Adventures in KAndylaND

August: Our Family's Diaversary Month

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
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Katie’s New Diagnosis

by Christy
This is an overdue post.  We’ve now been in the Cincinnati area for over a year and we have been slowly getting the kids settled into their new team of doctors at Cincinnati Children’s.  After meeting with the endocrinologist, neurologist …
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New Tests, New Diagnoses, New Pills

by Christy
It’s been an absolutely crazy busy month which is why I haven’t posted anything in so long.  Andy graduated from Kindergarten on Friday and the last day of school was Monday.  We are trying to find a house to buy …
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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 …
Andy Autism DEND syndrome Developmental Delay developmental delays Developmentally Delayed Katie monogenic diabetes Neonatal Diabetes Potty training Potty Training and Autism Potty Training the Special Needs Child Rare Disease Special Needs Parenting

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. 
Andy Andy's Story ASD Autism babies with diabetes DEND syndrome Developmental Delay developmental delays Developmental Milestones Developmentally Delayed Glyburide Infant with Diabetes Katie monogenic diabetes Neonatal Diabetes Rare Disease research SPD Special Needs Parenting therapy

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 …
Andy ASD Autism babies with diabetes DEND syndrome Developmental Delay developmental delays Developmental Milestones Developmentally Delayed monogenic diabetes Neonatal Diabetes Rare Disease Special Needs Parenting

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. . .
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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

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.
Andy babies with diabetes DEND syndrome Developmental Delay developmental delays Developmental Milestones Developmentally Delayed Glyburide Katie medication monogenic diabetes Neonatal Diabetes Rare Disease Special Needs Parenting

Snow Tickles

by Christy
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.
Andy Andy's Story ASD Autism babies with diabetes DEND syndrome Developmental Delay developmental delays Developmental Milestones Developmentally Delayed monogenic diabetes Neonatal Diabetes Rare Disease SPD Special Needs Parenting

Parenthood Episode Rings True

by Christy
I think any parent of a child with a chronic illness or a misunderstood syndrome will understand the episode of Parenthood that aired tonight.  Adam’s son Max has Asperger’s and a man in a grocery store called Max a retard so Adam punches the guy.
ASD Autism DEND syndrome Developmental Delay developmental delays Developmentally Delayed monogenic diabetes Neonatal Diabetes Rare Disease research Special Needs Parenting

Moving (and other life events)

by Christy
So it’s been a few months since I’ve posted and a LOT has happened in those few months.  Andy became almost completely potty trained in August just before he began Kindergarten.  Katie celebrated her first birthday.  Both kids increased their …
Andy ASD Autism babies with diabetes DEND syndrome Developmental Delay developmental delays Developmental Milestones Developmentally Delayed Katie monogenic diabetes Moving with Special Needs Child Neonatal Diabetes Rare Disease Special Needs Parenting