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
Meeting with the Experts
by Christy
Last week we had the advantage of traveling to Chicago to the second North American conference on Monogenic Diabetes. While there we had the privilege of meeting with Dr. Hattersley from the UK. He was very interested in our story …
Going Up and New Families
by Christy
Finally after nearly 3 months of dealing with lows, both kids are trending up in their blood sugars. Noses are not visibly running any more on a daily basis and all stomach bug issues are gone. Yesterday Andy had a …
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.
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.
6 Things About Diabetes – The Neonatal Side
by Christy
November 9, 2010 is the 6th annual D-Blog Day as created by a fellow diabetes blogger, Gina Capone. This year is my first year participating and she has asked us to tell 6 things about diabetes we want others to …
The Dilemma of ER Visits
by Christy
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 …
Katie’s weight
by Christy
I know for most parents, and mothers especially, the months of watching the scale move up while they’re pregnant is replaced by watching the scale move up when their baby is born. Due to the recommendations from the American Pediatric …
Highs and Lows with New Medicine
by Christy Vacchio
Katie was diagnosed with Neonatal Diabetes at 10 days old and started on Glyburide that very day. While we had a lot of experience with this rare disease with Andy, dealing with a newborn with diabetes was a different skill set altogether. . .
