mine and my husband’s family, you would think we would eat a very healthy diet.  Wrong!  …

Returning to “Normal”

We are finally done with the antibiotics and infections are all cleared up.  Blood sugars are starting to rise again so doses of glyburide are starting to slowly increase.  I know after all this time that I shouldn’t worry too much about lows, . . .