Results

I finally have some results and plans for this whole neurology situation with Audra.

She had her MRI a few weeks ago.  She did amazingly well...didn't fight too hard getting the anesthesia this time, and woke right up...happy and ready to go home!

The neurologist called us about 9:30 that night with the results.  Audra has a few abnormalities within her brain.

One (periventricular leukomalacia) is most likely a result of her being born premature and it's effects on her development are hard to know.  Basically, "it is what it is"...it may or may not be the cause of some of her developmental delays...but it won't progress.  Many kids with PVL also have cerebral palsy...Audra does not.

The second abnormality is more concerning...Heterotropia (basically abnormal development) of her grey matter.  This finding makes the neurologist more concerned that Audra is having seizures, especially since her EEG was also abnormal.  He thinks she may be having absence seizures that we cannot see, and seizures while she is sleeping.  I have written before about my "Sleeping Beauty"...and Audra's unique ability to fall asleep anywhere for just a quick 10 minute nap.  The doctor is concerned that she is actually seizing, not sleeping during those "cat naps".

So, the next step is to admit Audra to the hospital (on November 13th) for a few days of video EEG monitoring.  While I hope that they find nothing...I also hope they find something.  The neurologist feels that if she is having seizures, the area of concern is near the language center of the brain and could explain Audra's severely delayed speech.

Identifying a new problem to solve an old problem isn't what I am looking for...
but finding a way for my girl to talk sure is!

If medication to treat seizures helps Audra gain developmental skills then we're in!

This is actually the most hopeful I've been in quite some time.  Strange as it seems.

Walk of Love

Today was the Brittany's Hope

Walk of Love

and

Audra was their 2014 Hope Child!

It was such an honor for her to represent this organization and their beautiful mission...

"improving the quality of life for all God's children, especially those who wait in institutions or orphanages"
by facilitating special needs international adoptions.

It IS the fundamental right of all children to have the security and love of a family.

Maura was so excited to help carry the flag for China during the walk...

It was such a fun day!  

The weather was absolutely gorgeous and the location, Ironstone Ranch, is just beautiful.

Carnival style games, face painting, pony rides, raffle baskets and meeting Chuck-E-Cheese himself.

And then, a yummy lunch for everyone.

Afterwards we went to the Turkey Hill Experience.  

It's kind of like Hershey's Chocolate World...

but for ICE CREAM!

And while there, you can have unlimited free samples of ice cream and iced tea!

Maura staying within her comfort zone...only vanilla for her,

but Audra and I enjoyed banana and coconut!

You get to create your own ice cream flavor, 

design the container 

and star in a commercial advertising your product.

Here is Maura working on her creation...

Cherry-Berry-Licious

(cherry, strawberry, marshmallow, gummy bear ice cream)

For an additional fee you can also visit the Tasting Lab where they actually make your ice cream flavor for you to taste.  We hadn't planned to go to the Tasting Lab, and after seeing Maura's ingredient choices I wasn't disappointed about missing out on the experience. 

Milking a cow...
ice cream making sure is hard work!

another layer

I am still in the middle of getting all of my posts from our Disney trip done (so be sure to check back for them because the end of our week was the most fun!)...but I wanted to get this update posted today.

With Audra, it seems like every time she is referred to another doctor, that doctor finds something new that needs to be addressed.

Like peeling an onion,
Thin little layers, one at a time,
Which results in tear-filled eyes for me...

About a two weeks ago Audra saw a neurologist for the first time.  She had been referred by her speech therapist and physical therapist who had concerns about Audra "zoning out" and being unresponsive to visual and auditory stimuli for short periods.  Also of concern is her significant developmental delays and lack of progress towards her goals in therapy.

I have not noticed these zoning out episodes at home, but I did mention to the neurologist about Audra's unique ability to fall asleep abruptly...anywhere...anytime.  Little cat naps that only last about 15 minutes.

We left the neurologists office after that visit with a referral for an EEG.

Friday night (while I was sitting in stopped traffic on the expressway on my way home from work) the neurologist called me...Audra's EEG is abnormal.  She didn't have any seizures during the 30 minute EEG but she did have abnormal brain waves on the left side of her brain that make him concerned she is likely to have seizures.

Boy did that make for a long rest of my ride home!  I know that it is important (and absolutely in Audra's best interest) to find and fix everything we possibly can for her medically, but sometimes I just want to stop looking.  Mostly because I know we will find something...which will lead to another doctor, another test, another procedure and another diagnosis.

Interestingly...the location of these abnormal EEG waves are possibly contributing to her severely delayed language skills.  I, along with Audra's hearing therapist and speech therapist, have been concerned about why her speech hasn't noticeably improved since she got her hearing aids 9 months ago.

The next step is tomorrow...

Audra will be having an MRI of her brain to see if there is anything structurally wrong on the left side that could be causing the abnormal EEG.

And there is a bit of a silver lining...
Audra needs to have anesthesia for all tests/procedures that usually require sedation.  So, lucky for her, tomorrow while she is under anesthesia they will draw all the bloodwork she has been needing to get done for her endocrinology and immunology doctors :)

Tomorrow, about 8:30am...
prayers are so.very.appreciated!

Celebrating Seven

Tonight we had a small gathering of family and friends to celebrate Audra's birthday.  

She must have had a bit of stage fright because she wouldn't blow out her candles.
Not even a single one!

And we know she can do it because she did it without any prompting on her birthday in DisneyWorld.

Someone behind her right side just might have helped her out...

Eating her cake, though, was a whole different story...

She had no trouble digging in,

quite literally...with her tongue!

And opening gifts...that was no problem for her either: