Changing the Face of Beauty and #IMREADY

Something big is on the horizon for 2015.  In November, this beautiful little peanut appeared in Target's catalog.  So many people are talking about how lovely this little girl, Izzy Bradley, is playing with that large B toy.  What if more retailers were to feature children with different abilities?  

Changing the Face of Beauty is a campaign aiming to recruit 15 major retailers to feature people with disabilities in their advertising during the year of 2015.  YOU can be a part of this!  

How? Go to the Changing the Face of Beauty's Facebook page to share a picture of your loved one and tag with #IMREADY #changingthefaceofbeauty.  You can share your picture or the Changing the Face of Beauty campaign on other modes of social media--Instagram, Twitter, Google + or  on your personal Facebook page.  Be sure to tag some major retailers that matter to you in your post.

This campaign is already working for in an ABC News article, Infantino Toys states " "We are committed to using models that reflect the same diversity you see on a playground. Check out our Facebook page to see our cutie cover model, who is rocking her extra chromosome." 

infantino's Facebook cover.  She is quite the cutie patootie 

Continue to spread the word so that more retailers like Target and Infantino "reflect the same diversity that you see on a playground" !

I don't know about you, but Ellie says "Hey Kohl's and Gymboree, #IMREADY for change.  We want YOU to include models with disabilities in 2015.  We want YOU to be part of the #15in2015 . 15 retailers including models with disabilities in 2015.  We know you see us.  Represent us."



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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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PiYo: A Review of the 60 Day-Program

On September 15th, I restarted the PiYo Beachbody Workout program plus Shakeology after quitting after just a few days in July due to a hamstring injury (this was related to a fall and not to working out.

A few weeks ago, I completed the 60-day program plus Shakeology.  Here are my thoughts on the program as well as my results.

WHAT IS PIYO

Piyo is a fusion of pilates and yoga.  You move through the poses quickly to achieve a great cardio workout while using your own body weight to build strength.  As seen with yoga, you will also improve your flexibility and your balance.

A PiYo Challenge Pack includes:

• 9 different workouts - these workouts range are typically 20-30 minutes long
• A meal guide with recipes
• 30-day supply of Shakeology-vegan and regular flavors, a nutrient dense meal
• Access to a small Challenge group on Facebook that includes support, health tips, recipes, and accountability

What you will need: enough space to take a large step to each side-about the length of a coffee table.  A yoga mat is optional, but I prefer to use a super think 3/4-inch non-skid mat that I bought off Amazon.



WHAT FITNESS LEVEL

I know that some of these moves look difficult, but do not think that PiYo isn't for you!  When I started, I was a bit intimidated until I watched the introductory workout.  Chalene Johnson, the instructor goes through each movement teaching correct alignment.

Truth: I am only able to do the PiYo Flip on this side only.

PiYo is ideal for any age group and for any fitness level.  I have customers in their 60s.  I have people who have never workout before and people who have been killing it with Insanity and P90X. If you have never done yoga or pilates, that is okay.  There are modifiers that you can follow until you can move on to the regular and even more advanced moves.

Prior to PiYo, I could barely hold an unmodified version of side plank.

PiYo is also great for people who already practice yoga and pilates.  Chalene Johnson demonstrates how to make the movements more advanced.  Remember that this is a fusion of the two and you will get a very different workout than if you did yoga or pilates alone.

You work all major muscle groups with this one move. 

Joint Injuries and Arthritits
I was really worried about my ability to do this program, but I needed something that was low impact for my arthritis.  As many of you know, I have two herniated discs in my lumbar spine, spinal and hip arthritis, and sciatica.  I have tried several treatments and believe it or not, each of my doctors recommend core strengthening exercises.  PiYo will indeed give you super strong abs of steel!

With the arthritis, I made sure to modify some of the poses to prevent hyperextension of my back.  A few of the modifications that I make are shown below.

As will all of my workout programs, I drink my all-natural Shakeology for breakfast or for a post-workout meal.  Occasionally, I'll have a second one for dessert because it is that good and I have lots of late-night comfort eating issues.  Knowing that I am feeding my body with essential vitamins and minerals, Omega 3 fatty-acids, phytonutrients, proteins, fats, and complex carbs contributes to my ability to workout each day.

I love all of the different recipes for Shakeology.
It is like having a different breakfast every morning:
Thin Mint, Chunky Monkey, Mocha Dream, Salted-Caramel, Chocolate-Covered Strawberries. ..

MY RESULTS

I lost 5.5 lbs bringing my 7-month weight loss to a total of 26 lb. I also lost a total of 5.5 inches (my body seems to like the number 5.5) from a combination of my chest, waist, hips, arms, and legs.

My arms, abs, upper back, and legs are now very strong and toned!  I really started to see muscle definition around week 2 and continued to firm up throughout the whole program.

My endurance, strength and flexibility are better than when I was a dancer during high school.  I never ever thought I would get that flexibility back.

Joint pain: this is amazing!  Of all the things that I had tried--steroid shots, physical therapy, ice/heat, medication, and TENS unit, the one thing that has helped my back and hip the most was/is PiYo.  The Lower Fix and Sweat are my go-to workouts now when my back is bad.  It is amazing how all of that medical intervention couldn't bring me what PiYo could!

Hamstring Injury:  My hamstring had slightly atrophied from the injury and my strength was shot.  My flexibility, nonexistent.  After the 60-day PiYo program, my hamstring is much stronger and I have gotten some of my flexibility back.  I don't think I will even have full range of motion back, but I did get most of it!

So many ways to stretch, sculpt, and build leg and butt muscles

MY OPINION

If you are looking for something that is high impact like Insanity or T25, this is not it.  This is low-impact.  It is about as low impact as you can get.  Some of the workouts seem to be more strength and flexibility oriented than cardio.  I would say that of the 9 workouts, about 4 of them are cardio which was something I didn't really expect.  All of the workouts get your heart rate up, but those 4 are truly, full on, cardio.

Working on those abs of steel!

Since I had done yoga before, I thought that the Lower Define was easy.  The rest were challenging so don't be fooled by that Lower Define!  As I was doing Upper Define and Sweat, I thought they weren't too hard, until the next day.  You do use muscles that you never thought you had and those muscles will be toned.

You will only get out of it what you put into.  In any workout program, you have to push yourself!  That also includes keeping your eating in check which is why I like the meal guide that comes with the PiYo and of course my Shakeology.  You do need to do your workouts 4-6 x a week (the program guide calls for 6 days a week, but I like to take more rest days) to really get the results.

Even my daughter enjoys PiYo.
Every morning she rolls out the mat and practices
her own version of the moves.

WHERE YOU CAN LEARN MORE

To learn more about PiYo or any other Beachbody workout program or if are interested in a FREE coach who will help you develop goals and work through your struggles, you can contact me at:

annatheurer@beachbodycoach.com

To learn more about my monthly fitness challenges, the free accountability group, health tips, and meal and Shakeology recipes, visit Anna Theurer Fitness & Well-Being Facebook page.

To read my thoughts on Shakeology, check out my Shakeology Review blog post or contact me at the email address above to learn more or get the ingredient list.
(pssst, did you know that Ellie likes her chocolate shakeology with peanut butter and bananas?)

Check out my coaching buddy, Sonomi!  

My next Challenge Group will start just after the New Year on January 5, 2015.  A perfect beginning to the New Year and a perfect way to knock out those New Year's resolutions!  If interested, be sure to contact me so that I can answer your questions and get you all set up for the Challenge as with the delayed mail due to the Holidays, you will want to order soon to get your program in time.

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Sleep Deprived

"Just imagine how much she could learn if she got this amount of sleep each day." These are the words that I hear from Ellie's teachers, therapists, and from my own lips.

All bright-eyed and bushy-tailed in the early morning.

It breaks my heart when I see my daughter struggle.  She is very clever and determined and wants to learn.  Yes, she has ADHD that is mostly managed by Tenex and Adderall.  The stuff really works. . . provided she has enough sleep.  She is not getting enough sleep most days of the week.

Like adults without enough sleep, kids are cranky and irritable. However, the biggest differences which are the most detrimental to my daughter's functioning at school and in home are:

Sleep deprivation breeds sleep deprivation and sleep deprivation leads to increased impulsivity, hyperactivity, and inattention.  

All of which are signs of ADHD.  In fact, on days that Ellie does not get at least 8 hours of sleep, it is as though she didn't get any of her ADHD medications.  Actually, it is worse because she is so agitated.  There are meltdowns at home and at school.  Running away from the teacher.  Unable to sit still and well, just sit in general.  Grabby of other kid's clothes and food.  Essentially, my daughter cannot function.  At all.

Actually, I am unable to function!  I am exhausted and forgetful.  Some days, I feel as though I am losing my mind--like when I left the new camera at the restaurant or when I couldn't find the scissors which I apparently put in the drawer with the measuring cups.   I am just want to crawl back in a hole and lay in the fetal position.  Sadly, I cannot do that no matter how much my sleep deprived brain and body beckon me to.

This would be me on most mornings!

Summary of Ellie's sleep patterns:

Actually, there is no pattern.  Two to 4 times a week, Ellie wakes up really early and typically does not fall back asleep.  By early, I mean waking up for the day sometime between 12:30am-3:30am.  It can happened 2 days in a row, or every other day, or 2-3 days between episodes.  It happens on school days, weekends, and vacation days.  This all happens even with a good bedtime routine, white noise, blackout curtains, and a consistent, regular bedtime.  Her sleep issues are only related to waking up ridiculously early and do not involve falling asleep.  She is happy and she plays, in the dark, with her blankie, books, and stuffed princess dolls that she is allowed to have in her bedroom.

Ellie wanting to be carried into the house after
getting off the bus.

Here is what has happened in the last 1.5 months since my last sleep post:

As per the Neurologists orders, we gave Ellie 3mg of melatonin before bed each night.  This dropped Ellie's early morning wakings from 3 x week to just once a week.  This only lasted for 2 weeks. Maybe it was a fluke or many she just built up tolerance that quickly because after those 2 weeks, she returned to waking up at 2:30am at 3 times a week.

We then bumped up the melatonin to 6mg.  We gave this some time and sadly, did not see any difference.  At all.  I was really hopeful that the 6mg of melatonin would do the trick.

As we waited to hear back from Neuro (seriously, it takes days to hear back from this office), Ellie developed a new talent--turning on her bedroom light.  The first time it happened, I just assumed that in my sleep-addled state,  I forgot to turn the light off when I checked in on her.  By the 3rd night, we caught Ellie reaching for the light switch by standing on her pillow.  At that point, we started to turn off her light via the fan chain.  Unfortunately, she witnessed this and started to build a mini-tower out of pillows and stuffed princess dolls on her bed to pull the fan chain herself.  Andrew remedied this right away by removing most of the chain so that just 1.5 inches is left hanging.  Do you know what this means?  Now I have to climb on top of the bed to turn Ellie's light on and off.

Taking a short rest during dance class

After not hearing from neurology for several days, I got a text from CVS stating that "Ellie's prescription is ready for pick-up".  I mistakenly assumed that it was the auto-refill on her Tenex.  As it turns out, Neuro decided to start Ellie on 100mg of Neurontin and then increase it to 200mg after 1 week.  It was in liquid-form.  Ellie does not do liquids.  She does pills.  They would know this if they had talked to me first or even, *gasp* looked in her chart. Still, it would be a small amount of liquid and I figure I could get it into her.  I think it is interesting that I learned Neuro's plan of care through the pharmacist.

Can you believe that 2 month-old Ellie slept better than 5 year-old Ellie?

I would love to tell y'all that the Neurontin was/is awesome, but I cannot.  I have been tracking Ellie's sleep for months now and I could tell no discernible change in her random early morning parties.  They still occurred 2-3 x week and usually with those awakenings anywhere from 12:30am-3:00am.  Occasionally, she would fall back asleep around 4:30/5:30am and sleep for another hour.  One thing that I did notice, was that on some nights, she was taking longer to fall asleep.  It wasn't every night, but it was new.  One night, she didn't fall asleep until 6am!  That when when I put the call into Neurology and proclaimed that "this is not working!".  I spoke with a nurse in great detail about how there are NO changes in her waking up, but that I am concerned the Neurontin is affecting her ability to fall asleep.  I hear nothing . . . for almost a week.  During the course of that week, I was weaning Ellie off the Neurontin.

This is the "I am so tired that I will have a meltdown in just a minute" look.

In the meantime, Ellie had a follow-up with ENT.  Just a routine thing, but I mentioned The Chunky Chicken's sleep issues with Dr. Z. I got an immediate referral to a pediatric sleep specialist. Ellie's appointment isn't until mid-January, but it is better than nothing.  While I do believe that most of Ellie's sleep issues stem from her ADHD brain activity, it would be good to rule-out other issues such as sleep apnea, seizures, and all sorts of other things that can contribute to insomnia and early wakings.

At the advice of a few friends, we are also looking into Ellie's diet to see if there are trigger foods, considering the addition magnesium supplements, and also researching essential oils.

I wish I felt this chipper in the morning.  

Of course, the day before I plan to completely discontinue the Neurontin, I hear from the neurology nurse.  We are to increase the Neurontin to 300mg x 3 days with a final increase to 400mg.  Um, right.  I said "even though it may be causing her difficulty to fall asleep too?".  As usual, Neuro brushes off my worries and acts like I am making stuff up or "don't understand".  I find it very annoying seeing as Ellie is being treated for ADHD by a pediatric NP and I used to work as a pediatric NP who also managed kiddos with ADHD.  Of course, I have no idea what I am talking about!

The good news is: I got the 400 mg in capsule form.

Sincerely,

Going Batty In Austin


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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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Updates: GI and Liver, Back Arthritic Pain

It feel like it has been a while since I wrote a good update on everything that has been going on in the Theurer household. Believe it or not, the reason it has taken me so long is because things are going well and the worry is mostly gone.

Contrary to what it looks like, Ellie is not picking my nose!

ELLIE'S GI UPDATE:

In October, Ellie got moved from twice monthly appointments with the Gastroenterologist, to once every 3 months!  At the last visit, we reviewed all of Ellie's lab work-thyroid panel, metabolic panel, celiac screen, CBC, lead, vitamin D, and a bunch of IgA stuff.  All of which was thankfully normal!  However, she had continued to lose weight.  I requested an Upper GI in hopes of officially ruling out celiac disease, which is something that is more common in people with Down syndrome.  The blood tests can come back as false negatives or false positives repeatedly so the upper GI is the gold-standard for a definitive diagnosis.  The GI doc agreed that if she is still losing weight in 3 months, he would do the Upper GI.

The Good News:

Bear started to eat!  A LOT!  Like 2 croissants, a cup of raspberries, and a zone bar in one sitting.  She has even eaten breakfast a few times.  We still have days where she may not eat more than 200 calories, but they are few and far between.  I am going to have my Chunky Chicken back!

We seem to have a successful bowel regimen for Ellie.  We are continuing with the Miralax and are administering senna for 2 weeks on and 2 weeks off.  Senna is a stimulant laxative, as opposed to osmotic, so the bowel can become dependent on it.  This is why we do not do it everyday.  I was really worried that a full 2 weeks on would trigger dependence, but she seems to do fine on the off weeks.

Liver Scare:
Just when things seem to be going along fine, Ellie freaks us out.  For 3 weeks, Ellie's stools were super pale.  Think flesh-colored.  Clay-colored and white stools can indicate a problem with your bile duct or production of bilirubin.  Bile is used to break down fats and gives stool its brown color.  A liver or gallbladder problem can present as pale or white stools.  After a full on liver panel and an abdominal ultrasound, we learned that Ellie has abnormally small, but normal formed kidneys.  Her blood work came back normal and her liver, spleen, gallbladder, and pancreas were normal!

We do not know why her stools were they way they were, but I am positively relieved that she doesn't have any liver problems!

MY BACK/HIP PAIN, ARTHRITIS, SCIATICA, AND HAMSTRING INJURY:

Back in July, I managed to tear my hamstring and obturator externus by falling a whopping 6-inches to the ground.  I was on crutches for about 3 weeks and in some serious pain.  My back pain, which had been improving, took on a downward spiral after this injury.  I felt like I was back to baseline, but this time with the posterior of my thigh and groin on fire.  My Dr. K had me do a trial of Neurontin to help with nerve pain.  Let's just say that it really does help with nerve pain, but it can also headaches, fatigue, and dizziness.  I found myself with an incapacitating headache and nearly passing out.  I tried to push through and see if the side effects would subside, but they did not. Needless to say, Neurontin was not a good fit for me.

It was finally determined by my physical rehab doc that I would need a 2nd opinion (good thing I already had one lined up!).  There was pretty much nothing more that he could do (already tried pain management, TENS unit, PT, steroid shots, chiropractic care which made it worse).  As a farewell gift, he placed a steroid shot into my right sacroiliac joint and another into my ischeal tuberosity bursa--think the top part of the hamstring near your butt.

Miracles do occur!  I was told that the SI shot would probably do nothing as only 1-3% of people with back pain have it stem from their SI joint.  Um, he was wrong.  I had searing nerve pain all the way down to my toes when he injected the steroids.  To me, this means it worked.  My pain improved in a matter of 5 days.  My bursa shot freaking cured my hamstring immediately.  I could walk!  I have lost a lot of hamstring strength and flexibility and I am struggling to regain it. Honestly, I wonder if my hamstring will ever be back to where it was before my fall.

A few weeks later, I met with Dr. S, a neurosurgeon.  He reviewed my MRI and said he saw the following:

Compressed discs with herniation into the spinal column L4-L5 and L5-S1
Connective tissue tears in the disc L4-S1
Bony deformities and enlargement of the lumbar facets joints L3-S1 (aka facet hypertrophy)
Minor nerve impingement due to the enlarged facet joints decreasing space for nerve movement.

At this point, I do not need surgery.  Whoooohoooooo! Actually, for my issues, there isn't any type of surgery that would help me.  I sort of figured this and I didn't think my pain and activity limitations were severe enough for surgery anyway.  If I start to have significant nerve problems, he can file down my facet joints.  Oh fun. He also told me that I will always  have pain and it will get worse as I age. He is just full of sunshine and rainbows!  Dr. S did say that since the herniations are acute injuries, the pain from that will subside in a few months.  Until then, I am to build up my core muscles through pilates.  Good thing I have been doing PiYo.  Abs of steel, baby.

My favorite stretch for my hip flexors

I just completed the 60 days of PiYo which is a combination of pilates and yoga.  The Lower Define workout really helps my back and hip.  The Warrior poses and Pigeon bring the most relief.  I am able to sit for longer periods.  For the last month, I have been able to drive Ellie to her horse therapy and dance class without excruciating pain.  I am very functional most of the day, but then I am pretty sore by the evening.  At night, I have a hard time sleeping.  Still, I am much happier, stronger, and less depressed.

Addendum: November 18, 2014
I think I jinxed it all by writing this post.

For the past few days, my back has not been all that great.  I am super stiff in the morning.  As the day goes on, it starts to hurt so that by bedtime, I have trouble sleeping due to pain.  It is not unbearable, but it is enough that I put a call into my Physical Rehab doc.  I imagine it will be several days before I hear back.  Until then, I am having lots of intimate relations with my ice pack.

Most likely because Ellie is eating again, she is all backed up.  We double her Miralax dose at the end of last week.  Exciting news: the last two days, Ellie requested to sit on the potty!

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Awareness to Acceptance: discrimination by a Bath and Body Works employee

In October, many of us with children with Down syndrome promoted awareness.  Yet, I believe that most people are aware that there are people with Down syndrome in the general population.  Are there still misconceptions, yes.  Because of this, we need to shift our focus to acceptance.

Discrimination towards those with special needs is still running rampant.  Whether it be calling them r*tarded, bullying them in school, not making public places handicap accessible, denying childcare to my daughter, or refusing to service customers who have special needs, discrimination still exists.

Sadly, these incidents are rarely reported in the news.  They take a back burner to discrimination towards those of a different race, gender, or sexual orientation.  Yet, those with special needs are often unable to stand up for themselves and those who do, are rarely heard and taken seriously.

This little girl has ALREADY faced discrimination based off her having Down syndrome.

This past week, an employee at a St. Louis Bath and Body Works in a mall refused to allow a life skills class into the store (Guess what? I actually worked at this mall as a teen) claiming that it would affect their sales percentage. There are so many things that I can say about this:

1. The employee was discriminating against those with special needs.

2. What is different about people with special needs being in the store not buying anything vs. myself being in the and not buying anything?

3.  Why did she assume that the students wouldn't purchase anything? Life skills teaches just that, skills needed to navigate society--this involves learning what things cost and how to pay for them.

4. She is not a corporate owner, nor does she earn an commission so why should she care about sales percentages? (or maybe it is corporate culture where she must keep a certain percentage of sales to keep the store open?)

5. Why isn't compassion inherent?  Why isn't it embedded into our hearts?  Why must it be taught?

I do not know the answers, but what matters is that she passed judgement on a group of people without warrant.  All because they are different. She made a judgment of her own, not the company, to refuse service to those special needs.  She made assumptions and was ignorant.

Was she is in the wrong?  Yes.  Was she ignorant?  Yes.  Would better training and education help?  Maybe.

A few good things:

This story made the news.  While I wish that this incident never happened, the news actually thought this was worthy for the public to read.  The journalist was appalled by her behavior.  One can hope that by bringing light to this incident in a public forum will show others in society that discrimination towards those with special needs is wrong.

Bath and Body Works took immediate action.  Rather than ignoring this incident or giving a half-*ssed apology, a sincere apology was made as well as a plan to implement employee training to prevent this from happening again.   Sadly, this was the 2nd incident at a Bath and Body Works store (there was one in Alabama in March) in less than a year.  Why didn't they implement training back then? None the less, the apology both times was swift, which I didn't see with the murder of Ethan Saylor.

I will never stop advocating.

I am frustrated, angry, and sad that these things still happen to those with special needs.  It breaks my heart that my daughter, Ellie, will have to face this horrendous discrimination throughout her life.  That she may be bullied in school, made fun of in public, and now, denied a chance to even shop or learn how to live on her own! How can I help my daughter to become independent and contribute to society when society will not allow her to learn the tools to do so?! So while it is all fine and good to promote awareness, we need to obliterate common misconceptions that start as a fetus all the way through adulthood, but to also teach what it means to accept those who may be different from us.

While I may be tired of fighting, I will never stop.



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