The Bear is Back!

A kind soul reached out to me the other day offering words of encouragement and it made me realize that I have neglected this blog for *gasp* over two years and that apparently people are still reading! 

When Ellie was much younger, I often wondered why there were so few blogs related to older children and teenagers with Down syndrome.  Now that I have *another gasp* 13 year-old Ellie Bear, I realized that life just takes over.  Along with the usual school, therapies, and doctors' appointments, there are many more extracurricular activities and social events.  I have recently gone back to work.  Not in the medical field but a complete career change to literary PR and marketing.  Yes, I realize that is pretty much the complete opposite of what my degree is in! 

All of the above has left less and less time to sit down and blog.  Not to mention, to be perfectly honest, these blog posts took a lot of out me and took a lot of time.  It can be difficult to open oneself up like that and then I wanted to ensure that I was/am respecting Ellie while also providing accurate information.  While I highly doubt I will be posting very frequently, I do plan to post at least more than once every two years!

This is going to be short but I will tell you that Princess Twinkletoes is doing well!  She is in the 7th grade and thriving.  She still has a fair number of non-major random medical issues but we are all starting to recognize that it is "just Ellie".  It feels as though once one issue is resolved, another one pops up.  She has total teenage attitude with the growling, arms crossed, foot stomp when she is peeved and some days I have to search deep into my soul for patience! 

First Day of 7th Grade

She's the Hamburglar!

Notice a theme?  Chick-A-Boom loves her black and white stripes!

The pandemic has been tough.  Having a child with an immunodeficiency is rather isolating. For a while, it felt like the world was going back to normal while we were still  (and still are) being hyper vigilant.  Now that we are all boostered and blood tests shows that she developed antibodies, we are starting to venture out more. 

E loves her Adaptive Dance Class

Summer 2022 - Camp CAMP

In trying to stay safe, my husband had the bright idea to buy an RV so now we are embracing the RV life.  I am an old school camper - think tents whereas my husband has a great fear of bugs, birds, lack of AC and lack of WiFi.  The RV is a good compromise.  Ellie refers to it as the "big bus' and loves it! We have gone down to Port Aransas, TX a few times and then we went up to Wisconsin over the summer to visit my brother. . . only my brother got Covid so we didn't see him! This Christmas, we will embark on a holiday trip to California.  

I am hoping that all is well with all of you!

~ Anna

  

~~~~~~~~~ 

 *While this is a Down syndrome related blog, many of the health issues and psychiatric illnesses discussed here are unique to Ellie and not necessarily related to her having Ds.* Please see more information under the Disclaimers tab.

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 . . .



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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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Texas Blue Bonnets and Fire Ants

*warning: if you do not like funky skin pictures, do not scroll all the way down--happy pics first, then yucky ones*

Confession: People in Texas are obsessed with plunking their children down into a field of weeds (sometimes even in a road ditch) to take pictures.  These weeds are blue bonnets and are currently blooming in full force.  I may have bludgeoned people to death on FB with the question of "where ever did you find such a great place for blue bonnet pics????" because obviously I want to deposit my own precious little girl down into those delightfully colorful weeds and take photos.  It is tradition, you know.

I had a great plan.  Truly.  I picked a patch in a park near not far from out house.  This patch was near a trail.  I fully expected Hyperactive Bear to run along the trail and I would take pictures of her gleefully running away from me and the bluebonnets would be in the background.  I stomped around for snakes and found none.  This was going to be great!!!!

Yeah, as with most plans that involve Ellie, things did not go as expected.  She decided to sit.  SIT!   in a fire ant pile.  Fire ants [the species I am referring to in this post are the red imported fire ant] are native to South America but have migrated to the Southern regions of the US back in the 1930s, most likely accidentally imported via shipping crates.  They refuse to leave even though they are highly unwelcome visitors.  Well, actually they do serve a purpose in that they control the ground-nesting bee and earwig population, but I. do. not. like. them.  They swarm.  They attack.  They bite. . . multiple times.  It is estimated that anywhere from 3-16% of the population have an anaphylactic allergy to fire ant bites.  I once got a whopping case of staph due to one bite.  Yay!

Ellie, got over 30 bites. I stopped counting after a while.  She stood up from the flowers grabbing at her dress.  I thought she had to pee. . . until she started screaming.  Chick-a-Boom was under attack.  I threw her ant-covered shoes down the trail.  This caused Ellie to scream louder "Oooooh [shoes]".  They were up her dress.  I couldn't get them off fast enough.  One managed to viciously attack behind her right ear.  Her feet swelled up immediately.  Bright red and hot to the touch. I was profusely apologizing to Ellie while crying.  Ellie's pull-up protected her nether regions.  Those elastic bands that help hold urine in--also prevent fire ants from entering.  My darling.  My Bear.  Swollen and red.  All of this for a dumb picture in some weeds.

Crying hysterically on the phone to my husband and then my mother we developed our treatment plan. . . a la Dr. Google and eHow.

Ellie got a nice soapy bath.  I then applied a paste of baking soda.  Ellie got a whopping dose of benadryl.  Every 6 hours.  The swelling started to go down and we gave her another bath in Domeboro Astringent Solution.  More baking soda paste.  More benadryl.  Ellie didn't scratch at them, but I know they hurt her.  She couldn't wears shoes.  Changing her pull-up was painful.

The next day, the swelling was down and I could see the individual bites.  They came to a pustule head.  They were all red and hot.  I took her to the pedi who gave us a strong prescription steroid cream.  I also got bactroban antibiotic cream because I was told the chances of infection are high. Goody.  After 72 hours, the bites look much better.  I am never taking Ellie outside again.  I am wrapping her in bubble wrap and that is that.

First things first, Blue Bonnet Pictures:

Fire Ants: immediately after attack
There are no pics of her feet.  She would not let me near them.

Large red, swollen areas.  Unable to different individual bites.
Painful to touch and intensely itchy

Fire Ants: 12 hours later after antihistamine administration

swollen red masses with tiny pustule-like heads

Fire Ants: 24 hours later after steroid creams and continued antihistamine administration
You can see how the swelling is gone but the heads of the bites for tiny pustules. It is also hard to see, but they are bright red and more angry than before.

This pic does not do it justice.  Large patches of angry red-hot skin.  Mild swelling.  The bites have white-heads.
Sorry, no feet pictures--still very swollen.  Could not wear shoes.  Would not let me near them.

Fire Ants: 4 days
You can see the now they are just pimple-like marks.  The pustules are mostly dried out and scabbed over. It should be noted that Ellie did not scratch these.  We kept her pretty covered.

Sorry for the poor photo  quality.  They pustular heads are opening and forming craters.  Very itchy.  Some of the heads have turned into scabs.  Swelling is gone.  Heat is gone.

Fire Ants: 1 week

These are the only shots I could get.  Now look like the end stages of chickenpox.  Round bites with scabbed centers. Believe it or not, yesterday was the first time she actually tried to scratch them.

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.

A Beautiful Week

There is a lot going on in the world of Ellie Bellie Bear.  A lot of stress.  A lot of anxiety.  A lot of sleeping--for Ellie, not for m as I could really use some sleep--I fall into the stress and anxiety categories.  Rather than focusing on the chaos occurring within our household, I am appreciating the beauty. Here are a few snapshots from our week:


Ellie Bear Fashion Statements.

faux soccer socks are all the rage amongst preschoolers.  To get this fashionable look, steal a pair of Daddy's ankle socks.  Throw on a pair of winter boots to complete this sassy look.  These socks and boots go great with a knit sun dress or with a neon tutu.

Splashing Fun.

The most photogenic kitty ever--Amelie.

Reading to Pete the Cat

Preschool Love--Jack & Ellie

Selfie Photos.

Happy Weekend, everyone!