All about Audra

It's been a little while since I've posted.  We've been busy living life!  Here are some recent photos to prove:

 My beautiful girl!

 Lunch at Five Guys...a step up from McDonalds

and for a little variety!

Wish all these burgers were actually putting some weight on her!

 

 Wearing mommy's glasses

 Putting on make up like mommy

 Loving Philly soft pretzels :)

Audra likes:
Having her hair done
Wearing hair bows
Folding or rolling paper...especially newspaper
Imitating our gestures...it's hysterical!
Looking at pictures...especially pictures of herself :)
Looking at herself in the mirror
Going down the slide
Taking her medicine (even in her sleep)
Peanut butter...by the spoonful
Eating, in general...but especially ice cream
Scratching daddy's back
Giving high-five's
Having daddy kiss the back of each of her hands like she's royalty

Audra dislikes:
Brushing her teeth
Baths (and getting wet in general)
Swings
Pizza (the only food she has ever pushed away)
When someone takes a bite of HER food
Using a fork
Walking barefoot in grass
Animals, especially dogs
Characters (people in costume)
When mama grabs her keys and purse...she knows it means I am going somewhere

Words she knows in sign language:
More
Please
Thank you
Eat
Potty
All done
Stop

Words she can say:
Mama
Baba (daddy)
Pop-Pop
Bye bye
Ball
Stop
Potty
Bubble
"Woo-woo" (for woof-woof when she sees a dog)

She is starting to learn the names of body parts and colors.  She really is so smart, considering she has only been hearing the English language for 12 weeks  (did I just type that?!...tomorrow will be twelve weeks that she has been with us!!)  She can follow many commands with no gestures from us at all...so she understands most of what we say to her:
put on your shoes
get dressed
time to eat, set the table
put that in the trash
pick up the toy
let's go outside
time for a bath
brush your teeth
it's bedtime

She still speaks to us in Cantonese all day long.  Lucky for us, she doesn't seem to be upset by the fact that we have no idea what she is saying to us.  I keep taking video clips of her chattering, I don't ever want to forget the adorable sound of her talking in Cantonese.  Someday it will be gone, and I will miss it. 

It is still very difficult for her to settle down and fall asleep.  She does not like to be touched when she is trying to fall asleep, so no cuddling.  (Although, she does love to cuddle, snuggle and be held during the day)  She will roll all around for a long time until she finally gives in to her exhaustion.  She seems to need the room completely dark and silent, she will fall asleep much faster that way.  But the long summer days are not helping since it is still light outside until at least 8:30pm...which means her long bedtime routine can't start before then. 

As for a medical update: 
Last week Audra's bloodwork showed normal inflammatory markers (**yeah**) for the first time in two months!  This is very good news :)  She also had another ultrasound which showed no change in the abscesses from two weeks prior.  So they are still there, but they are small.  So, because they are small and her bloodwork was normal the Infectious Disease doctor said she could stop the antibiotics.  Secretly, I was kinda hoping we could just keep her on the antibiotics until she is, like, 18 years old...since she has been feeling so good while on them.  But, obviously that is not an option, so now we will wait and see how she does off them, hoping that the abscesses will eventually go away on their own over time.  We were told that ANY fever she has needs to be evaluated by her pediatrician right away, and she will need to have a urine culture and bloodwork done. 

So for now...just loving life antibiotic free!  Which her belly really appreciates :)

firsts...and doubles



Wow...we've been home for 2 months! 

 

Okay, maybe we haven't been at HOME the whole 2 months...but we came home from China 2 months ago today!  And we all know what a crazy 2 months it has been...but it's also been filled with lots of joy, wonder and amazement as we have watched Audra discover this new world of hers. 

 

Here are just of few of my *favorite* firsts that Audra has experienced since coming HOME!

 

First time at the park

(with Maura and Charlotte, of course!)

 

She loved the slide :)

 

 

 

She did NOT like the swing. 

She seemed terrified and held on for dear life. 

I don't think she's done this before.

I took her right out after only one (little) push.

 

First trip to Dairy Queen...and it won't be the last! 

 

First attempt at feeding the ducks...

who weren't interested in being fed?!
That has NEVER happened to us before.

 

Special time with Uncle Tim

 

 "I'm not letting go of my ice cream cone...never, ever!"

 

1st trip to Target...a MUST go place for every girl! 

At first I don't think she had any idea what this huge building with aisles and aisles of things was all about.  But as soon as we got to the little girls dresses she figured out pretty quickly how to put things into the cart!

1st trip to the grocery store:

WOW, was she in awe at the sight of so much food in one place at one time.

The dinner table and the refrigerator used to be her favorite places of all time...

but I think she has a new favorite!  

 Right away she spotted the bananas and just HAD to get her hands on some!

She held them the entire time we were in the store, AND the whole car ride home.

 She couldn't resist the urge to have one (or two) as soon as we got home.

Actually, I am surprised that she didn't help herself during the ride home!

 

 

This week Audra achieved something great....she broke double digits for her weight in kilograms!!!  At her weight check on Wednesday she weighed 10 kilograms exactly.  Good-bye single digits weights :)  10 kilograms converts to 22 pounds (double 2's to go along with the "double" theme of the week!)  Audra came home from China weighing just over 10 kilograms, so now she has finally gained back the weight she lost when she was sick. 

 

And in keeping with the double digit trend...her last hemoglobin check was 10.something!  All good numbers this week :)

 

On Monday she will have bloodwork to check her inflammatory marker levels and another ultrasound to see if the abscesses have *hopefully* gone away.  Tuesday she has an appointment with the Infectious Disease doctor at CHOP who will tell us the plan...which I am hoping will be that she can stop taking the antibiotics.  

 

 

the Olympian, the All-Star and the Ballerina

Our Gold Medal Olympian

Riley has been participating in our local chapter of the Special Olympics since he was six years old.  He's done bowling, track & field, and equestrian.  Every season there is a local qualifying event for each particular sport.  Twice Riley has done so well at the local event that he qualified to participate in the Pennsylvania Special Olympics State Games at Penn State University!  The first time was two years ago, and the second time was just two weeks ago.  Both times he qualified in equestrian.  Attending the State Games has been a HUGE challenge but an even greater accomplishment for Riley!  All Special Olympics athletes are required to sleep in the dorms with their coaches and teammates (and we stayed at a nearby hotel).  These two trips to Penn State have been the first and only times that Riley has ever been out of the direct supervision of us, our extended family or his 1:1 aide at school.  And he has done so well...surpassing our expectations.  We are so proud of him.  Even just a few years ago I would have never imagined that he would try something like this AND be so successful at it!  This time he participated in three events and received the gold medal in each of his events!  He was the only one from his team of 20 riders to receive the gold medal in all of their events.  And while that in and of itself is exciting and thrilling, seeing all that he has accomplished socially and emotionally means so much more.
The Special Olympics organization is simply amazing....it has helped my boy do amazing things...things that I at one time never imagined were possible.
I am one PROUD mama of my gold medal champion!

 

 

Our All-Star Slugger
Aidan was chosen by his fellow baseball teammates to be one of four players from his team to participate in the All-Star game last weekend.  Aidan eats, sleeps and breathes sports...any sport.  In fact, he can make up a game with just a few items he finds laying around outside.  He is the kind of kid who needs to always be busy.  He can have hockey, soccer and baseball games all on the same day...and then he'll still come home and beg his dad to go outside and play kickball with him.  I have always joked that he needs an "off switch"...or at the very least I would love to be able to remove his batteries once in a while!  I don't know where he gets his energy from, but I have heard over and over that his dad was exactly the same way when he was younger!
 

 

 

 

Our Prima Ballerina
Maura danced in her 3rd dance recital on Saturday afternoon.  Her class danced to "Pretty Little Angel Eyes" this year.  Ain't that the truth...she really is a pretty little angel in my eyes!  I have always looked forward to having a beautiful little girl of my own, dancing her heart out on stage.  And I will admit...I am one proud stage mom!  I can still remember long ago when I was a little ballerina and loved to get dressed up in a costume, wear make-up and dance on the big stage.  Now, seeing my little girl do the same thing make my heart swell with pride.  I get so excited for her (and me) when I am pulling her hair back in a tight bun, dusting her cheeks with blush and painting her lips with bright lipstick.  Then, helping her step into her sequin and feather embellished tutu I can hardly stand it...she is gorgeous an I am teary eyed!

Maura has the absolute BEST dance teacher ever...my very good friend since high school, who now has her own dance studio.

Maura (in the middle) with her "bestest" friends

 

 Below is Sean and 3 of his friends from high school, who are all still friends today,
each with their first born daughter, who were all in the same dance class this year...

Really neat! 

Who would have thought 20 years ago that these four guys would all stand together in 2013 at the very same high school with little girls of their own....who are also friends!





GI says...

...let's give her some time.

Audra had her follow-up appointment with GI on Friday.  And I loved what the doctor had to say!  She told me that usually in the situation that Audra is in, with her extremely small size and endoscopy findings, they would recommend to begin tube feedings with a special elemental formula. 

BUT...

Since Audra seems to being doing ok, loves to eat, and doesn't seem to have any terrible food related symptoms (besides lack of gaining good weight) she is willing to give her the benefit of time.  Time to see if she can have some decent catch up weight on her own.  Audra will have her weight checked every two weeks to make sure she IS gaining some amount consistently and the doctor would like to see what happens with her inflammatory markers (the bloodwork levels that were soooo sky high while she was in the hospital) once she is off the antibiotics.  After a few months of documenting weights and bloodwork levels Audra will have another endoscopy/colonoscopy.

So she's got all summer to eat whatever she wants, to her little hearts content.  And this girl DOES
love to eat...ANYTHING! 

Hopefully her numbers over the next couple months will make the doctors happy and her stomach and small intestine will begin to heal some on their own. 

Thank goodness for mirrors in the exam rooms at the doctor's office:

 

I have been looking forward to taking Audra's picture with the panda statue outside of the hospital forever...unfortunately she was afraid of the statue and not too excited about sitting near it: