A Tough Past Two Weeks

With a birthday comes annual tests, evaluations, and doctor's appointments.  Since last Monday, my bright, energetic, happy daughter has become a cranky, tired Toddler Bear with separation anxiety, stranger anxiety, and anything-resembling-an-office anxiety.

Here is an update on Ellie's health and let's cross our fingers that tomorrow big ECI annual evaluation goes better than the past 2 weeks.

BTW, a whole year has passed and (knock-on-wood) Ellie has never been sick.  Here is my theory:

Sharing Toys.  That ball is Sophie's.

12 Month-WCC:
Ellie Bear is doing very well.  She gained one pound in the past 3 months (a little less than expected, but Dr. N is not concerned since Ellie is Little Miss Active) and she physically looks fabulous.  She is very slightly behind on the gross motor skills, a little more behind on fine motor & speech, and a little more so behind on the cognitive skills.  I expected and suspected as much, but it is still crushing to hear that your child is behind on everything.  Speech therapy has been recommended and she got her 5 shots.  Ouch!  She was a superstar through the entire exam and did great that night.

Stats:
18 lb 3 oz  = 70% on DS chart, 10% regular chart
27.25 in = 70% on DS chart, 5-10% regular chart

Laboratory:
Celiac's Disease Screen = negative :-)
Thyroid Screen =  negative :-)

We frequent to Dell's Children's Hospital for the blood work since Ellie has roley-poley veins and fat chunky-monkey rolls.  Their lab is excellent at getting the blood on the first stick.  The tech got into the veins right way.  Yes, veinS as in 3 of them!!!   The tech would get some of the blood needed and then the vein would roll or collapse so she would need to tap into another vein.  Bear-Bear's arms were black and blue in the creases of her elbows and it hurt me as a mother so bad to look at them that I dressed her in long sleeves.

Cardiology:
This past Monday it was time for our annual exam with Dr. Holt.  Ellie had (yep had :-) a hole between the upper two chambers of the heart.  This is called an Atrial Septal Defect.  Hers was specifically called a PFO or Patent Foramen Ovale.  This is a hole that is present in fetuses and then closes at the time of birth.  Ellie's did not close and it was preventing her from going deep-sea scuba diving and flying a fighter jet.  Anyway, we did an EKG to look at her rhythm and an Echocardiogram (ultrasound of the heart).  I distracted her with rice cakes.  She did fabulous!  They got all of the pictures they needed of her heart.

Results = the hole is fully closed and we do not need to ever visit Dr. Hold again!  Yes, Dr. H is nice, but that is one more doctor for us to check off our list.

A Happy Smiling Bear

Physical Therapy:
Yesterday was PT.  We have been using an outside source (as in outside of ECI--long story on them being stingy with the services) for physical therapy.  It is very costly even with insurance so we do not go frequently.  Our therapist Cindy and I have worked out a deal where she teaches me a bunch of exercises to do with her daily and then we only need to touch base monthly.  It works great and we have seen so much improvement over the past few months since working with Cindy.  Super Bear!

Yesterday's session did not go well.  Actually, it was disastrous.  I cried afterwards.  Ellie was awesome in the waiting room.  When we went back to the therapy room with Cindy and the door shut, Bear turned into a panicked, frenzied screaming machine trying to crawl up my body.  Cindy and I have never seen her like this.  Who was this possessed child?  Ellie would not cooperate for any exercises so Cindy showed them to me by doing them herself. She also showed me how to use a soft brush on her arms and legs to help with proprioception. Ellie screamed and had big crocodile tears the whole time.  Cindy then leaves to print out some pictures and notes for me to take home.  While Cindy is gone, Ellie laughs, babbles, and plays with the toys in the therapy room.  Cindy comes back in and, you guessed it, screams.

Needless to say I am a bit nervous about tomorrow's ECI evaluation.  Jan will be here with another therapist to reassess Ellie and to formulate new goals.  What if Ellie screams again?  Also, I am prepared to battle.  I want speech therapy but ECI is very spread thin right now with providers.  They always argue with me that Ellie is at least "making noises".  Uh, okay.  So Ellie is behind, but not behind enough.  To me, it doesn't matter.  I do not care that they are spread thin, I care about Ellie and I will fight to get her the services she needs.

Heart Warming Letters

Andrew and I would sincerely like to thank everyone for their support with the upcoming Buddy Walk.  Please remember that October is National Down Syndrome Awareness month. It scares me to think about all of the misinformation out there.  Did you know that up to 92% of Americans with +fetal DS diagnoses choose to abort?  We chose Ellie, she chose us for her parents, and we cannot live without her.  It hurts me to my soul to think that others in our shoes would not have chosen little Ellie Bear.  Thank you God for blessing us with such a sweet and wonderful child!  Thank you everyone for your support and love!

On a side note, I received this from a friend of mine who is a speech pathologist.  It is circulating among the different Texas school districts.

This is a letter written by Gracie's Aunt:

Friends,

I want to share a true story about Gracie.

She was born with Down’s syndrome. At 3 she was diagnosed with Leukemia with little chance of survival.

Half way thru her cancer treatments she died….for 20 minutes.

Once revived, she had severe brain damage and was unable to move. She could not finish the cancer treatments. We did not think she would ever be able to even smile again. We feared the Cancer may return.

Presently, she cannot stand or walk, nor feed herself. She cannot speak. She is dependent on loving attentive family and caregivers.

But she can smile! And she shines with uncompromising Light.

Gracie attends a class AA Texas High School with over 3200 students. 800 in her Senior Class.

She was selected as the representative for her Life Skills Class for Homecoming court, along with dozens of other nominees at the school. FFA, Science Club, Cheerleaders, Debate Team, Drama….over 45 were also nominated and honored by their respective groups.

A week ago Friday, Gracie was honored again and selected to be 1 of 6 Homecoming Court members. That was an amazing night. My brother’s (Gracie’s DAD) perspective is attached. Please scroll and read his emotions as the entire crowd roared to welcome Gracie to the top 6.

Last Friday night, Gracie dressed for the game and Homecoming ceremony in her pink tights, sequenced high top tennis shoes and beautiful dress.  My brother rolled his 18 year old daughter on to the field between ROTC swords, swirling flags and thousands of cheering students to hear the final vote for Homecoming Queen to represent Georgetown High School .

“GRACIE KILTZ" ……………and thousands did what Gracie will never be able to do.

 They stood and clapped and cheered for their Queen.           

 And she smiled.

What a truly beautiful and engaging smiles. She just makes you want to smile right back :-)

From Gracie: 


If I could speak, these might be my very words….to the students of GHS

I was blown away Friday night when you chose to crown my friend Jared and I as GHS’S  Homecoming King and Queen. One thing you might now know is over 15 years ago, my heart stopped beating for 20 minutes and left my body broken and my brain injured. None of the doctors believed I would live much less ever smile again. So when God chose to give me back my smile I knew I would always have to share it with who ever was nearby. 

When you grow up different than most kids in the world, you begin to adjust and understand those differences might not ever be accepted or celebrated but even less likely to be honored. Jared and I have never been recognized as we were on Friday night. We will never forget what it felt like… the lights, the band, the thousands of students cheering us on; it was our first true moment of acceptance and love from everyone collectively. Even if I could speak I would never be able to fully express or  think you would fully understand the significance of what you did. When my name was announced I felt the magnitude of God’s love for me through the choice that you made.

You chose to honor Jared and me in a way that we could never have attained or accomplished on our own. You looked beyond our weaknesses and differences to sweetly bless us in a way that was more a reflection of your character than anything else. This past Friday, GHS stood out in a way that will be remembered for many years to come not only by Jared and me but by everyone who witnessed it from the stands. GHS you set an example for the younger generation that could only wonder why you didn’t pick the most beautiful or most popular girl and guy. Your vote might begin to teach those younger to place value on all people no matter whether they are able to attain straight A’s  or just give the gift of a smile. I ask that each of you will continue to go out of your way to interact with students like us….we crave that encouragement from you! Don’t worry how we respond, it will probably be different than what is comfortable but don’t stop…you make us great! Peer Buddies you truly do lift the students of CBI  high on Eagles Wings…thank you for choosing to hang out with students like us. 

And finally  to my teachers….thanks for always believing not only in me but also in every “special” student in CBI. Without each of you and your contagious love, this would have never happened. Your daily patience with each of us keeps us striving towards  reaching our God given potential. 

Next time you look up into a night sky, I want you to think of each heart at Georgetown High School and know that Friday night your hearts shone brighter than any of the stars!

Proverbs 13:12 says “Hope deferred makes the heart sick but a longing fulfilled is a tree of life.Georgetown High School is a tree of life not only to Jared and I but to every “special” student. 

With a smile,

Gracie Kiltz

Reminder: Team Ellie Bears Buddy Walk

Hello friends & family,

Thank you to everyone who has shown their support towards Down Syndrome Awareness and Team “The Ellie Bears”!  Andrew and I truly appreciate your time and your generosity. 

This is a friendly reminder to register for the Buddy Walk if you have not done so already.  If you would like to donate towards Team: “The Ellie Bears” follow the link below.

http://www.active.com/donate/buddywalk10/ellietheurer

On Sunday October 24, 2010 from 12:00pm-4:00pm, my husband, daughter, and I will join hundreds of others at the Reunion Ranch in Georgetown to bring about awareness and raise money for the Down Syndrome Society of Cental Texas [DSACT] by walking in the Buddy Walk.  By joining our walking team or making a pledge to “The Ellie Bears”, you are supporting the acceptance and inclusion of people with Down Syndrome. 

It is not necessary to walk the entire mile or to gather pledges.  It is an excellent event for those who have children as there will be a Joe McDermott concert, farm animals, hayrides, and other activities.  A short video listing the different activities for adults and kids as well as maps with directions can be found on the DSACT’s website at http://www.dsact.com/DSACTbuddywalk.html

To register for the walk:

1. Go to http://www.dsact.com
2. Click “Register Online”.  This will bring you to the Active.com website
3. Click “Join An Existing Team”
4. Select “The Ellie Bears”

Advanced registration is $15 per adult & $5 per child and includes Buddy Walk T-Shirts.  Registration on the day of is $20 per adult.

If you would like to make a donation and do not want to join Active.com or donate on-line, you may make checks out to “Anna Theurer” with DSACT in the memo.  I will mail you the Tax ID receipt.

As I have never been to Reunion Ranch, I do not know of a good place to meet so please look for a sign that says “THE ELLIE BEARS”.

The Theurer family thanks you in advance for your support.  Please contact me with any questions or comments about the Down Syndrome Buddy Walk.  I can be reached at (512) 401-0053 or at anna.theurer@gmail.com.

You are more than welcome to circulate this letter to friends, family, coworkers, and neighbors.  Any help is much appreciated.

Sincerely,

Anna, Andrew, & Ellie Theurer

The Ellie Bears

The Tooth Monster

It is official!  My baby is a toddler!  The Ellie Bellie Bear-Bear had a pretty good 1st birthday.  Well, it was a bit rough and tiring in the morning.

1. Her first tooth broke through the gum!  (The second broke through today)
2. She had developmental therapy in the morning.  She was so worked up and tired during ECI that we had to cut the visit short so she could nap.  Jan, the therapist, was super proud of the Bear's progress.  She was so impressed that we only modified a few of our current exercises.

When Ellie woke up Thursday, Andrew and I both went into her room singing "Happy Birthday". She was very excited to see both of her parents but looked a bit confused by our singing.  Andrew took off work a little early so that we could celebrate with the Bear-Bear.  Ellie had a snazzy little hat and a fancy dress from Hawaii (courtesy of Megan and Matt).   Here are some photos from her "Big Day".

Andrew was the goofy one.  He put the pants on her head.

I made this quilt for the Bear-Bear using her old receiving blankets.  

Sugar Coma (and not a big fan of the hat)

Remembering The Past Year

September 16, 2009 

IT'S A GIRL! Nadja? Marie Theurer at 6lb 10oz

My friend told me that she looked like a baby Mother Theresa

It's Official. . . Ellie Marie Theurer

aka Ellie Bellie Bear

Ellie Bear-Bear

Chunky Chicken

Chicka-Chicka-Boom-Boom (please review a Chuy's menu)

Ellie Bellie Bear-Bear of the Bearity Bears

2 Weeks Old

I already had my little darling decked out for Halloween. A Tama Boo Kitty!

1 Month Old

The famous hat!  

2 Months Old

Snuggle Little Ellie Bear

3 Months Old

Apparently the Holiday Season really wore out our little reindeer.

4 Months Old

Someone was feeling pretty spunky at 4 months.

5 Months Old

Rock-A-Bye Baby

6 Months Old

Ellie Bunny!  

7 Months Old

So Happy!  Big Smile! 

8 Months Old

Wee!  I love swinging!

9 Months Old

Swimming swimming in a swimming pool.

Ellie Mermaid

10 Months Old

The ever fashionista.  Yes, another hat :-)

11 Months Old

Fiesty

Cave Ellie!  Returning her "spoils" to the clan of the Sophie Dog-Bear.

~12 Months-Old

Because every toddler needs a tu-tu

Ellie Ballerina

What is our dear daughter getting for turning 1 year-old you ask?  Her 1st two teeth!

http://www.active.com/donate/buddywalk10/ellietheurer

A Week of Celebration: Part 2

On Monday morning, we attended a very exciting play-date.  My dear friend Angelika invited us, along with Jess & baby Grace to her house for a "Beary Special Birthday" in honor of Ellie Bear.

Little Haley and Jaden answered the front door where Ellie and I walked down the "Bear-foot path".  The kiddos colored paper bear paws and taped them to the floor.

Here is what the fire place looked like:

Yes, Ellie is eating the decorations.

The Birthday Gang: Grace, Haley, Jaden, & Ellie

Yum!  Look at all of these cupcakes.  All mine!

(okay, I made special ones for her given her interesting oat allergy)

No she is not afraid of fire.  She is afraid of my singing voice.

Must have cupcake.

Hum, I have never tasted anything like this before.

Wow!  This is amazing!!!

Maybe I will fit the whole thing in my mouth.

More boxes and paper?!  What a wonderful day :-)

A Week of Celebration: Part 1

Ellie's birthday is this upcoming Thursday.  I cannot believe a year has almost passed!  Every one always tells you that it goes by quickly and these people are indeed correct.  Tear tear, my baby is going to be a toddler.  Wah!

Andrew and I feel so blessed that God has chosen us to be Ellie parents.  It is amazing how much love a heart can hold.  It is amazing how much Ellie has accomplished these past 12 months.  It is amazing how much a little girl can change people's lives.

The past weekend we hooked up our webcam and Skyped with my parents in St. Louis.  They wanted to see her open their present.  Here are some pictures.

After removing the bow, Ellie decided to climb right over the box to reach her set of toy keys.  Looks like she thought the gift was just another part of her "obstacle training".

The wrapping is always more exciting than the present :-)

Yay!  Big girl standing!!!

Leap Frog Table.  Thanks Awa Grandma & Grandpa!!!

A little preview of tomorrow's posting:

A "Beary Special Birthday Playdate" hosted by my dear friend Angelika.

Ballerina Girl

As many of you know, my little baby is going to be a toddler (gasp!!!) soon.  My dear friend Maria made sure that Ellie would be well-dressed for her upcoming birthday. . .