Adventures in KAndylaND

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, …
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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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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

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