Foto Friday vol. 28 - Pumpkin Patch

After school Thursday, we went to the pumpkin "patch." I use this loosely because it was actually one of our mall parking lots. The real pumpkin patch was not an option as a family because it's a real working farm and, thus, not accessible for Miss Gracie. The other issue, minor in comparison, but hard to believe given that it was nearly 80 degrees, was that it was very muddy everywhere from two days of rain.

Miss Gracie had no problem recognizing the ponies!

Preston alternated a joyful, "Yee Haw, Badger"
with an unsure, "Bubby get up!" throughout the ride.
Despite being incredibly light sensitive (thus, covering her left eye) and, as it turns out, allergic to the hay, Miss Gracie loved her ride on Buttons and proved that she is ready for hippotherapy!

As John chased Preston, I took the pic of Gracie and me to prove that I was actually at this outing!

Puddle Jumper

Following a tricycle ride around the neighborhoood Friday, Preston was delighted to find that the gardeners had left a small puddle in the driveway. Without hesitation, he proceeded to...

and

and was properly soaked through to his socks within minutes!
(from my cell phone)

Foto Friday vol. 27 - Dairy Assembly

Gracie's school had a Dairy Assembly on Thursday with a real dairy cow and calf as the stars. After all the other classes left, Gracie's class got up close and personal! At first, Miss Gracie was tentative, but eventually she was petting Jerry, the calf, on her own.

(With Gracie is her trusted aid, Betty Lou, and behind the camera is her teacher, Debbie. Thanks, Debbie, for the pictures!!!)


Jasmine the Cow smiling at Gracie!

Meeting Jerry the Calf

More with Jerry...

Guess what Gracie did today?

Today I picked Gracie up from school (she had a GI appointment this morning, so no bus ride) and I was greeted by her health aid (and Gracie, of course!) and her teacher, Debbie, who was excited to tell me this...

Gracie was about to work on the names of the kids in the class with her teacher. The printed names (without pictures) were on the table. When the school nurse walked into the classroom, Debbie talked with her for a moment, leaving Gracie to sit at the table with the names lying there in front of her. Little Miss thought no one was watching her - - which is, of course, when she does her best work!

As her teacher and the nurse watched in utter amazement, Gracie picked up Kaelyn's name and proceeded to sign her name sign. Debbie knew from all I've ever told her about Gracie that she shouldn't let on that she was watching and instead just let her continue. Next, she picked up Daniella's name and signed Daniella's name sign. She then picked up her own name and signed "Gracie." Finally, she picked up Alvero's name (he's the newest addition to the class) and signed an "A" near her face with some hesitancy, so Debbie reached over and corrected her positioning and then congratulated her on her very impressive work!

Can. You. Even. Believe. This?!
No pictures... just their printed names!
I am still amazed, proud and elated. And, I am not at all ashamed to admit that I squealed with glee in a decibel only the neighborhood dogs could hear as I jumped up and down at the news!
Truly Incredible!

Foto Friday vol. 26

Gracie's schedule is busy insanely hectic. Four days a week she has therapy of some type after school (OT, PT, Vital Stim) and then usually about once every two or three weeks, we are also squeezing in a doctor's appointment. The appointments themselves, plus the travel time, often have us arriving home near 6pm. While it is a complete drag that John works every single weekend, it is nice that on many of our therapy afternoons, he's now able to be with Preston and spare our little man being dragged to endless appointments with his sister.

Here's a peek at what it often looks like for the girls...



And the boys...

Preston loves hanging with his Daddy! The other day he came home to tell me they'd been watching planes take off and land at the airport. It was obvious he thought that Daddy had some special access to this magical place that I couldn't possibly know anything about. It was so cute!

They can also be found at the sports store (where Preston rides a two-wheeler with training wheels), the motorcycle store (where he gets to sit on motorcycles and make all those engine noises that boys seem to just know how to make), the field at the park (to play soccer) and the tennis courts (yep... he's already got a racquet of his own). They are plenty busy themselves!

The pics at VitalStim were taken a few weeks ago. Unfortunately, this therapy has been put on hold due to insurance issues. We are in the midst of trying to iron it all out... er... appeal the denials that are forthcoming for the first four sessions in the hopes that we can restart soon. We have a PPO (in addition to her state insurances), so we don't have to obtain a prior authorization. Initially we were told that her sessions would be unlimited based on medical necessity (which there's plenty of documentation from ENT, Pulmonology and GI indicating the necessity), but it turns out that Electric Stim of any kind is considered "investigational" or "experimental" and will not be covered. (Interject whatever expletive you choose... I've thought it - - and maybe have even muttered it under my breath - - while dealing with this!)

Gracie loves this therapy. She'd get so excited when I'd tell her where we were going (we call it "taste & swallow work") and she's more compliant than most kids her therapists have worked with. She's had audible swallows several times throughout the sessions and is incredibly motivated. This makes us all hopeful... and makes the current situation all the more frustrating. We've waited so long for this opportunit - - it's her last hope - - and I will fight tooth and nail get it covered somehow.

And finally, for your viewing pleasure...
This was taken the weekend that Gracie started pushing herself up into a "W" sit. She corrects her legs - - then gets down. The next step is to get her to sit for a bit... she just prefers being horizontal unless given a little support. The good news is she is consistently getting herself into a sit at home now!

Gracie's School Projects - September

Since they can't hang on the fridge or wall forever... and since I can't store every single thing in a box in the attic...

Gracie's projects that were sent home with her at the end of September

About the apple (the water bottle stuffed with tissue paper):
Miss Gracie is notorious for wanting to (and only) taking things out of containers. She rarely (if ever) puts things in - - especially upon request. I was told by her teacher and her aid that she stuffed away when making the apple!

Cool Rider

Today, Preston rode his tricycle around the neighborhood - - total distance was 3/4 of a mile. He wore the helmet for another 30 minutes or so while he played with other toys... because he knows how cool it is to wear a helmet!
(He points out people who are riding their bikes without helmets and says, "Naughty... no helmet!")

In other news, Miss Gracie had her best walking session at therapy today! Some days she doesn't want to walk at all. Today was not one of those days.
She controlled turns, got stuck and un-stuck and traveled her longest distance to date. She got to make the decisions about where she wanted to walk and I know that sense of freedom and control only fueled her strength today.

It was a good day.

Creative Control

In case you were wondering...
There is such a thing as too much creative control!


I am still cleaning the cornstarch out of her chair base!
I am still finding little bits that were tracked into the house, even after vacuuming!
The lawn is still white from where I hosed down the table and Preston!
But they sure had fun!



Gracie didn't have school Friday, Preston had been couped up in the house for ten straight days with a nasty bronchial and sinus ick (one that earned him his first ER visit on the 18th) and we no longer have a nurse on Friday afternoons (that was our only day). Needless to say, I had my work cut out to keep my little campers happy.

Our day started with breakfast, breathing treatments and while Gracie and I played "beauty parlor," Preston got to watch Max and Ruby while eating the chocolate chip cookie he uses to "chase" his antibiotic!



After all this, we headed outside for the out-of-control cornstarch and water session. Next, were baths... obviously!

Then it was time for a bit of PT and school work. (She refused to get dressed again - - no surprise there!) Preston was confined to the other side of the table because he constantly tries to take over for her. I guess a perk of her not hearing is that she doesn't know he's screaming the letter names at her!





Incidentally, she was incredibly obsessive about leaving the house each day over the weekend. By Sunday morning, she was so confused (no matter how I tried to explain) and her clock was so out of whack that at 5am, she was at our front door signing "school" and "get dressed" and kicking at the door with her heels. As much as I try, I am not nearly as much fun as real school... and I am glad she feels that way!

This morning she was up at 2am... it wasn't pretty. Around 7:00, I told her that she had school today. She flapped and wiggled her arms and legs in excitement and signed "school" and "yes."
Thank goodness for Monday morning!

More on perspective

What do you see?


Grey, windy skies?
An approaching storm?
A reason to feel gloomy?

Or... do you see this?


The summer's last sunset as viewed from our backyard.
The gentle breeze caressing the palm tree as it bids the day farewell.
A beautiful array of color and light dancing in the wispy clouds.

It's all about perspective.

Not everything that counts can be counted,
and not everything that can be counted counts.
- Albert Einstein

Perspective

"It's all relative to your own experiences," I often tell my friends and family after they've said, "I don't know how you do it." Usually this is said in reference to the frequent curve balls life throws at our daughter and us. I constantly remind them that they'd take the same steps if in similar shoes. Sometimes they'll qualify statements about their own sleepless night because they know how sleep deprived I've been for the better part of six years. I am always telling them not to do that... of course they're tired if they're used to getting more sleep.
It's all relative - - experiences create your perspective. Learning about the experiences of others can change your perspective - - not necessarily because another's situation is more difficult or dire, but so many times because of the way in which others so gracefully and positively handle such situations.

Several months ago, Hannah (my friend and sister on this journey), wrote a poignant post on Perspective. I encourage anyone reading this post to click the link and read it (or re-read it if you've previously had the pleasure). It's the kind of post that speaks to my very core - - as do many of hers. I revisited it today because in the last handful of days, several of my friends have emailed, texted or called to say that after catching up on our blog, they've once again been able to take a step back from their own chaos and what they think is currently a big deal in their lives and re-group. They kindly say that our situation - - Gracie's life and how we function as a family in spite of all she endures - - gives them perspective on their own.

Perhaps "perspective" is one of the reasons so many of us blog. We share, we glean, we learn, we grow - - our perspectives shift as we read about and share in the lives of others. In the same way that my friends view our lives, I gain new perspective each day by following the lives of the Nelson Family. They are unmet friends in CHARGE and their daughter, Moriah (who has had a place in our blog sidebar for quite some time now), has been in the hospital for ten months. What the three of them have been through during this time is unfathomable. Yet, through it all, they've shown unwavering faith and have handled themselves with the utmost grace. They are amazing people... amazing parents... and they have a beautiful daughter who is such a sweetheart and clearly a fighter.

While we've weathered a lot with Gracie, what Moriah and her parents have endured is unimaginable, even to us. Through their experiences (that they so openly and honestly share with the blogger world), they've taught us and continue to teach us so much about courage, faith, love, what matters and what doesn't. They give us and teach us perspective daily.

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * *
Moriah's medical issues continue to stump the doctors and her condition has taken yet another downturn. Whether you pray, send positive thoughts or meditate... please direct some of this energy to the Nelson family.