Graduation Day: CHEW U !

                Hall of Fame!

Gracie is one of the Champions of Chewing at Hershey Feeding!

This is the tiny, windowless room that we spent the last 4 weeks in while Gracie was learning to chew at Hershey Feeding Clinic. Some of those days were torturous! But oh what a payoff!!

The photo above is of her eating a Dunkin Donuts hash brown! Her therapist, Whitney, calls her Amazing!(which she is, of course, being Amazing Grace!)

The list of what she can eat has become LONG!:

Goldfish 

Ritz crackers

Chucks of cheese

That's just the start! All the major kid food groups: 

Chicken nuggets 

Mac n cheese

PIZZA

GRILLED CHEESE

PB&J

HOT DOGS

French fries

AND MORE:

Sausage

Pancakes

Waffles

French toast

Donuts

Tater tots 

Cupcakes 

Banana 

Cantalope 

Grapes

Peach

Mandarin oranges

Meatloaf

Green beans 

Fish sticks!!

Many thanks to Dr Keith Williams and his staff, especially Whitney, without whom this could not have happened!!

We are so proud of her!

                 HALL OF FAME

              (Another song by the Script)

  

Yeah, you can be the greatest

You can be the best

You can be the King Kong banging on your chest

You can beat the world

You can beat the war

You can talk to God, go banging on his door

You can throw your hands up

You can beat the clock (yeah)

You can move a mountain

You can break rocks

You can be a master

Don't wait for luck

Dedicate yourself and you gon' find yourself

Standing in the hall of fame (yeah)

And the world's gonna know your name (yeah)

'Cause you burn with the brightest flame (yeah)

And the world's gonna know your name (yeah)

And you'll be on the walls of the hall of fame

Superhero

The Script wrote a song called "Superhero".

The chorus goes:

When you've been fighting for it all your life

You've been struggling to make things

Right

That's how a superhero learns to fly.

Gracie's been struggling to make things right at feeding therapy. 

Last Wednesday they changed the protocol on her to try to get her to use her tongue to put the food onto her teeth  and then bite down and crunch, first just one time and then increasing the bites. 

Sounds simple, right? Wrong. She struggled half the day Wednesday and ALL DAY Thursday to take just one bite. She had a half hour session with the clinic's director, Dr Keith Williams. She tried to do what he wanted- she let him put her fingers in her mouth- very invasive stuff. Never protested- just kept going back to her seat. Finally, in the last session she knocked it out of the ballpark!!

All day I was in agony. I watched her try so hard- unable to do what they wanted. I felt wretched and stuck- I can only imagine how SHE felt. It's horrible watching your child struggle- but she didn't let it get to her.

It's going to be at least another two weeks here at feeding . 

Dr Williams says to struggling parents: think about how many times a typical person has chewed from ages 2-7- You probably can't count them. Up to today Grace has had 79 chewing sessions. 

79.

So forget Iron Man and Captain Marvel-- Gracie is my superhero. 7 years old, wicked smart, nonverbal but she can solve problems and find different ways to communicate and spend weeks patiently learning to do something ALL of US TAKE FOR GRANTED.

That's how my superhero learns 

To fly.

Anger

 

This was me last night.

Gracie had a rough day at feeding therapy. 

We had no AC upstairs and the electrician was supposed to come at 4:30. He didn't come till 6:30. Then I had to clear the attic way( which of All Stupid Things is in our spare room closet???????) and I was specifically told  I WOULD NOT have to do this by a certain party who shall remain unnamed)

All these fun things always happen when that certain person is out of town FOR THE WEEK! Leaving me alone with the child all day and all night!!

I told the repairman what that other person told me to tell him about the air conditioners condition- he looked at me (like they all do) like I was stupid. Then he said "well I will Have To go into the attic ANYWAY!!!!" 

Ok so- he goes up and does his thing and I have to clean out the closet and GUESS WHAT?!? It was low on freon as My husband said it was!!!!!!!!!!!!!!!!!!!!! 

Then as we were talking about how cold it felt downstairs, he makes the comment-----wait for it---------

"You know, cold air falls."

😑😑

Then after he leaves, I put Grace to bed.

She goes up willingly but then jumps out and goes onto her swing. And I'm like oh ok you want to swing a while. She cuddles cutely with her frog then tells me to go! So I stupidly think ok she will swing a little then crawl in bed. 

I go downstairs and break open the EPOOs (emergency purposes only Oreos) and not 10 minutes later I hear what sounds like a heavy body being dragged across the floor upstairs. So I run up the stairs! You must understand - there are only 2 things in her room that haven't been nailed down or put away for safety issues--the carpet and her dresser. 

Well neither of those were where they were supposed to be. So.... 

That's it- Anger took over the console in my brain and I exploded- I yelled so loud and so much I hurt my throat.

I think I scared her too. She started to yell at me then thought better of it and put her puppy over her head. Then...

 Sadness--

Then I start thinking how bad a parent I am. She can't control this. She's not getting the physical stimulation she needs because of being at feeding therapy all day so she has to get it somewhere. 

How do we as parents get through the day? How do we pull back from the brink of despair or ANGER day after day.

I guess I just answered my own question with the picture below. I guess for all the anger, fear, disgust and sadness that goes with being a parent, the JOY outweighs the rest. 

Maybe Joy will come tomorrow. 

I hope so.

Hershey Feeding Clinic

Today was the start of week 2 at the Hershey Feeding Clinic. Gracie has been doing really well. As I go to write this and say she really is behaving well, she tossed a plate on the floor- so no more on that subject. 

Each day consists of 10 10-minute chewing sessions, followed by 20 minutes of down time where we try to do some work or get some energy out. 

There is a "lounge" area where we can chill but there are no windows and no places nearby for physical activity. 

It's a five day work week for us with 3 hours commute time. I chose to commute rather than stay at Ronald McDonald house nearby because Grace can be a flight risk. 

So while the other kids enjoy their summer, Grace gets to work. Doesn't seem fair. But she will get through it. Today she is chewing pieces of CHOCOLATE OREO COOKIES! Woot woot!