Adventures in KAndylaND

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 …
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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. 
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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

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!  …
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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

The Never Ending Hallway : Potty Training the 5 Year Old

by Christy
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 Andy's Story ASD Autism babies with diabetes DEND syndrome Developmental Delay developmental delays Developmental Milestones Developmentally Delayed monogenic diabetes Neonatal Diabetes Potty training Potty Training and Autism Potty Training the Special Needs Child Rare Disease SPD Special Needs Parenting therapy

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

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