Halloween prepping

Preparations for Halloween are in full swing around here.

Costumes...check
Pumpkin patch trip...check
Halloween party...check
School parade...check
Pumpkins carved...check

Teaching Audra to say "trick-or-treat"...still working on that one!

Now all I need to do is somehow manage to keep all the Halloween candy I have bought from being eaten by 4 little ones...and a daddy...before the big day arrives!

 

 

 

the case conference

Yesterday was the case conference where doctors from GI and radiology reviewed all of Audra's imaging results.  The hours went by very slowly as we waited for "the call".  Finally, about 6:45pm my cell phone rang.  I recognized the phone number right away...it was Audra's GI doctor.  After much discussion at the case conference the consensus was...Audra most likely has a classic malrotation, not a non-rotation.  This news doesn't really change anything, but it does mean that she is at greater risk of developing the complications associated with malrotation...twisting of the intestines (known as volvulus) which is very serious, even life-threatening if not treated right away.  So far, Audra has lived with this malrotation for 6 years and has been very lucky to have never developed a volvulus.  Malrotation is a result of the intestines not turning into the correct position and fixating to the abdominal wall in the correct place during fetal development.  Audra was born with this condition.  And she was blessed to not have any complications while she was in China.  Now, she will have it repaired by a very skilled surgeon, in the very best children's hospital. 

She is blessed, and we are grateful!

Her surgery has been scheduled for Monday, November 4th.  She will be hospitalized for at least a few days after the surgery.  If she has the somewhat common post op complication of an ileus she could be in the hospital for a week or more.  Once her intestine "wake up" from the stress of the surgery, and she is able to tolerate eating, she will be allowed to go home. 

We are praying for only a few days in the hospital.

Sleeping Beauty

Sometimes a girl just needs her beauty rest...

No matter when and where!

Quite often we find Audra sound asleep in very unusual places!

partially on an ottoman:

(one foot was on the ground holding her up)

in the playroom:

in the game room:

Almost hanging off the step from the kitchen to the family room:

She falls asleep in her carseat every.single.time!

 

Even if it's just a quick ride to the store!

But she's not the only one in the family to be "caught" sleeping in random places:

 and for the boys it almost always involves electronic devices...

even TWO for Aidan!

This is, by far, my favorite sleeping picture.  

Makes my heart smile :)

 

And even sweeter...

when they are supposed to be sleeping,

but just can't resist a little more playtime!

Pumpkin Patch

Today was girls day at the pumpkin patch

(plus Uncle Tim who loves to join in on the fun!)

 

Maura, Audra and I went,

along with

Uncle Tim, Aunt Dawn and Charlotte.

 

 There was a corn maze...

 

 

 and a hay bale slide...

 

Audra was a bit scared of the pumpkins initially,

but she soon warmed up, just in time for...

 

 a hay wagon ride out to the pumpkin patch!

 There were plenty to choose from,

almost too many!

 Each girl changed her mind a few times

before settling on the perfect pumpkin!

 

 

It was a fabulously fun fall day!

Mites on Ice

On Tuesday night Aidan and his ice hockey team had the amazing opportunity to participate in the Philadelphia Flyers "Mites on Ice" program.  The got to play a quick game of hockey on the ice at the Wells Fargo Center between the 2nd and 3rd periods of the Flyers game. 

To say he was excited is an understatement. 

He could hardly sleep the night before. 

He came home from school that day smiling from ear to ear...so excited that the day had finally come!

 

I honestly didn't know how or when I would ever get that Flyers mites jersey off of him.  I am happy to say that today is Friday, and he's no longer wearing it! 

an answer!?!

Audra's GI doctor called me today to discuss the results of the upper GI study she had done a few days ago.  The results indicate that she has a type of intestinal malrotation called "non-rotation".  I am familiar with  malrotation, but a non-rotation??  Never heard of it!  She told me that Audra's case is going to be reviewed at a conference to be held this coming Tuesday with multiple GI doctors and radiologists.  She said they would review Audra's history and symptoms as well as all of her radiology exams (xrays, CT scan, MRI, ultrasounds and the upper GI she just had done).  They will also have a discussion with the surgeons to see what the next step should be.  Usually this needs to be surgically corrected to prevent the intestinal complications that are likely to occur if left untreated.  I am anxiously awaiting a call with THE PLAN on Tuesday or Wednesday of next week!

After I got off the phone with the doctor I promptly consulted "Dr. Google".  It sounds like all of Audra's issues with diarrhea, malabsorption, and failure to thrive can be explained by this non-rotation.  I would have never guessed! 

It might sound crazy, but...we are just sooo happy to have an answer.  We feel like progress is being made!  Audra is one happy and strong little girl.  And soon we will have a plan to get her healthy and growing...she so deserves that!

Here are a few pics of my girls enjoying her "chocolate barium shake".  She slurped it down with a smile on her face!  Only Audra :)

Medical stuff...The PLAN(s)!

I'm a little behind...

I want to catch you all up to speed with Audra's "medical stuff" (and also document it for my memory's sake!)

About 3 weeks ago Audra had her ENT follow up appointment.  We discussed the results of the MRI she had last month.  The MRI showed that she has completely normal anatomy of her ear structures.  So, she has all the "parts" she needs to hear (nerves, bones, etc).  They repeated her hearing test...again...and the results were no better.  Next step??  Audra will have a sedated brainstem hearing test to help determine more precisely the extent of her hearing loss.  Right now, with the results they have, they would not be able to put a hearing aide on her right ear.  Only her left ear shows enough response to sound to qualify for a hearing aide.  I think they are hoping this sedated hearing test will show some kind of response in her right ear...which will enable them to fit her for bilateral hearing aides.  Because Audra has failed sedation in the past, she now needs to have all procedures the require sedation done with anesthesia instead.  So, her ENT will combine this hearing test with an examination of her ears under anesthesia and possibly ear tubes.  This will give him a better opportunity to evaluate the perforated tympanic membrane in her left ear and determine when to time the repair of that.  Now we just wait for a date.

Audra saw Immunology about 4 weeks ago.  She continues to perplex all those who seek to "figure her out".  Basically, all of the extensive lab work that Audra has already had done is not overly concerning for an immune deficiency.  However, they are still concerned about her failure to grow, persistent low grade fevers, intermittent diarrhea and her lack of response to some of the vaccines she received in China.  So, those vaccines have been repeated here in the U.S. and Audra will have bloodwork done again next week to see if her body has responded to them.  If yes...end of story, most likely, for the Immunology department.  If not...that will lead them in a more clear direction of "figuring her out".  

I have had bi-weekly phone conversations with Audra's GI doctor.  Audra's latest round of testing on her GI "samples" revealed that she is eliminating excess sugar, instead of her body holding onto it and absorbing/processing it.  This is concerning for a malabsorption process. 

She also has H. pylori...again.  Or maybe it was never fully treated last time.  This is a bacterial infection of the GI tract.  She was found to have H. pylori while she was hospitalized in May and she was treated for it with two different antibiotics and an acid blocker for two weeks.  The GI doctor is deciding if Audra should be treated again, with different antibiotics...she is cautious because Audra developed a C-diff infection last time she was the antibiotics for so long. 

Tomorrow Audra will have an Upper GI study done (aka: she swallows barium and they take video pictures of her anatomy).  The GI doctor thinks this may show thickening of her small bowel, which would lead them to believe that an inflammatory process is causing Audra not to gain weight.  

Next step...another endoscopy/colonoscopy.  No date yet. 

That's all for now...and that's enough.

In other, more exciting, news...

Because one birthday party is just never enough (but especially for my girl who is celebrating her birthday for the very first time ever!!)...

Today we celebrated Audra's "last 6th birthday party".  We had a little lunch party with Audra's Godmother and her two girls who couldn't make it to the Carousel Party last weekend.

Fun, fun, fun!

Half a Year!

Six months ago today Audra was placed into our arms. 

Our hearts melted at the very sight of her

and we were instantly in love with her
and changed...forever!



Below is a video of photos from our trip to China.

Please enjoy!

 

Audra, just moments after she has placed in our arms

on April 8th, 2013:

 

The past six months have gone so fast, and have been full of many, many wonderful moments. 

There have been so many firsts for Audra...so many new, never experienced things...

swimming

sprinklers

fireworks

sand

the grocery store

amusement park rides

parties

milkshakes

presents

fancy dresses

pretty shoes

family get-aways

hotel stays

her own room

her own clothes

her own toys

a home

and

a family!

 

May 2013
1 month familyversary:   

Audra's first month home was primarily spent in the hospital.  Three ER visits, two admissions for a total of 23 days, countless tests & procedures, and a total of 29 days of illness.

Boy, were we glad to see the month of May come to a close and finally have our whole family at home under one roof on May 28th .  Something that we had only experienced for a few days since we left for China on April 4th.

 

June 2013

2 month familyversary:

 So very glad to be HOME, healthy, and finally all together as a family of six!

 

July 2013

3 month familyversary:

 

Audra was a flower girl in her Aunt Kristy's wedding



 She had her first haircut

 And she was baptized

 

 

August 2013

4 month familyversary:

Audra started preschool

 

September 2013

5 month familyversary:

Audra started ballet lessons

 





and she celebrated her 6th birthday!

 

October 2013

6 month familyversary:

Audra had her very first ever birthday party.

 

There is lots more to come in the month of October,

the next six months of our first year together,

and of course FOREVER!

 

Can't wait to share it all with you.