Thanksgiving

So thankful...

For these 4 kiddos...

and all their cousins...

and most of all,
our sweet little family...

My big girl Maura who is thankful for her newest little cousin, Teagan...

Appointments galore

November has been full of medical appointments for Audra.  I hate having to take her out of school so frequently, but it is nice to have so many of her follow up appointments behind us now going into the holiday season.

November 4th:  Ophthalmology

The eye doctor has been the one and only specialist that Audra's sees who is not a part of the CHOP (children's hospital) network.  We love the eye doctor Audra has been seeing but for continuity of care and collaboration with providers we felt it was important to switch her eye care to the CHOP network as well.  This was her second visit with the CHOP eye doctor.  The plan was to attempt to get better visual acuity testing done, but Audra is not the most cooperative patient.  Cute...yes, BUT stubborn...also YES!  And her severely delayed language skills make any testing challenging.  Bottom line...the eye doctor believes that her current eyeglass prescription is correcting her vision appropriately.  The other concern is her eye crossing.  At this point the eye doctor is hopeful that the glasses will continue to correct that problem as well and our fingers are crossed (no pun intended!) that she will not need eye muscle repair surgery.  Time will tell.

November 5th:  Neurology

This was the follow up to our many follow ups in an attempt to figure out what's going on in that little noggin' of hers.  Gosh...if only Audra could tell us!  Her EEG's continue to abnormal but she hasn't shown any physical signs of seizures.  We are trying to forget about the EEG findings and just treat what we see.  But it is hard to forget about the big, scary "thing" lurking...wondering if and when it may appear.  My biggest concern is that all of the "misfiring" (epileptic discharges) happening inside her brain is hindering her developmental progress.  I am told this is not likely, but it's hard to think otherwise.

November 5th:  Sleep Lab

Our little sleeping beauty can fall asleep (and stay asleep) ANYWHERE!

Literally.

As evidenced by the picture above...a 20 minute cat nap on the playground swing at school.

Unfortunately our first appointment with the sleep lab didn't get us any closer to a full nights sleep {or a full day of wakefulness}

Audra's extensive medical history as well as her significant developmental delays make it nearly impossible for them to diagnose a sleep disorder.  Or treat said sleep disorder.  Because of her very erratic sleep schedule they do not believe that a sleep study will provide them with any useful information.  So for now we are trying Melatonin, which I don't have much faith in.  The next step would most likely be a stimulant medication which would promote nighttime sleep and hopefully improve her ADHD symptoms too.

November 13th:  Endocrine
{{sorry. no cute pic to depict her Endocrine issues}}

For the very first time EVER...

Audra has one growth measurement that falls ON the growth chart.

Her BMI is at the 15th percentile.  This is HUGE!!  For as long as ever, she has never had one measurement plot anywhere near the lowest point on the growth chart.  Her weight for age and height for age still fall far below 0 percentile, but she at least has enough meat on her bones for an acceptable BMI.  At 8 years old she is now 41 inches and 34 pounds....about the size of a 4 year old.  

But this is amazing...

a long way from the 19 pound five year old wearing 18 month clothes that we brought home just two and a half years ago!

And now that her BMI is in a good range, the Endocrinologist thinks she will have some rapid gains in the height department.  We are giving her another year of growth until we revisit the growth hormone discussion...which I really hope to avoid.  

November 13th:  GI

This was probably her first GI visit where there really wasn't much to talk about.  Her measurements are good and her symptoms are minimal.  Everything is status quo and now the nutritionist will take charge with tweaking and managing her tube feedings.

November  24th:  Immunology

We had a great Immunology visit.  Audra has been receiving the weekly immunoglobulin infusions for 11 months.  And the past 11 months have been her healthiest yet since we brought her home!  No coincidence there.  While her first year home saw her in the hospital multiple times for weeks at a time...since starting the infusions she has only had two {short} hospitalizations :)
After this visit she had lots of immunology labs drawn to re-check her immunoglobulins, antibodies, B-cells, T-cells, etc. etc. etc.  She was a "one stick wonder"!!
One poke, lots of vials, and practically no tears.  

and hopefully...

This month (or next) we will hear from the Genetics team with the results of Audra's genetic testing (whole exome sequencing).  Our insurance company denied the request for the testing, but luckily Audra was able to be enrolled in a research study which provides the exact same testing free of charge.  However, that has meant a much longer wait for results.  We have been waiting for nearly 16 months now.
"Any day now" I keep telling myself!

Halloween

36 hours of Halloween Madness...

Friday afternoon:  Maura's school parade

Unfortunately Maura and Audra's school parades were at the exact same time.  But miles apart.  Sean left work early and we opted to go to Maura's parade since we worried that Audra would get distracted and/or upset by seeing us but not being able to be with us.

Saturday noontime:  Little girls Halloween party

I have faithfully had a children's Halloween party every year since Riley was a little guy.  At first it was fun to get the little one's together and dress them up since there were too young to understand and enjoy trick-or-treating.  It still worked while they were in preschool and kindergarten because we could all get together around lunchtime...the kids enjoyed costumes, crafts, and candy..while the moms enjoyed Fall treats like pumpkin bread and hot cider.  And it seems I've had at least one kiddo in pre-school or kindergarten for about 12 years!  This was the year that it would end though...Audra is in full day kindergarten.

But Maura really wanted to have a Halloween party.

So we pulled together a last minute event with all the supplies I have left over from years and years of parties!

Charlotte, Maura and Audra

Saturday evening:  Trick-or-Treating

The Nurse, The Cheetah, and the...scary swamp-guy thing??

We had perfect weather for trick-or-treating.  It wasn't too chilly and there was no wind at all.

Since our quite little street with just 5 other houses probably hasn't seen a trick-or-treater in many, many years we decided to take our festivities to a neighborhood just down the road.  Aidan has a friend in that neighborhood who he met up with while Sean and I took the girls around.  This neighborhood really gets into the Halloween spirit!  Everyone was set up outside in their driveways with fire pits, lighting, music and lots of candy of course...big full size candy bars too!  There was even one house that set up a haunted house.  And at the end of the haunt they gave each dad a beer! 

This little one could probably BE a nurse without ever having gone to nursing school.

She's been in the hospital enough times that she practically takes her own vital signs!

She loves to help with her G-tube flushes and feedings.

And she thinks she knows how to set up her infusions.  

Although I doubt she would ever put the needle in herself!

October happenings

With the busyness of back to school settling down I assumed I'd get more prompt with my blog posts. Maybe next month!  So, I will save {you and I} some time and just wrap up all of our Octobers happenings into this one post.  Well, except for Halloween...that deserves a post of it's own !

The Carousel

The girls and I love visiting the local carousel.  It's been around forever and is only open to the public about once a month.  Audra is sporting her "official" Perkasie Carousel t-shirt that she got as part of her party package when she had her very first ever birthday party at the carousel.

Pumpkin patch

We went on our usual pumpkin patch trip with Uncle Tim, Aunt Dawn and Charlotte.  The boys are getting too old to enjoy this anymore :(  Hoping we still have a few years of the little girls looking forward to it.

Call it creativity {or lack of time and energy}...

Daddy convinced Maura to spray paint her pumpkin instead of carve it.

Effective....yes,

Traditional...not so much

Bowling fundraiser

Tim and Dawn had a bowling fundraiser for their adoption that is in process.  It was a fun afternoon of bowling, pizza and raffles.

This was supposed to be a sweet girls picture...I didn't know Sean was photobombing us!!

Three little beauties from China...all home for 2.5 years now

Audra, Charlotte and friend Amanda

Getting in the Halloween spirit

Audra has a bunch of Halloween hand-me-downs.  It's been fun dressing her for school this month.  I didn't get pictures of all of her outfits, but here are a couple...

Audra's 8th Birthday

My pretty little princess turned EIGHT years old today!

She's been home for 2.5 years and this was her third birthday with us.

I think she is finally getting the hang of this birthday thing...

There was definitely less prompting needed for her to blow out her candles and open her presents :)

This weekend also happens to be the Chinese holiday Mid-Autumn Moon Festival so yesterday we had a double celebration!

Pretty little girl with her beautiful BIG cake

Daddy had cake serving duty...

Audra wore one of her traditional qi pao dresses and a sweet little friend came dressed for the occasion too :)

Last year we released sky lanterns the traditional way...

by lighting a flame and watching them float away at dusk.

There may or may not have been a bit of a close call involving a lantern on fire...

So this year we opted for lanterns filled with helium balloons!

It worked just a well and was almost {but not quite} as pretty.

Today I got some precious photos of my birthday girl...

I love this one...it shows her true self!

She has been loving mooncakes this year.  She ate one last year, but this year she can't get enough of them.  She had one at the party last night, then had one for breakfast today, and at dinner time she wanted another!

This evening we celebrated with a tradition birthday cake:

She needed a little help to blow her candles out

But presents??...She's got that one on her own!

A little bit of beach

My brother got married last weekend...

in North Carolina...on the beach :)

And since we didn't do our annual trip to Outer Banks this year, we were really looking forward to going to the wedding and getting a little beach time in...even if it was only for a few days.

Just the girls and I went, we drove down on Friday with my parents.

Here we are about 3 hours into the trip and everyone was still smiling!

My dad and I traded off driving and navigating, 

while my mom had entertainment duty in the back seat.

8 hours and many snacks, games and naps later...

we arrived!!

First thing we did after unloading the car was head to the beach!

Lucky for us, the hotel we stayed at was on the beach so it was just a few steps to the sand and water.

Saturday was the rehearsal luncheon.

I loved dressing the girls all "beachy". 

Family selfie at the luncheon:

Tyler (nephew), Steve (brother), Brandie (sis-in-law), Mom, Dad, Me, (Audra hiding somewhere), Maura, Moriah (niece), Mike (brother)

Oh, there she is...

little sleeping beauty!

After the luncheon we went straight back to the beach...

...to collect seashells,

...and splash in the waves.

After some fun in the sun, we put on proper local attire and found a great little restaurant for dinner.

Sunday morning (Wedding Day) we squeezed in a little bit more beach time before the big event.

We built sand castles...

and Maura made her own puddles for jumping in.

We also spent time at the hotel's pool complex.  There was an outdoor pool, a kiddie pool, a lazy river and an indoor pool with a hot tub!  We made the rounds and visited each one :)

By early afternoon it was time to get ready for the main event.

My sweet girls looking all fancy and so excited to be going to a wedding.

The wedding was outdoor, on the beach, and it was quite windy!  We had to stand in just the right direction for pictures so the wind didn't blow our hair into our faces.

Maura and Moriah collected shells before the ceremony...

(and they had matching mint green attire...totally not planned!)

It's official!

The new Mr. & Mrs.

My parents with some of their grandkids...

(someday we have to get a picture of them with the whole gang!)

My and my pretty girls:

Maura and Aunt Brownie taking a selfie:

Here's the end result:

Maura and Moriah owing the dance floor:

The Mrs. Riley's

They had the cutest wine glasses that you could write on with chalk,

My mom..."the original Mrs. Riley"

My sister-in-law Brandie..."the other Mrs. Riley"

and my newest sister in law...the bride,Valerie..."the new Mrs. Riley"

(wish I got a picture of that one!)