Foto Friday vol. 30 - Tanaka Farms

On Tuesday, after we dropped Miss Gracie at school, John and I took Preston to Tanaka Farms - - a working farm where pumpkins (and many other things) grow from the vine rather than stacked at the mall parking lot! (Those types are super fun for the kids, too, but we wanted to show Preston that not every other parking lot in So Cal "grows" pumpkins and bounce houses!) While we wanted to take Gracie to join us, the reality is, this type of outing is not something she'd enjoy all that much. Preston, on the otherhand, loved it!

We took a tractor-pulled wagon ride.




We went to the petting zoo and saw goats, sheep and llamas.

We were quite pensive on the wagon ride back through the farm...

We went through the corn maze, picked our own vegetables (and used the onions in our dinner that night!) and picked one more pumpkin (for Sophie)!

Foto Friday vol. 29 - Meeting my true sister

"A true sister is a friend who listens with her heart."

I'm not sure who said this - - it's a quote I've known for a long time. Knowing the source, though, is not required to comprehend the meaning. Last Friday, Gracie, Preston and I had the privilege of meeting (in person) my true sister, Hannah, and her sweet Vivian.

A year and a half ago (actually to the day, I just realized), Hannah and I met through our blogs because of our daughters' shared diagnosis. We connected through our words instantly and, since then, Hannah has been a steadfast supporter, a shoulder to cry on, someone to celebrate with, laugh with, vent to and dish about favorite shows with. I learn so much from her... about life, motherhood, optimisim, advocacy, love, friendship. Our relationship started because of our amazing daughters, but it goes so much deeper than that commonality. I cannot imagine my life, this journey with my family, without her (and her family).

Hannah listens to my heart with her own... she is my true sister.

There were so many joyful moments in those few hours we spent together. From the first time we hugged through tear-filled eyes, to seeing Miss Gracie scoot toward Hannah and snuggle up, to holding Vivian at her request (be still my heart!) and hearing her delicious chatter as she read books in Preston's room, to seeing Preston run to Hannah with open arms because he, too, felt like he already knew Hannah and Vivian, to watching our kids share a meal (or tastes, in Miss Gracie's case!), to the many started, yet all unfinished, conversations between Hannah and me, to the interactions between our two year-olds that left all four of us rolling in laughter. It's impossible to find the words to describe it all. My heart is so full and my soul well-fed with memories of that day.

Here are a few pictures that captured some of the unforgettable moments last Friday. Both of us were so caught up in the moment initially that we forgot to get out our cameras. Thankfully, Hannah was better about it than I! Unfortunately, though, Miss Gracie was fast asleep (sadly, she ended up having a pretty rough weekend) by the time we started taking pictures, so we will have to get some with all three kiddos next visit... and there will be many more!




Though I only took a few pictures the whole afternoon, I did manage to catch a few seconds of Vivian and Preston together. The lighting is terrible because of the glare outside, but the content is gloriously joyful!

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!