Nate the Great

I wrote some of this post back in April, but didn’t finish.  So here it is! Nathaniel has really been doing great.  Recently we let him try to say (sign) a prayer by himself and he did it!  It was so precious.  We have since called on him occasionally to pray.  He has been thankful […]

Being Different 2

I kind of go in cycles of wanting Nathaniel to do as many “normal” things as possible, and being just fine with his differences.  For a long time I really wanted him to eat all of his food while he is awake during the day.  And then sleep lying down in his crib both for […]

Busy Month 1

Just when things seemed to be slowing down (only a couple of dr appointments in October and a couple in November), December kept Nathaniel quite busy. It has now been 2 full years since his ear tubes were placed, and we have been expecting them to come out for the last 6 months.  At our […]

None, zero, zilch, nada

Right now Nathaniel does not eat anything by mouth.  In the past we have given him “tastes” of milk or baby food, but currently he gets everything via g-tube.  And when I say “tastes”, I mean up to 1 teaspoon a day.  So its not really eating, just trying to help him learn to swallow. […]

2 Year Old Nathaniel

The other day Nathaniel’s nurse said, “He’s being a 2 year old today!”  Here are some 2 year old pictures of Nathaniel. “Helping” with laundry. He loves sitting outside in this chair. Needs sunglasses because his eyes are so sensitive to the bright sun. Doing everything big kids do. Focusing with tongue out. And the […]


Nathaniel is not able to speak and we don’t ever hear his voice.  He is perhaps the best 2 year old to have at church!  He does sign “go” a lot and climbs around. Nathaniel has learned a lot of American Sign Language (ASL) signs.  Darryl and I were curious a couple weeks ago so […]

Nathaniel’s Progress II 1

From the time Nathaniel first got his hearing aids (May 2014), his left ear has had drainage at least 50% of the time.  Meaning it is wet and gooey and he can’t wear the hearing aid in that ear.  Because they think he actually has a different type of hearing loss in that ear, he […]

Nathaniel’s Progress

I’ll post about medical things another time.  I just wanted to write a little about regular things.  I love the stage Nathaniel is at right now.  Having fun and learning to communicate. This is Nathaniel painting with water in Grandma’s backyard.  To me, it is a big accomplishment because Nathaniel doesn’t like to touch water […]

Nathaniel’s Balance

A common characteristic of CHARGE Syndrome is compromised balance.  Something to do with the inner ear and vestibular something.  That’s one reason many CHARGErs don’t walk until later.  Nathaniel has done really well with walking, but it is obvious when I seem him next to another 2 year old, that his balance and agility is […]

Nathaniel on Vacation 1

Taking Nathaniel on any overnight trip is a task.  We have to bring his mist machine, oxygen concentrator, nebulizer, and pulse ox, along with his suction machine and feeding pump that we take with us just about everywhere.  Plus the chargers/plugs for all of those things, plus a case of pediasure, medications, daily medical supplies.  Oh, […]