8 months...1st snow!

Today is our 8 month Familyversary. 

 

The day almost got by me before I realized what a special day it was.  

Now, after only 8 months, we have a hard time remembering "before Audra".

I almost can't believe she hasn't always been with us..

her sweet face,

her contagious laugh,

her lovable personality,

 

We are so lucky to have her as our daughter.

We are the lucky ones! 

 

 

"Crazy" things were happening all day for Audra...

 

She couldn't figure out what all the white "stuff" falling from the sky was...

her First Snow

(and she did NOT like it!)

 

Audra is from southern China, where the lowest average temperature is around 50 degrees.

She has never seen snow, 

or felt air this cold!

 

I did manage to convince her to get a few cute pictures...

as long as she didn't have to touch it!

 

 

 

Once she was safe inside, away from the crazy white stuff...

she was completely confused when she saw us bring a tree inside the house!

 

She was happy to join in the fun of decorating the tree...

again, as long as she didn't have to touch it!

(do I see a theme here?!)

 

  

 

 

Days like today, experiencing things through the eyes of Audra for the first time, make even the smallest of things seem so wonderful. 

 

My Blessings

I hope you all had a very Happy Thanksgiving!

 

This year, even more so than any other year, I am feeling abundantly blessed.

As I sit and count my blessings I am in awe of how very fortunate our family is.

And I am thankful!

For my smart, funny, kind 12 year old boy, Riley

For my silly, friendly, energetic 9 year old boy, Aidan

For my tiny but mighty, brave and resilient 6 year old little girl, Audra

For my sweet, feisty, imaginative 5 (going on 15) year old big girl, Maura.

We celebrated Thanksgiving with my family at my parents house.  Audra looked adorable in her "turkey dress".  And she was thrilled when the buffet of food was ready for her consumption.  Her eyes were wide...but her smile was wider!  She ate some of everything...actually, ALOT of everything.  She tried it all!  And by the end she was looking very stuffed.  So, in true American post-Thanksgiving meal tradition...she took a nap!

Our day was good!

Blessings to you and your family...

Her sweet face

One year ago today we saw Audra's sweet little face for the very first time...and we just knew.

Right away.  Both Sean and I.

I was breathless...she was stunning!

And we were never the same again.

She was our daughter...we knew at that very moment.

Home again

Audra was discharged from the hospital today :)

Her final urine culture results came back yesterday and they were able to put her on an oral antibiotic that will cover this particular bacteria.  Luckily, the bacteria this time was more susceptible to antibiotics than the bacteria she had in her urine in May.  The final read on her ultrasound indicated that the "area of concern" was scarring from her previous abscesses.  There are not any new abscesses. 

Urology will see Audra as an outpatient once this infection has cleared up.  After she finishes this course of antibiotics for the infection she will start taking a prophylactic antibiotic daily until she has further testing done.

Audra's GI doctor stopped by with a few recommendations, since she will be on antibiotics for a while...and we know how antibiotics affect her GI system and lead to weight loss. 

The Immunology team came to see Audra today as well.  They are concerned that she continues to have persistent fevers and now another serious infection again, in addition to her recurrent diarrhea and lack of weight gain.  The plan is more bloodwork (to check her B-cells this time) and follow up in the clinic in a few weeks.  Audra's December calendar is filling up fast...

General surgery follow up
GI
ENT
Audiology (very excited about this one!!)
International Adoption clinic

and now:
Urologic testing
Urology clinic
and Immunology

Hopefully I'll find some time in December to start (and finish) my Christmas shopping...and of course get back to work...to pay for said Christmas shopping!

For now, I am looking forward to Thanksgiving next week.  At home.  All together.  Our little family of six!  It's been quite a year and we have so.very.much to be thankful for.  Most importantly this beautiful child who we are so blessed to call our daughter:

Audra update...

Yesterday's events:
I took Audra to the pediatrician yesterday morning.  She had fevers of 105 Monday evening and through the night into Tuesday morning.  Terrible fevers...with shaking, moaning, and gagging.  Just like 6 months ago.  Because her pediatrician didn't like the way she looked, and because of her complicated medical history, he told us to take her to the local hospital's ER.  There is a CHOP doctor on staff at that hospital and he called to let them know we were on our way.  Audra had her bloodwork drawn which showed that she has a significant infection going on somewhere.  Her inflammatory markers were very elevated...just like 6 months ago.  She had an ultrasound that was concerning for something going on in her left kidney again.  The ER doctor contacted the specialists at CHOP and they said Audra should be transported downtown.  After a long day at the pediatrician and ER, we left for CHOP at 6:15pm.  Audra had her first ambulance ride.  It would be nice if that was also her last!

I almost feels like we never left CHOP.  But this time I have my mind set on not getting "settled in". 
Audra is really making the rounds on the units here at CHOP.  She's seen 7west, 5east, 4south...and this time 9south. 

Some things are the same (as her other admissions)...
~Audra captures the hearts of everyone here.  She is pleasant, cooperative, and so stinkin' cute!  (Not my words, but yes, I would say I agree!)
~She continue to "perplex" the doctors. 
~Audra's PICU fan club has jumped right into action again...filling in for me at work, stopping in to check on us, bringing snacks and other essentials.
~She is receiving the best care possible in the best possible place.

And some things are very different (from her last admission)...
~not only can Audra order food whenever she wants...she also has snack trays delivered to her room three times a day.  The food never stops arriving, all day long!
~and I don't have to eat in the bathroom :)

Today's update:
Audra had another ultrasound done today.  This ultrasound didn't show the "area of concern" that was seen on yesterday's ultrasound.  Her last fever was at 2pm.  She is still on IV antibiotics until we have the results of the urine culture done yesterday.  The preliminary results show that something is growing.

The Infectious Disease team came to see her...they would like to do another urine culture after 48 hours of antibiotics to make sure things are improving. 

Urology was consulted since this is her second pyelonephritis (kidney infection) in 6 months.  There is nothing they would like to do urgently.  Once Audra has finished this course of antibiotics, they want her to remain on prophylactic antibiotics until they can do further testing. 

Immunology will be by tomorrow.  I am anxious to hear there thoughts. 

She is in a better place today than I thought she would be.  Her fevers have spaced out a bit, thankfully!  She looks and feels good in between fevers (just like 6 months ago).

If this is just pyelonephritis, we could be out of her on Friday. 

Again?!?!

Audra is sick again.

She has been having high fevers to 105 every six hours for the last 36 hours.

Her bloodwork indicates that she has an infection somewhere.

And she feels just terrible.

We spent all of today at the pediatrician and then the local hospital ER.  She was just transferred to CHOP and we are getting settled in...again.

Everything feels like May 2013 all over again. Hopefully they can figure her out quicker this time.

Enough is enough.

This sweet girl needs a break already.

Please pray for her.
For her health and her heart....this is just too much!

I will update tomorrow after we see all the doctors and have a plan.

All Ears

We have been waiting for this day for what seems like forever!

Today Audra was back in the OR (just Day Surgery thankfully!) for a sedated ABR hearing test, a more thorough examination of her ruptured ear drum and to top it off, possibly ear tubes.

She was less than happy to have been woken up at 4:45 this morning, offered only a clear liquid to drink, and then loaded into the car in her crazy footsie pajamas again. She knew exactly where we were headed.

I have been worried all weekend that Audra might not make it into the OR today...not because she would flat out refuse to go in there again...but because she has been having fevers up to 102 since Thursday evening.  She's not sick though...no cough, no runny nose, nothing...and the incisions from her surgery two weeks ago look fine.  No signs of infection anywhere.  Today, as we waited to be called back to the pre-op area I could tell she was brewing another fever.  And by the time they checked her vital signs she was shivering and her temp was 105!

Our hearts sank. We really, really need this hearing test to be done so we can move forward with getting her hearing aides.

Thankfully, today Audra had the same anesthesiologist that she had when she went to the OR with a high fever during her hospitalization in May. She remembered Audra and her story and she was ok with proceeding today.  Thank Heavens!!!

Everything went very well today.  First the ENT doctor examined her ears. The left ear drum is still ruptured and we will discuss the surgical repair of that at her next appointment.  And she did not need ear tubes! Yay!  The ABR hearing test showed...GOOD NEWS...her right ear has moderate hearing loss (not no response to sound like the other hearing tests have indicated) so she can get bilateral hearing aides!!!  Her left ear has moderate-severe hearing loss which might improve some once that ear drum is repaired.  We will see ENT in a few weeks to discuss the tympanoplasty further.  More good news, which I wasn't even expecting....they did the molds for her hearing aides today in the OR !!!  One step closer to getting our girl to hear better. 

She came out of the OR with a fever of only 101, sitting up looking great.  She makes my heart smile...she is so resilient. 

Ironic as it is (or as everything with the journey to these two beauties has been)...

Both Audra and Charlotte were in a Day Surgery today, at the same hospital, having procedures done that involved their ears (although quite different procedures).  Charlotte arrived shortly after Audra came out of the OR. I quickly went to see her and give her a good luck hug.  Charlotte went into the OR just as Audra was being discharged. We stopped by the waiting room before heading to our car so we could see Uncle Tim and Aunt Dawn and make sure they were ok.  They were just getting settled in for their big wait.  We are now home and just heard that Charlotte is out of the OR and did well also.

The girls with their first set of "ears"...