Hollywood & Halloween

Today we spent our first full day at Hollywood Studios.  We have a big crew...14 people total!  Our family of 6, plus Pop-Pop, Uncle Tim, Aunt Dawn, Daniel, Charlotte, and our friends the Moyers (fondly known as Girl Jamie, Boy Jamie, and Tori (Maura's BFF).  Phew!

We were all ready for meeting the Toy Story characters...

(ok...maybe one of us wasn't so ready !!)

Riley still enjoys the character greetings as much as he did when he was 4 years old!

Aidan and his cousin, Daniel looking pretty cool on Toy Story Mania

Tonight we had tickets for the Mickey's Not So Scary Halloween Party at Magic Kingdom.

The girls dressed up and we all went trick-or-treating through the park.  We got more candy than we could possibly need :)

During the Halloween Party many of the rides had almost no line...Aidan and his cousin, Daniel went on Space Mountain at least 3 times in a row, with no wait!

As we were trying to make our way to the other side of the park before the fireworks started, we somehow found ourselves smack dab in front of the castle with no place to go.  So we sat down and enjoyed a front row seat for the spectacular Halloween themed display...

We couldn't have planned that better if we tried!

Hello from the Happiest Place on Earth

We were up very early this morning to make it to the airport in time for our 6:35am flight to Florida.

By 11:00am we were checked in to our hotel and ready to start our Disney vacation!

We had dinner reservations for the Hoop Dee Doo Musical Revue.  What a blast that was for the kids and the adults!  We laughed our way through dinner...which consisted of endless buckets of fried chicken, yummy mashed potatoes & corn, and was followed by a huge portion of strawberry shortcake!

After dinner we took the ferry back to Magic Kingdom, because we just couldn't be so.very.close and not go in to experience a little bit of the magic!

The kids were keeping track of all the modes of transportation we had used in just one day:
car
plane
train (or tram...whatever that airport thingy is called!)
bus
ferry

We finally got back to the hotel around midnight....21 hours after waking up for the day.  Our first day was exhausting but exciting.

Audra, Maura and her BFF Tori

Audra loving her endless fried chicken...

T'was the Night Before...

DISNEY WORLD!!!!

T'was the night before Disney World
and all through the house,
Every child was smiling and laughing
so excited to see Mickey Mouse.

The suitcases were packed
and placed by the door with care,
In hopes that tomorrow
would soon be there.

The children were tucked
all snug in their beds,
While sweet dreams of Mickey
danced in their heads...

Hope

We feel honored and so.very.proud that Audra has been selected as the Hope Child for the Brittany's Hope Walk of Love 2014. 

This amazing organization has supported our family for so very long. 

Before we even saw Audra's face for the first time,
and through all of our preparations for Audra's adoption,
and even after bringing our beautiful girl home...
they have remained in contact with us often.

With encouraging words via emails and cards in the mail,
Brittany's Hope has always been there for our family!

We were blessed to be chosen to receive a Seeding Gift grant from Brittany's Hope to assist with the financial obligations of Audra's adoption.  And we are determined to continue to support their mission:

"to facilitate adoptions of special needs, older and sibling children by providing financial grants for special waiting children; to actively seek out healthy and happy families who can offer love and support to special needs children; to raise public awareness of the need for healthy homes for special needs, older and sibling children and to raise public awareness of the unique joys of parenting a special child."

Audra was featured in their fall 2013 newsletter:

Last September, we traveled to Elizabethtown, PA to participate in their Walk of Love. 

Me, with Audra and Maura

Along with Aunt Dawn, Uncle Tim, Charlotte and Daniel

This year we will walk once again,

to raise awareness,

to raise funds,

and to support an organization that made a difference in the life of our little girl,

and who strives to make a difference in the lives of thousands of orphans all over the world!

Please visit their website to learn more about this wonderful organization:

www.brittanyshope.org

To learn more about this event please visit:

www.walkoflove.org

And if you would like to join us in supporting their mission please visit Audra's fundraising page:

https://www.crowdrise.com/audrasvillage/fundraiser/shannonboyle

a long (but worth it) wait

This update will not be too thrilling, but because this blog is essentially a journal I want to document the details here so I don't forget.

Audra saw the Genetics team at the end of June, and they recommended further genetic testing for her due to her constellation of symptoms/diagnoses...developmental delay, failure to thrive, short stature, hearing loss, malabsorption/pancreatic insufficiency, kidney reflux and possible immunodeficiency.

The specific blood test they ordered is new & expensive, and we were recently notified that our insurance company denied coverage of this test. They consider this blood test to be experimental.  So, I guess they think it's better to not know than to possibly find an answer for our little medical mystery child.

Then, last week, we were contacted by the Genetics research study team at CHOP.  Audra has been approved to participate in a research study that involves the same exact genetic testing that our insurance company denied.  This is both exciting and disheartening.

Exciting because she will get the recommended testing for FREE!  (Actually, they pay her with a $25 gift card as a thank you for participating)

but...

Disheartening because the fact that she has been approved to participate in this study means that there is significant concern that she does in fact have some type of genetic disorder.  They wouldn't just approve anyone for this very expensive study.

But, of course, we enrolled her.

Knowing is better than not knowing.

And the information that we could receive from this study goes way beyond solving the medical mystery of her little self.

The test is called:  Exome Sequencing and Genome Sequencing.

Usually genetic testing is isolated to just one or two specific genes where the doctor believes the patient's genetic disorder is located.  This test, however, looks at thousands of genes, all at one time.

So, while this test might hopefully give us an answer for Audra's current medical issues...it could also give us so much more!

It will tell us if she is genetically predisposed to certain diseases (heart disease, cancer, and many others).  It will also tell us if she is a carrier of a familial genetic disease gene that she could pass on to her children, such as cystic fibrosis, blood disorders, etc.

And, like the "cherry on top"...they told us that the genetics lab at CHOP still has some of Audra's blood saved from previous testing, so she doesn't need to have any blood drawn for this study!

No pokes,
No charge,
No problem...sign us up!

The catch??....

It will be 9-12 months until we get the results.

And so we wait.

Mid-Autumn Festival

Mid-Autumn Festival is the second most important Chinese holiday (after Chinese New Year).  It falls on the 15th day of the eighth month of the lunar calendar, and always when the moon is at it's fullest.  The festival celebration includes: gathering of family and friends, giving thanks for the harvest and praying for longevity and a good future.  It is thought to be similar to the American holiday Thanksgiving. 

Mid-Autumn Festival traditions include moon gazing, eating mooncakes, burning incense and carrying lanterns or releasing floating sky lanterns.

We celebrated the festival with family and friends at our house last night.  We enjoyed dumplings, wontons, spring rolls and fried rice for dinner.  Then, after the sun set, we had a beautiful moon to gaze at.  

I ordered some mooncakes for everyone to try....

They were lotus seed paste with salted egg yolk ?!

Audra enjoyed her mooncake...

and she was the only one who ate the entire thing.

It's a bit of an acquired taste.

After dinner all the girls in lined up to watch their Daddy's release floating sky lanterns...

It was a beautiful night!

Next year Mid-Autumn Festival falls on Audra's birthday...

oh, what a party that will be!

Back to School

Audra went back to school last week...

another year of Pre-K for her.

On Monday morning, I got her dressed for school,

packed her lunch,

and helped her carry her gigantic backpack outside to wait for the bus.

We waited and waited...

...but no bus.  So, finally I called the school district's transportation department.

Turns out Wednesday was the first day of school, NOT Monday!

I'm usually pretty organized and good with schedules.

But I guess we all slip up every once and a while :)

So, inside we went to enjoy another two days of summer.

Wednesday morning we did it all again...

I got Audra dressed for school (in the same pretty polka dot dress!),

packed her lunch,

and helped her carry her gigantic backpack outside to wait for the bus.

This time her bus DID come!

When her "bus" (which is really a mini-van) arrived at our house,

she let me buckle her in and kiss her good-bye.

She didn't cry or get upset.

YEAH!!

Today was the first day of school for the other three...

Riley's first day of his last year of middle school (8th grade)

Aidan's first day of his last year of elementary school (5th grade)

Maura's first day of 1st grade

and her first time riding the bus to school!

This is also the very first time I have had two kids go to the same school!

It was a busy morning getting all the kids up and out the door to school on time.

Riley's bus comes to the house at 7:25

Aidan and Maura get picked up at the bus stop at 8:05

and Audra's bus comes to the house at 8:15

Now the house is silent and still.

This might be nice for a day or two...a week max!

But I think I'll get bored and lonely quick...

I've never had all the kids at school for a full day!

I'm off to get some cleaning and organizing done.

And maybe start a little packing because....

Only 18 days until our trip to Disney World to celebrate Audra's 7th birthday!!!