Quick Updates All Around: Travel, Lice, School, Friendship, and the passing of Amelie

I started this post about lice.  Yes, LICE.  As in Ellie had lice a few weeks ago.  That post isn't completed. . . yet. . .  but I decided to write about more mundane, and less disgusting things today.  Such as, what we have been up to the past few months!

In May, we had Ellie's IEP meeting.  You can learn a little bit more about it here.

It was also my darling, Tabitha's birthday.  My forever daughter in Russia turned 5 years-old and may or may not have aged out of the baby orphanage and transferred to an institution.  Given the adoption ban, I no longer receive updates on this sweet girl.  If any of you happen to know how she is doing, please contact me.

Andrew had a huge conference in Vancouver, B.C towards the end of May and I got to join him halfway through!  My mom flew down to care for Ellie so that Drew and I could have a mini getaway.  This is something we haven't done since Ellie was a baby and it was the longest we were away from her.  We had a lovely time eating out, checking about the water, and meeting up with my friend Lisa.  We went to the Capolano Suspension Bridge which is a huge deal.  I am petrified of heights.  I had this idea that I would swoon from the fear, crack my head open and then fall to my death.  Thankfully, that did not happen.

While we were gone, Austin and the surround areas were hit with record rainfall.  There was massive flooding just to the south of us.  At one point I-35 was washed over.  We had friends lose everything.  People were missing.  We were fortunate that the only damage we had was to our garage.

Bear graduated out of PPCD [preschool preparedness for children with disabilities].  I would love to tell you that she had a big graduation complete with cap and gown, but there was really nothing to mark the day.  She does have a few days of summer school that last about 2 hours/day for 4 days/week for 5 weeks out of the summer.  During her down time, we are having a grand old time with friends.

Girl's night with Sheryl & Rita at Cru Wine Bar

The not so fun part is that all of these doctor's visits seem to have snuck up on us.  My personal favorite is the dentist.  Ellie is usually such  little toot.  Screaming, thrashing, biting - and that is just a daily thing at home with me brushing her teeth.  So imagine my surprise when Bear cooperated for a dental cleaning - tooth brushing, fluoride treatment, flossing!!!

Then of course there was the lice incident, but more on that later.  Let's just say it was horrendous nit combing her hair and taking care of all of her hair accessories - hats, headbands, bows, horse helmet.  

It was very fortunate that the lice infestation was caught the week before our much anticipated trip to St. Louis to visit my parents.  Could you imagine bringing lice to another person's house?!  Ellie and I traveled to St. Louis sans Andrew.  Andrew had just returned from a business trip and needed to put in a bunch of hours at work and he also had great plans to work on the laundry room (this would be the laundry room that was gutted back in late December and the one that I blogged about in March).  

The Chunky Chicken was a rock star on the plane and behaved really well when we went to places like Kaldi's Coffee and this restaurant out in Washington, Missouri to visit my Uncle Robert and Aunt Sue.  Our visit was quick and we didn't get to see many people outside of family.  Ellie tried a ton of new foods - hamburger, deli chicken, alpine cheddar, gluten-free cookie.  I noticed that she did this the last time we went out of town back in March to visit my best friend.  Maybe the change of environment and being around new people make her a bit more adventurous?  We also managed to wear her out because she was going to bed between 6:00pm-7:00pm!

I ended up going with the white and the black mug from
The Shack, but I think I should have sprung for the red one too!

Unfortunately, a huge shadow was cast upon this trip.   My beloved 7 year-old tortoiseshell rescue kitty was compassionately put down.  To be so far away and not get to say good-bye was and has been rough.  The return home was extremely upsetting.  My spunky kitty didn't run to the door to great me.  She will never burst through the dog door and "chirp" at us.  She will never sleep on top of me again.  

Amelie was our honeymoon kitty.  The day we got back from our honeymoon, Andrew and I went to PetsMart to pick up dog food for Rodeo (?-2009) and kitty litter for Tama.  I walked out the door with Amelie in tow.  My little rescue kitten had a whole lot of spunk and personality.  Just after Ellie and I left for St. Louis, Andrew noticed that our Ame wasn't eating and seemed less energetic.  She used to sit on top of the fridge instead was laying around on the floor or on Andrew.

She arrived to the vet dehydrated, constipated, with a temperature of 95 (normal cat temp 100.5-102.5).  It was assumed that she had some sort of infection that entered her blood.  After a bunch of labs, it turns out that she was not septic, but was in kidney failure, most likely due to congenital polycystic kidney disease.  After intensive treatment, it because apparent that Amelie's body was shutting down (she was 91 degrees by the end) and we opted to compassionately ease her suffering.  It was really hard for Andrew to see her like that, but he was with her in the end when she gave him one last "meow".

I miss her so much, but I know that she is now playing with our dog Rodeo and curling herself up in his tail like she used to do back when she was a tiny kitten.

World Down Syndrome Day 2015 : a celebration

This little post will be short and sweet as I believe pictures speak louder than words.  This brief slide show is in honor of individuals with Down syndrome as we celebrate World Down Syndrome Day this upcoming March 21, 2015, but is also really for my daughter Ellie Marie.

Growing up, I knew a tiny bit about Down syndrome as my Aunt Peggy had Ds.  Now, having my own child with Down syndrome, I am learning new things every day - as a mother in general as well as by navigating the special needs world.  Our children are unique individuals who will become contributing members of society.  Make no doubt about it.  While today we promote Down syndrome awareness, I have learned through this whole parenting thing, that while Ellie rocks an extra chromosome, the syndrome is not who she is nor does it define her.  Ellie is Ellie and as a society, we need to be see the value of and accept all individuals of all abilities in their awesome uniqueness.




For those who just learned that your baby may have Down syndrome . . .



https://www.facebook.com/pages/The-Chronicles-of-Ellie-Bellie-Bear/216738345037166

A True Texan

On Thursdays, Ellie goes to the library with her class. Most of the time I have no idea as to why she has chosen whatever book she comes home with as she shows no interest in it during its week long stay at our house. Then she came home with this book:

I know she picked it out.  She was really excited to point at the pictures on every page.

This book is proof that my little Bear is a true Texan.  Made and born in Texas.  Now, of course, each picture was followed by her announcing "Dada".

Yes, we are a truck family.  Our Tundras were designed and manufactured in San Antonio.  Yes, plural.  We used to own two trucks at the same time.  You know, HIS and HER trucks. Then I became all mother-like and got a more family-oriented car which I affectionately refer to as the "swagger mobile" and Andrew drives my old Tundra.  In Ellie's eyes, trucks = Daddy (and Mommy = boring)

Baby Girl doesn't remember when I used to hoist her infant carrier in an out of this monster truck.

Play For All Abilities egg hunt

Ellie:  Ball.  Ball. Ball!

Me: Okay, Bear.  Where do you see a ball?

Ellie: BBBBBBAAAAAAAAALLLLLLLLL!!!!!!

Apparently, Ellie thinks the little pastel, plastic eggs are balls.  Oh wait, never mind, she is nearly tackling to the ground a mother holding an egg-filled basket with a balls painted on it.  BBBBBAAAAALLLLLL! Thankfully, this mother totally understood the excitement surrounding the ball basket and appropriately braced for the impact.

It was early Saturday morning and we were at the Play for All Abilities Park in Round Rock, Texas for an egg hunt.  This is one of my favorite parks but it is 30 minutes from us, meaning we do not make it out here very often.  The Chunky Chicken screamed "Yay!  Oh yeah oh yeah" as soon as our car pulled into the park.  Clearly, it is one of her favorite parks too.

The park was closed to the public that Saturday so that children with special needs and their siblings could participate in an egg hunt.  For many, this may have been their first hunt that they could fully participate in.  True, there were eggs scattered on the ground like a traditional egg hunt, but there were also plastic filled goodies of yumminess strategically hanging by nylon thread from the rails of the playscape.  At such a level that children in strollers and wagons could easily reach them.  There were eggs carefully placed upon the windowsills of the building in the small pretend play town (er, life skills learning center).  A town that is designed for wheelchairs, adaptive strollers, walkers, and wagons. Eggs that were at the perfect height for children in wheelchairs, walkers, or adaptive strollers.

While some of the eggs contained candy, there were ones cleverly marked with princess or car stickers that held non-edible items--a chance for children with special diets to reap the benefits of the prize in the egg rather than woefully think "I can't have this".

At first, Ellie didn't even care about the eggs.  There was sand!!  And sand!  And did I mention, SAND!?  Then the playscape.  Oh how she loved to frolic, er climb and run like a wild child hyped-up on caffeine (and yet, this child doesn't get caffeine).

After her ball-tackle incident, she finally figured out that there were eggs and that the eggs belong in her basket.  The eggs were also BALLS!!!!!  Ellie wanted to play with the eggs.  She didn't really care that each and every single egg contained a delightful temporary tattoo of "Seton Medical Center".  Really?  Come on!  Everyone wants to have "Seton Medical Center" emblazoned on their hand.   Seriously, she didn't care that anything was inside the egg.  She just wanted the balls eggs.

While this is a park for children with All abilities, sadly, people do stare.  Let's face it, my daughter looks different.  She is unbelievably gorgeous and clearly most people are jealous of her beauty and spunk, but she does look like she has, well, Down syndrome.  Some of my friends have kids with Ds, trachs, walkers, and other medical devices and conditions.  People stare.  While I would like to say it is just the children.  The adults also stare and sometimes rather rudely.  It happens and it can be unnerving.  At this egg hunt, there were no stares. There was acceptance.  We were all a part of a club.  A club celebrating the awesomeness of various abilities, but abilities none-the-less and taking a moment to enjoy carefully planned event for our children.  An event tailored towards all abilities.

*Notice the this hot mama isn't in any pics again?  Hmmm.



More about the Play For All Abilities Park:


The park was many years in the making.  Five to be exact.  A park designed for all children.  Typical children, children with sensory issues, children with autism, children with motor issues in wheelchairs or adaptive strollers.  All children.

It is something I used to take for granted.  Accessible parks that is.  Until I had Ellie. Ellie has Down syndrome.  She took longer to sit, to stand, to walk, and to climb than many of her typical peers.  She also has sensory processing disorder.  She has trouble regulating herself and is in constant motion. She needed/needs a safe place to spin, twirl, swing, and climb.  They have equipment at this park that allows Ellie to do all of these things.  She is afraid of water.  Their water table has helped desensitize Ellie.  She no longer has a meltdown if her arms, legs, and torso get wet (her face is another matter and another blog post!).

Each section of the park was carefully planned to be accessible and stimulating for all children. It is fenced in so that my wayward running Ellie Bear does not end up in the parking lot or run over by a train.


There is sand.  Lots and lots of sand.  Good for Ellie.  Good for sensory experiences.  Not so good for mama.  Sand in shoes, car, clothes = laundry + vacuum + bath.

There is also a little town for pretend play, complete with traffic lights, wheelchair ramps, and side walks.  Actually, this town can be used in teaching people about life skills.

The playscape is accessible to wheelchairs and it isn't very high off the ground.  What that basically means is I am no longer having heart attacks and the sprouting of gray hairs when Ellie attempts to climb onto the playscape.

There are swings for all ages and medical devices. Meaning there are swings for wheelchairs, swings that offer greater support, regular swings, and baby swings.  I will tell you, though, there are not enough swings.  There are 7 swings total.  Two of which Ellie can use.  Both of which are typically occupied.  This can cause Ellie Bear Meltdowns.

There are also not enough picnic tables, but that is besides the point.

If you ever happen to be in Austin or Round Rock, be sure to check out the Play for All Abilities Park. Oh and give us a call.  The Bear is always up for SAND!

How I got here: from combat shoes to cowgirl boots

Once upon a time I was born here:

Huh, you don't know where here is?  It is kind of hard to tell with all that muddy Mississippi River water.   krlr, you should know!  Hint: the year was 1993 and sandbags were involved.  A lot of sandbags.  How about now?

Photo courtesy of wikipedia
St. Louis, Missouri

Where I lived with my adorable baby brother

I was looking pretty cute, but I am rather certain my brother had some serious gas when this pic was taken.  Oops, did I just type that for all the world to see?  Scratch that!  Check out that totally stylish rainbow turtleneck I was wearing!  

Moving on! I dressed like this when not primly and properly clad in my little Catholic School Girl uniform:

My poor parents.

These combat boots were steel-toed and red because even a goth girl needs a splash of color:

Sadly these are not my babies, but something similar.  My babies no longer fit me (thank you past pregnancy).
I used to set off the airport metal detector back in the day were you could wear shoes during airport screening.

Then I went off to college here:

Guess where I was?  Let's go Fighting Quakers (guess which college)?  Yeah, I didn't know either until I already donned my red and blue.  Let's go Flyers! Let's go Eagles!  Let's go get a cheese steak!

Where I studied nursing (wearing all white of course, including my ever-so fashionable squeaky white, lace-up shoes) and dressed like this when not in the hospital clinicals:

Do you notice a theme?
This time I added facial piercings and a few tattoos
No, you do not get to see my tattoos.

Eventually, I wondered off to here:

This one is difficult.  Portland, Oregon

And dressed like this:

And worked night shift in a PICU and became involved with the under ground heavy metal band scene.  I made a great roady, especially after I changed out of my Hello Kitty and Teddy Bear scrubs!  

Evilness in the form of a not-so-nice-ex stalked me and I ended back on the East coast to escape his evil clutches in:

The Armpit of America

courtesy of : www.enchantedlearning.com

Oh wait, I mean New Jersey.  Camden County to be exact.  I dare you to look up the crime statistics.  Again, my poor poor parents.  Where I studied more nursing, worked at CHOP (goodness, what a horrible acronym for a pedi hospital!) and dressed as a respectable adult and lost the eyebrow ring:

BONDAGE PANTS!  Oh I miss these bad boys.  Comfy, but not practical at all.  The zippers got caught on everything! (I have a story involving my wicked bondage pants the PATCO subway turn still.  Let's just say it is imperative to be careful with all of those "suspenders" and zippers)

Then this joyful event occurred:

Gorgeous, right?  Tall, blonde, blue eyed AND she is nice.
It was at their wedding that I met my hot and sexy Drew.

There is a soap opera here but to make it a long story short--Canadian-Texan boy meets Jersey girl at St. Louis wedding.  Texan boy thinks Jersey girl is hot (humor me here).  Texan boy says only 4 sentences to "shy" girl.  One year later, girl visits friend in Texas and reunites with boy.  Girl pursues boy, ignoring all possible signs of "he's just not that into you".  Now boy will not leave girl alone. Boy gleefully stalks girl by visiting her in Philly/Jersey every few weeks.  Girl moves to . . . 

You would never guess where I live from this pic.  It was a fluke.  I was fooled!  I actually live in the desert.  As I write this it is 70 degrees. . . in February.  

Which led to a honking, large, double cab, crew max Tundra which was both designed and made in the great Country state of Texas because bigger is indeed better.  Who on earth owns a dinky little sedan or compact car out here?  You can't see a thing between all these trucks!

I promptly traded in my little compact Corolla for this monster truck.
Do you know how hard it was to climb into this bad boy with a wedding dress (and flip flops) on???

Serving BBQ at my wedding because ribs, brisket, and creamed corn are so romantic, clean, traditional, tasty!  

Eventually this she rocketed into our lives--our born and made in Texas baby where BBQ "sause" is mother's milk and ribs serve as teething rings.

After six years of living here, I now have these (and good extra 25 pounds thanks to the delicious Mexican food and BBQ food, and driving everywhere [did you know they have parking lots here?], oh and growing a baby back in 2009):

Of course I had to get red. . . with little metal studs.

There you have it.  I has taken me 32 years, but I am fully Texi-fied, ya'all!

Besides, all that eye liner would have melted off and I would have cook to death in those combat boots and bondage pants!

Looks like Bear needs her own boots.

Happy February-Fun Photo Flashback

My Baby!  Bear was only 5 months old-Feb 2010
(That's my mama in the pic ;-)

Little Miss Sassy!  Her personality was shining through in full force--Feb. 2011
(yeah, those glasses/tiara/heart headband stayed on for 5 seconds)

Still spunky! (yes, she is bare foot and wearing short sleeves.  This is Texas.)--Feb. 2012

Hmmm, I do wonder if Bear will stay still long enough for photos this year?

Happy February!

-A.

Splish Splash

A quick little weekend post. . .

We got a pool.  Nothing extremely large or exciting, but large enough for me and Andrew to climb into the water.  We figured the Bear was such a little mermaid that she would love this new addition to our house.  We were wrong.  She is, in fact, terrified of the pool.  The pool has been taken down and our backyard looks a little less like King of the Hill.

Ellie is rather quirky about her water adventures.  She loves water tables and she firmly believes that she must sit in them for a maximum playing experience.  She believes Sophie's water bowl is her own personal, indoor splash table.  Ellie also loves sitting in the sink and washing her hands.  In fact, after anyone uses the bathroom, she believes that she must wash her hands.  She brings her little step-stool over just so she can dip her hands in to the cool water and splash around.  The bath is finally something she enjoys, except for the whole getting her head wet part.

While the pool was not a big hit, the local splash pad is.  I am thrilled that Ellie has finally learned to embrace the awesomeness of the splash pad.  Last year, she was petrified (last year she loved our friend's pool.  She isn't fickle or anything).  Give the girl a yellow bucket and she is in a state of pure bliss.  

Maybe one day we will be back to this:

CHUNKY!!!!!!!