Special Needs Parenting

Links to posts I've written about special needs parenting:
The Only One
11 Tips for Supporting Parents of Children with Feeding Issues
9 Tips for Moms of Special Needs Children
Sometimes...
So Much to Miss
You Don't Know How Strong You Are
Pros and Cons of G Tubes
A Few of My Favorite (Tubie!) Things


Other helpful links:
Pediatric Feeding Disorders/FTT/GERD/and Kiddos with Feeding Tubes
Feeding Raya: The Story of a Girl and Her Tube
Feeding Tube Awareness
Granulotion 
Mommies of Miracles
My Tubey Books


Little Dude's story in blog posts:
Little Dude's Birth Story
A Very Long Day
Little Dude-1 Month
I'm Back
Hanging in There, But Barely 
Prayers Needed
No Answers Yet
Little Dude-2 Months
Random Monday on a Wednesday
Little Dude-3 Months
Long Overdue Update on Little Dude
Little Dude-4 Months
August: The Easy Month
Little Dude-5 Months
Little Dude-6 Months
Hospital Stay #4...Can We Be Done Yet?
A Day in My Life
Little Dude-8 Months
Little Dude-9 Months
Little Dude-10 Months
Where Have I Been?
Little Dude-11 Months
Little Dude's Tube Feeding Story
Little Dude-14 Months


Little Dude's story:

Little Dude was born full-term and seemingly healthy at 7 pounds, but at 1 1/2 weeks old, he starting refusing to eat.  We went through dozens of tests and doctor appointments before he was hospitalized at 2 months old for failure to thrive.  By that time, he was developing an oral aversion since I had to constantly work with him to get him to eat.  We tried EVERYTHING.  Different formulas, nipples, bottles, medications, waiting until he was hungry, but he would NOT eat.  By the time he was hospitalized, he was only eating 7-9 ounces of formula in a 24 hour period and would only take that much if I constantly pushed him to eat.  I spent my days and nights with him in one arm and a bottle in the other hand.  He was a little over 8 pounds and developmentally like a newborn.  He spent his time either screaming or sleeping (and he barely slept) and was losing weight.  On the third day there, they put a Ng tube in to see if he was capable of gaining weight, and he did well with that.  However, he kept pulling the tube out no matter how well we taped it down and, since we knew that he was going to need a feeding tube for a while, we decided to go ahead with a G Tube placement.

After genetic testing, swallow studies, an MRI, EKGs, echos, a bronchoscopy, an endoscopy, x-rays, fluoroscopies, blood draws and many more tests, we finally found a diagnosis for Little Dude's medical problems.  His geneticist/primary care doctor clinically diagnosed him with a connective tissue disorder.  We are continuing genetic testing to determine which one he has, but at least we have an answer.  He's also starting to outgrow his tracheomalacia.  He has eczema, unofficially has asthma, gets sick easily, and has GERD, but overall, he is doing amazingly well given his rough start.   

Little Dude has made enormous strides developmentally and is only mildly delayed at this point with the expectation that he will be caught up with his peers by the time he's in preschool. Between 6-7 months of age, he finally started sleeping and stopped screaming nonstop.  On September 29, 2015, we removed his G Tube as he hadn't used it in 6 months, and it was constantly getting infected.  We haven't looked back since!  At nearly 2 years old, Little Dude is a happy, smiley little guy who charms the socks of off everyone he sees.