Adventures in KAndylaND
August: Our Family's Diaversary Month
by Christy Vacchio
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
by Christy Vacchio
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
by Christy
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 …
Towers of Pillows
by Christy
Anybody who has a child on the spectrum or with SPD probably took one peak at that title and shook their head in understanding. “Yep, my kid does that too” you’re saying. Sometimes I look at Andy and just think, …
I Can Do It Myself!
by Christy
As Katie has grown up we have had both moments of clarity where we are absolutely sure she is displaying behavior that is typical for her age and moments if confusion where we are just not sure what’s normal. This …
Hopes and Fears Pop Up in Dreams
by Christy
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 …
Developmental Ups and Downs
by Christy
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
by Christy
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
by Christy
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
by Christy
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! …
Andy
babies with diabetes
baby on insulin pump
DEND syndrome
Developmental Delay
developmental delays
Developmentally Delayed
Gluten/Casein Free
Glyburide
Healthy Eating
Infant on Insulin Pump
Infant with Diabetes
Katie
medication
monogenic diabetes
Neonatal Diabetes
Rare Disease
Special Needs Parenting
Returning to “Normal”
by Christy
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, . . .
When Diabetes Doesn’t Make Sense
by Christy
Well, I have to say, after 4 plus years of dealing with glyburide, I thought I was beginning to understand how my kids’ bodies work. I didn’t think anything could catch me off guard. However, Diabetes in general does things to a body that even doctors still can’t explain.
-
Previous
- Page 1 of 2
- Next
