Happy 9th Birthday, Ellie!

Can you believe it?  Nine years ago, our world changed forever. . . for the better.  Yes, we were off to a rocky beginning.  Andrew and I nervous about being new parents.  (Andrew was scared to hold her and feed her) What if we mess up?!  Yes, we will mess up and then what?!  We were trying to get over the shock that our tiny, perfect baby surprised us with her extra 21st chromosome.  We were elated.  She's perfect!  We were scared.  We had this vision on how things were going to be and then the sassy Ellie Bellie Bear (yes, she was sassy even as a newborn) threw us through a bunch of loops.

I still cannot believe that I have a 9 year-old (read: that I am old enough to have a 9 year-old even though I have the white hairs prove it).  I feel like she was just a little toddler yesterday.  This year has brought many changes.

Ellie Bear is making a ton of friends at schools and when she is on her best behavior - with kids on playscapes.  She loves to dance in her 2dance2dream class and at home to YouTube videos.  Turkey Bear enjoys her horse therapy sessions and always asks to dance with her respite care provider, Kyla.  Over the summer, there was lots of father-daughter bonding time at the swimming pool.  The Bear stills favors Mickey Mouse over all other shows, but she does like The Wiggles (who she got to meet on her Wish Connection trip), Frozen, Nina Has to Go short stories, and Daniel Tiger's Neighborhood.  Her favorite bands to dance to include: Like a Storm, Skid Row, Guns n Roses, Queen, and Aerosmith (yes, I am raising a metal head). . . and just to add in some country (a true Texan), Cole Swindell.  Her favorite playtime is pretend play with her stuffed princess dolls.

She is trying to talk!  Ellie is imitating everything we say. . . as in after I said a choice cuss word at a guy who cut me off and she repeated the second half of the word. Hint: it rhymes with "sass".  Right now, her two favorite phrases are "there is (she/he) is!" and "bye y'all!"

Ellie Bear finally gained weight after being diagnosed with Failure to Thrive for 3 years.  She also grew a lot.  Who's taking bets that she will eventually be taller than my 5'2"?  Any takers?  

Just Chilling

If you have been reading this blog for any length of time, you know that when there is a big gap between posts, it is because nothing major is going on.  I am happy to say that things have finally calmed down.  Oh we still have doctor's appointments and therapies, but things are good.

Since Ellie has switched from the FCC classroom from the FAC room, she has been doing well. In fact, the teacher has not seen any challenging behaviors.  We all keep saying "just wait".  I don't know why she has stopped shirt pulling and pushing as she is still doing these things in therapy waiting rooms.  Maybe because she gets more attention as there is another aide in the FCC room?

She is doing so well that she received an Eagle Pride Award at school.  She was pretty excited - mainly because she got a piece of paper.  Andrew and I are very proud of her.  At times, it seems that the whole focus is on her negative behaviors and regression.  It is good to see her rewarded for her good behaviors and accomplishments.

Ellie had a dance recital this weekend.  This is with the 2dance2dream charity.  Studios around Austin offer up studio space for a free dance class for children with disabilities.  The older students are act as volunteers to provide more one-on-one support.  I would love to tell you that Ellie danced.  She did not.  She stood there and allowed the volunteer to stand behind her and move her arms around. Oh she did do a bit of jumping.  She also sat on the stage for half of the dance and attempted to crowd surf twice. This is usually how it goes.  She has two recitals - the studio recital (in this case Evolution Dance) and then the 2dance2dream recital.  For one she will do most the dance and the other she will attempt to run away and throw herself on the ground.

I think in my last post I mentioned that Ellie had high blood pressure.  Last month, we went to nephrology.  Of course her blood pressure was completely normal.  The first normal reading I had seen in a year.  Our 1 month follow up was this week and again it was normal.  Figures.  So Ellie doesn't really have high blood pressure and we can finally cross one specialist off our list of people to see.

Glasses.  Oh the glasses.  It isn't going too well.  I can get her to wear them in 5 minutes increments.  As in she wears them for 5 minutes and then I have to tell her to put them back on.  This will go on for a 1/2 hour and then nothing I say or do will get her to put them back on.  They have the little strap in the back and she can still get them off.  I am not sure what to do.  Just keep putting them on her and hope she gets used to them?




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July Update: The Fun Stuff and The Medical Stuff

Believe it or not, there is not much to report.  July has been relatively tame with the usual therapies, fun summer activities, and only 2 doctor's appointments.

The Fun Stuff:

At the very end of June and into July, my mom (Baba to Ellie) visited from St. Louis.  We had a full schedule trying to fit in everything we wanted to do.  With each visit, we make sure to get breakfast with awesome coffee and head to the mall to ride the train.  It is tradition, you know!  We went to a 4th of July BBQ at my friend's house - the friend I have known since I was 8 years-old, the one who introduced me to my husband.  We had a great time and Ellie was very well behaved.  You all know what a feat that is.

Ellie and Baba

Ellie is still trying to hard to talk.  She is saying new words such as arms, kick, and fast (sounds like *ss).  Girlfriend certainly has her curse words down. Her speech therapist had me write down 10 of her most favorite foods so that she can work on these words specifically.  At the very top of the list is "cake". Right now, she signs it incessantly while making the "k" sound only.

4th of July BBQ

At the beginning of July,  Ellie participated in a dance camp for the children who are a part of the 2dance2dream program.  The Bear had a great time and I had 2 hours for 3 days to myself.  It was wonderful.  I did grocery shopping and ran a few errands.

Enjoying dance camp

Last year, we started swim lessons with this woman who works solely with kids who have special needs and their siblings.  Ellie made great progress last year and I worried that she would have lost all her skills during the school year.  Not so, she remembered!  As a child who is petrified of water (aside from baths and a splash pad), she is doing great.  With some assistance, she can swim across the pool.  It isn't super wide, but it is amazing progress.  She knows to hold her breathe and come up for air and moves her arms to propel herself through the water.  She still has trouble coordinating kicking and arm movements together, but that will come with practice.  She is also able to pick up diving sticks from the bottom of the pool.

The Medical Stuff:

Weight Gain-- that's right, our girl finally gained weight!  Nearly 2 lbs.  The Bear is going to be a chunky chicken once again.  Well maybe not but her ribs don't hang out as much.  She is still eating the same amount of food, but we started Carafate for her ulcers.  I am thinking she is finally healing and is now able to absorb more nutrients from her food.  Fingers crossed she keeps the weight on.

Urology: Six weeks people.  Six weeks to get a pre-op appointment!!!  Apparently, GI does not do the cecostomy ostomy and button procedure [Malone procedure].  Urology does.  So on June 16th, we got referred to urology.  She already has a urologist for her chronic urinary retention (which has resolved!  Woooohooooo!), yet she was referred to a different doctor, Dr. C.  Dr. C was out of town.  Once he returned, he took an entire week to get to her chart before referring her to her primary Urologist, Dr. McQ.  At this point, Dr. McQ was out of town.  She was pretty quick to review Ellie's chart and set up phone conversations and emails with Ellie's gastroenterologist.  However, the GI doc wanted to meet with the urologist in person.  They were going to meet up in 2 weeks.  Both docs conversed this past Tuesday and Dr. McQ worked us into the schedule yesterday.  It is a good thing we had a pre-op appointment as GI told the urologist that we just wanted to catheterize and not have a button.  Um, no.  We want the button.  This is why it is good to confer with all people involved in your child's care.

Now, there will be two urologists involved in this 2-4 hours procedure.  The goal is to do this laparoscopically, only Ellie may have a super floppy colon due to the musculature issues and being stretched out.  If they are not able to do it laparoscopically, they will open her up.  I am quite apprehensive about this.  I do not want to do this if they have to make a big incision, but we also need to treat her issues.  We won't really know what will happen until they get into the OR. So coordination for surgery is tricky as both surgeons need to be available for 4 hours on the same day.  Fortunately, we have a tentative date for September 12th.  Ellie will be admitted the day before for a bowel prep and then surgery in the afternoon on the 12th.  After that, she has a 2-4 day post-op hospital stay.  How will I keep this child occupied for that long?! Fingers crossed and prayers that she can have surgery during this time or we are looking at a much later surgical date that may be affected by insurance changes. Fingers crossed that our primary insurance covers this procedure, the bowel prep, and hospital stay (recall they refused to cover Ellie's hospital stay and manometry last month).

Hanging out at the Dentist

Finally, Bear had a blast at the dentist.  I don't know why other than the toys and getting her own tube of toothpaste.  She was fabulous until it was time to floss.  It took two of use to hold her down, but she was great for the exam, brushing, and fluoride treatment.  If only she was that good at home!

As for me, my uterine ablation from last mont failed.  I am looking at a hysterectomy come November.  I am not looking forward to this.  It is a big decision and I flip flop back and forth between going through with it.  It is a 6 week recovery which should be interesting while caring for Ellie.  I will definitely need help.




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Merry Christmas, Happy New Year and Influenza

It is December 27th.  Just a few days left in 2014.  As I click through the photos that captured our Christmas celebrations, I start to look back over the year.

As with any family, there are ups and down.  Triumphs and heart break.

I am going to gloss over the trials--Ellie's gastrointestinal and sleep issues, my torn hamstring and chronic back issues, my canceled trip to see my best friend, Andrew's wisdom teeth removal, my good friend's cancer diagnosis--and focus on the joys for 2014.

Nearly 1 year ago, Andrew left his long-time job at IBM to take a position with Red Hat, Inc. (I have no idea what exactly he does, but it involved tech stuff).  I was excited by the prospect of moving to the Boston area.  After all, I moved to Texas from the East coast and my best friend lived just an hour away.  Andrew was elated he found out that he could telecommute.  In mid-January, Andrew packed up his office and relocated his place of business to  . . . our dining room.  I so did not win the "let's move to Boston" argument, but Andrew is much happier now that he can roll out of bed and go to work in his PJs while working for a company that he loves and believes in.

We celebrating an early Christmas with my parents. 

Andrew also started to work on a bench to go with our kitchen table.  After 11 months, this large, gorgeous oak bench with tons of storage was finally completed and it made its home in our kitchen just 2 weeks ago.  Andrew really has a talent for architecture and wood-working.  There will be a future blog post on Andrew's DIY activities and believe me when I say you will be impressed!

The year of 2014 is the year that Ellie started to really communicate with us and all around her.  Andrew and I started to see changes in Ellie around February and since then, her communication skills have exploded.  Her signs are more fine-tuned.  She continues to make up signs, which confuses us until we finally figure them out using our powers of telepathy.  She is trying to vocalize.  In fact, with prompting, The Bear can say "I want red juice, please"!

We spent Christmas day at my BIL/SIL's new house in Celina.
For once, Ellie didn't run away from me at picture time.
To avoid the stink-eye, I tickled her.

Over the summer, The Chunky Chicken rode a horse for the very first time.  We thought that she would be scared seeing as she was petrified to go near a horse, but she was a rockstar.  Now, every Monday evening, Ellie has horse therapy.  She tells us "horse" and "key key" [donkey]. The changes that we have seen in Ellie are remarkable and I know that horse therapy is one of her favorite things to do.  Dance classes started back up this Fall and with it, Ellie's gross motor skills have progressed.  She is also imitating everything! She also has several of her own "fashion" posts--on this blog, Instagram, and Facebook.  Oh and did I mention that my BABY turned 5 years-old???

A very sleep deprived Ellie was an ornery little thing at her
classroom Holiday party.  She dumped plates of fruit onto the floor and shook her juice
onto the table.  However, when it came time for the piñata, she waited her turn!

As for me, I got my life back on track.  After years of yo-yo dieting and suffering from poor body image, I finally took control of my life and lost almost 30 lb.  In April, I participated in a 21 Day Fix challenge and I saw a significant change in not only my body, but also with my mental health, sleep, and energy levels.  I then decided to do something that was both exciting and scary--I became an Independent Beachbody Coach and run my own health challenges that focus on physical activity, clean eating, and mental health.  These past few months have been both exciting and challenging as I am now self-employed and trying to figure out the home-work-family balance.  This year, I will not be making the resolution to "loose weight", but rather focus on loving myself, becoming stronger, and creating healthier versions of my favorite foods.

Ellie was a little overwhelmed by all the presents at my in-laws' house.
She also didn't understand that some of those presents were not for her.
Well, maybe she did understand and just didn't care!

In May, our little family went to Madison, Wisconsin for a family vacation.  We stayed with my parents in a rented cabin along Lake Kegonsa.  The weather was gorgeous, the scenery was beautiful, and the company was the best.  After a week in Madison, we headed on down to Rockford, Ill where I gained a sister!  That's right, my baby brother Matt finally found a woman to put up with him.  Amber is the sister that I have always wanted and I am so happy that Matt finally got around to proposing to and then marrying her.  I would have been really unhappy if he let her "get away"!  Goal for 2015: convince the Bruns family to move to Austin.

A few weeks ago, my parents came to visit our little Austinite family for a week.  Mom and I got to see Trans-Siberian Orchestra, which was full of complicated guitar and electric violin rifts, amazing vocals, pyrotechnics, laser lights, and creative stage scenery.  I do hope that we can make Trans-Siberian Orchestra a tradition.  Of course we did our usual baking cookies with my mom, dining at Z-Tejas, and visiting Santa Claus.

Andrew, Ellie, Sophie Dog, and I made the drive up to Plano, TX to visit Drew's side of the family for Christmas.  The car ride up there was very difficult since I haven't been able to drive more than 20 minutes due to my back, but Ellie was very chill in the back seat.  As opposed to her usually screaming after 2 hours in the car.  We had a really nice visit with my in-laws complete with Dunja's awesome cooking, Charles delicious pies, and movies!  We finally saw Gone Girl.  Mama Dunja and I had a hard time holding it all in since Drew and Papa Charles didn't read the book. We also got to see most of my nieces and nephews and one of my great-nephews!  The drive back was excruciating and required frequents stops and limping (sciatica sucks), but I do not regret making the trip.  In the Theurer household, nothing is more important that spending time with family.

We spent Christmas Eve and Christmas Day in Plano.  Ellie got a kick out of
Grandma Dunja  showing her the camera.

True to Ellie Bear form, 2014 is ending with a BANG!  Ellie was just diagnosed a few hours ago with Influenza A and an ear infection.  Girlfriend certainly knows how to ring in the New Year!

*The photos in this post are from: Breakfast with Santa at North Austin Mother's club, Holiday Party at Ellie's school, Lakeline Mall Santa, Christmas with my parents, and Christmas with Andrew's mom and step-father, et al.



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Dance Fashion According to Ellie Bear

I know that I mentioned back in October that the Ellie Fashion Series was going to be a monthly occurrence and then I managed to miss November.   I think that I need a continuous IV drip of coffee. Although, I love the taste of coffee so maybe I need a keg of Dunkin Donuts/Green Mountain?

Moving on! Ellie continues to entertain me and many of her followers on Facebook with her fashion ideas.  So it only makes sense that it carries over to her dance attire.

Behold the Ellie Bear headband-legwarmer-cowgirl boots costume!

Red cowgirl boots go with everything!

She really really really likes to jump.

I have no idea what she is so excited about in this picture, but doesn't she look adorable?

Seriously?  Who taught her to put her hand on her hips?!

Presenting: Ellie's Dance Fashion Sense over the years.

Add caption

Let us not forget her big television debut.

Finally, just a little bit of Live-Action-Ellie







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Ellie's Television Debut

Back at the end of March, I was in Wisconsin for my SIL's bridal shower.  That's right folks, be shocked that my baby brother found that special someone!

While I was away, I left explicit instructions that Ellie must arrive on-time to her dance class and that she MUST not wear pajamas.  The second one I was most concerned about.

You see, Ellie participates in a special needs dance class through the charity 2dance2dream.  McKenna Carr is 19 years-old and volunteers her time teaching children with various abilities how to dance.  This includes kids with spina bifida, cerebral palsy, autism and of course Down syndrome.  She knows sign language which is a pretty big deal! Ellie and Jack, who has tuberous sclerosis complex, happen to be in their very own dance class.

Ellie and McKenna
Contrary to what this pic shows, The Bear loves McKenna.
She loathes me taking pictures.

Because McKenna selflessly gives herself to others, she was nominated for a special award through KVUE's 5 Who Care.  Sheryl, Jack's mama gave an awesome interview expressing the thoughts that I was not able to share since I was in Madison.  Andrew, hid in the back.  Apparently, he is camera shy.  My daughter is not.


Here is the new segment: http://www.kvue.com/videos/news/local/outreach/five-who-care/2014/05/26/2457648/

Look!  no pajamas :-)
Bear stole the headband from awesome volunteer Elizabeth.
Thus began the birth of Ellie's headband obsession.

Camera shy that is.

Girlfriend flirted with the camera man like there was no tomorrow.  This means she only got a cameo on the news show because she was too busy trying to "help" film the class.  Jack was a freaking rockstar as you can see in the news video.

2dance2dream: The Recital

Back Stage

I have mentioned a few times that Ellie takes a dance class that is offered by the 2dance2dream program which is a part of the Legacy of Hope Austin Organization.  This program is for children with special needs.  Ellie and Jack participate in the program and over the weekend they had their dance recital.  Jack was a superstar.  Ellie, well let's just say Ellie was Ellie.  The good news is Ellie didn't attempt to crowd surf.

excuse the blueberries stuck in her teeth

There are several young ladies in the 2dance2dream that serve as volunteers.  Ellie has mastered the art of manipulating these wonderful girls into holding her during the dance.  It is a motor sensory thing for her.  By hold her, she gets to the movements of the dance.  She will wave her hands around and of course she claps for herself at the end.




An amazing thing occurred at the end of her dance.  Backstage after the dance, Ellie said "I did it!".  As I was in the audience, I didn't get to hear her first sentence however there were several witnesses.  I have not heard her say it since, but my mama bear heart has been beaming!

Of course, Ellie thinks nothing of dancing in the middle of restaurants, but dancing in a dance class NEVER!



I am apologizing for the lack of blogging.  I have two torn discs and vertebral degeneration in my lumbar spine.  Sitting exacerbates the pain.  I tend to sit to type the blog.  So, my poor neglected blog!

Shake It, Baby, Shake It

Ellie would like to announce:

Legwarmers are totally in vogue.  They should be worn with cowboy boots.  Because that is what a Texan girl does.

I have mentioned before that Ellie is in a dance class that includes children with special needs.  It should be noted that while she loves this dance class, she does not actually dance.  In fact, she expects to be held like a little princess while the person holding her royal highness dances [I have a video proving this but I forgot to ask the teacher's permission to post].  I kid you not.  Well, she will dance, provided there is a camera man present--more on that later.

Yet, Boom-Boom thinks nothing of shaking her booty in the middle of a restaurant.  In front of strangers.  While shouting "dada dada dada".  Because that is what The Bear does.  The only reason she stopped dancing is because another family of frequent flyers entered Noble Sandwich Company (aka The Noble Pig) and she had to greet them.




Oh Bear. . . you are ever the Diva.