Monday, October 7, 2019

October is Down Syndrome Awareness Month: The Many Faces of Down Syndrome



October is Down Syndrome Awareness month and to celebrate, I'd like to introduce you to some of the members of this amazing community that I became a part of when Ellie was born with Ds. While all people with Down syndrome carry 3 copies of the 21st chromosome and share some facial features, they are all unique individuals just like everyone else.  They look like their family members and they have their own interests and strengths.  




Wyatt is 10 years old. He loves his big brothers, walking on the beach, reading, superheroes and playmobil!





Camryn goes by Cammie and is 8 years-old.  She loves the dirt, rocks, popsicles, swinging, and sliding. She is all and all full of energy, happiness, and love.





Hannah is 18, a senior in high school. Hannah loves singing, dancing and drama. Plus bowling and tennis. We have just been given the exciting news that Hannah is on the Homecoming court!



Ishika Pande is 10 years old and she loves dancing . Isla is learning an advanced level of Indian classical dance and has had more than 20 performances on stage solo and group from age of 6 . Other than that she loves talking a lot , cooking her own recipes and dressing up.



Ian is 9 years old. He loves school ,swimming, and the park. Ian is quite the social butterfly!





Kayla is 16 years old and loves archery, golf, baseball, swimming, coloring, dancing, and her younger brother!





Ruby is 8 years-old.  She loves dancing, her pet dogs, and slushees!



Amber is 9 years-old and she loves swimming.  
She has the nickname of AwesomeAmberSkye!



Alex is a 24 year-old senior in the MasonLife program at George Mason University. He likes sports especially swimming and basketball. He likes hanging out with his friends, playing video games, going movies and going to parties or just grabbing a couple of beers and watching football on the weekends.




Avery is 12 years-old. She loves school, basketball, swimming and cheerleading.



Julian is 9 years old and he loves to color, draw, and read.  
He enjoys gymnastics, dance, swim, and making silly jokes.



Cora is 8 years-old. She loves puzzles, music, and reading.




Ellyssandra Corinne aka Sissy is 8 year-old baby B of surviving triplets. Elly loves music to dance and singing and signing her favorite song. She loves Moana and Mary Poppins and swimming and running. Elly loves hanging with her animals her dogs Billy (which was Elly's first word) and Daisy. Elly is good friend and happy girl ahe has enriched our lives and taught us so much. Mommy and daddy and big brother Jorge Jr. ^^8^^ and your little brother Rory couldn't be prouder of you Sissy. 💙💖💙Triplets Forever




Benji is 9 years-old and loves playing with his siblings.  
He loves books, music, and nerf guns.





This is Ellie aka Ellie Bellie Bear aka Princess Twinkletoes and she is 10 years-old.  She fancies herself to be a singer and fashionista.  She loves to dance, swim, and ride horses.



12/27/1958 - 12/14/2012
This blog post is in loving memory of my Aunt Peggy.  Peggy loved bowling, swimming, and listening to John Denver.  She passed away just a few days before her 54th birthday in 2012.  She was a beloved daughter, sister, aunt, and great aunt.  Peggy, you are forever loved and forever missed.




Thursday, September 26, 2019

Everybody poops. . . or not

Welcome to another episode of "Why Won't My Child Poop?" 

Today's cast of characters feature Ellie Bear, a distraught Mama Bear, clueless ER staff, members of the Comprehensive Care Clinic, and a jolly x-ray technician.

Want to know why this little Turkey is smiling?  This is outside Dell Children's Medical Center.
 She was there for her appt with Dr. Simon.  Elli is in luv with him. 


First, a little background:

I am unfortunately known among many parenting groups as "the poop guru" (seriously who wants that title as their claim to fame?) as I can pretty much get any child to poop. . . except my own.

Remember way back when Ellie went 22 days without defecating?  Well, by end of August we were back to that.  Okay, that is an over exaggeration as this go around it was more like 6 days, but given her surgical intervention from 2 years and 9 months ago, constipation shouldn't even be an issue.

Sadly, all of my experience as a former pediatric nurse practitioner and working closely with her gastroenterologist pretty much amounted to big amount of nothing in the Bear's land of excrement.  For those of you who have been following this blog for a while, then you are aware of such lengths we went to in the past to regulate Ellie's GI tract and we now know that she has what is called moderate-to-severe delayed colonic transit.  That's a fancy way of saying Ellie's colon doesn't move stool through it, but instead sits there getting harder and harder thus distending the colon.  If you really want to know the entire story as to what interventions, diagnostic tests, and whatnot that we have tried,  you can search this blog for "constipation" or "cecostomy" or click on the label on the right side bar or if you are feeling extra feisty, google "cecostomy" and this blog pops up.

Cecostomy

For those of you who are new to the Bear's adventures, Her Royal Stinker Butt had a cecostomy performed surgically back in December of 2016.  The purpose of this tube is that it allows for high volume enemas to be given directly into the top of the colon, thus flushing her out.  There are many types of enemas, but we were pretty much sticking with saline.  In theory, I know isn't everything great in theory?  Anyway, in theory, these enemas would keep her colon mostly empty and thus preventing her from getting constipated.  For the most part, it worked . . . until July when we were finding ourselves have to near daily enemas via the tube and even some rectal ones with minimal results.



Medications that cause constipation:

Do you ever read the side effects of medications?  Nearly every single of one of them go like this:


  • Headache
  • Diarrhea / Constipation
  • Nausea
  • Fatigue /Insomnia


So . . . Ellie Bear lost weight about 18 months ago.  Some of it was expected because we took her off of the Risperdal which caused excessive eating and excessive weight gain.  What we didn't expect was the amount of weight that she lost - over 7 lb.  Then that was it.  She just stopped growing for the most part.  She was still eating close to 1800 calories/day which is a lot of a child her age with Down syndrome (people with Ds have about 10-20% slower metabolism compared to the general population), but other than growing in height a little less than an inch, she hovers around 46 lb.  She is now 10 years-old.  She is not on the growth chart for weight while she is 18% for height on a Ds chart.

First vs. Last day of school last year

Where am I going with this failure-to-thrive nonsense?  Appetite stimulants!  That's right, GI has determined that she is 5-10 lb(!!!) underweight and she is probably a kiddo that just has a high metabolism and thus needs more calories. (E has a history of failure to thrive and again, there are several posts on this blog that address the FTT and determine what was the cause). Therefore, we started her on cyproheptadine (Periactin), which is a prescription antihistamine that works as an appetite stimulant (and along a migraine preventative FYI).  Again, where am I going with this?  One of the top side effects is. . . ding ding ding freaking constipation!!!

Mismatched shoes are in vogue right now - as per Fashionista Ellie


The point of this blog post:

Okay y'all.  Now that we've establish that my daughter was no longer excreting fecal matter on a regular basis thanks to a medication, she ended up in the ER.  After 2 months of never getting fully cleared out and then 6 days of nothing at all.  Absolutely nothing, I didn't know what else to do from home.  Saline, mineral oil, glycerin enemas.  Enema through the tube.  Rectal enemas.  We maxed out on what we could give her without causing phosphorus poisoning.  She looked pregnant and her stomach was hard.  The gas though. . . this child was tooting like her life depended on it.  The house and classroom smelled like cabbage and dead decaying squirrels.  Believe it or not, this was a good thing because it means there was no obstruction.



So there we were hanging out in the ER for fun and the resident walks in.  I start to relay what all I have shoved into this kid's colon (which would have been the equivalent of a colonoscopy bowel prep for at least 4 adults) and I am getting the whole skeptical "so this is all rectal?" and "are you sure she hasn't gone to the bathroom with all of that?"  Gah!  What part of tube in her colon or cecostomy tube were they not getting?!  After explaining it all yet again, I finally hear:


"So what is a cecostomy tube?"

Now granted, this was a resident and she was still learning and cecostomies are not common so I went with the:  "So a cecostomy is when  the appendix is brought to the surface of the abdomen and it is used for high volume enemas to essentially flush out the colon ..... and here are some pictures. . . "  For tips on preventing your child from pulling out tubes (i.e. g-tube and/or cecostomy tube), click here.

An x-ray was ordered to rule out bowel obstruction. Because the x-ray tech was a male, Ellie wanted to show off her awesomeness and be-bops over to the exam table for her x-ray and poses like she is a fashion model.


Then nothing.  I hear nothing!  The attending never comes in.  The resident doesn't come back in.  However, the nurse comes in with another enema which we could have done at home and I ask her for the x-ray results which to summarize involved a large volume of solid stool (no kidding, Sherlock). Let us not forget the 1cm x 1.5 cm foreign body that left me sighing and saying "again?"!  Twinkletoes has a history of this - see here.  Of course, they are all, "she'll poop it out." except my kid wasn't emptying her bowel at all!  After painfully pushing out the equivalent of 2 small meatballs, we were discharged without ever seeing the attending or resident.

The following morning, I informed GI that I would no longer be administering the cyproheptadine to Ellie.  The ER visit was August 26th and it wasn't until Sept 9th that things finally became regular.  It should be noted that while it appeared that Ellie gained 2 lb while on the appetite stimulant, she has lost those two pounds.  I am taking a survey on how many ounces you believe was stool.  Also of note, I never did find that foreign body.




~~~~~~~~~ 

*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.

Sunday, September 22, 2019

A message from The Ellie Bear



I


am


coming


to 


get



you!

Next Month is Down Syndrome Awareness month and I hope to have a special post for y'all.  I also seem to have 3 unpublished blog posts that I never got around to finishing.  Just a lot of thoughts rolling around in my head and I'm having trouble getting them to paper/computer as well as the usual medical nonsense that Ellie must endure. *notice my husband's face in that last pic?  Yep, he wasn't entertained by our antics! *

Monday, September 16, 2019

Happy 10th Birthday, Ellie Bear!


Ten Years ago today. . . .


Ellie Marie Theurer
6 lb 10 oz
19.25 inches

Nickname: Ellie Bear; Chunky Chicken
Favorite past-time: sleeping 
Favorite food: formula
Favorite person: Daddy 
Favorite Book: Snuggle Puppy by Sandra Boyton
Favorite Song: Personal Penguin (from a book by Sandra Boyton)
Favorite TV show: Criminal Minds. . . wait, that was my favorite show to watch while I was feeding her



Today . . . Age 10


Ellie Marie Theurer

Nicknames:  Ellie Bear, Princess Twinkletoes, Turkey Bear, Stinker Butt, Miss Sassy-Pants

Grade in school: 4th grade

Favorite food: Nutella

Favorite past-time: playing with Barbies and coloring

Favorite activities: dancing, swimming, and horse back riding

Favorite people (in order of importance): Daddy, Kyla, Baba, Dr. Simon, Dr. Rangwalla, Dr. Rosenbloom, Dr. McQuiston, Mama, Grant, Grace, and Jack

Favorite Books: Pete the Cat books and Brown Bear, Brown Bear What Do You See?

Favorite Song: Don't Cry by Guns N Roses

Favorite TV show: Mickey Mouse



A Few Highlights

Irvine Park in California

Seal Beach, CA

CAMP Camp

Spring Break in St. Louis, MO

A rather unfortunate hospital stay






Attending a Kidz Bop concert

Braids!






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Sunday, August 18, 2019

A metalhead and a thief

It is time for an Ellie-ism post!  The other week I was regaling my therapist with tales of Ellie's shenanigans.  As she sat there laughing and I was tearing up from the sheer craziness of it all, I realized that I had my next blog post.  Given the crap going on in our lives and the emotional instability that The Bear is currently enduring, I realized that it is time to embrace the humor in these antics.



Definitely not auditioning for The Voice

*Don't Cry by Guns N Roses playing in background* along with the sounds of a dying baby seagull.

Drew: What is going on?  What is wrong?

Me:*tries hard not to laugh* Ellie fancies herself to be a rockstar.

Do y'all hear that?   The sound of a cat being strangled while being submerged in water during a bath?  That would be the sound of my daughter "singing".  Girlfriend is trying to channel Axl Rose and Robert Plant.

Ellie has been experiencing some emotional outbursts.  These are extreme reactions to things that she cannot seem to pull herself out of.  You cannot rationalize with her and as fast as it starts, it suddenly ends.  It is devastating to watch and unfortunately a few of these outbursts have resulted in me getting bitten or hit.

One (or many) such outbursts have recently occurred in the car when the "wrong" song comes on.  The screaming, the big crocodile tears, and kicking the back of the car seat occurs when I skip one of her favorite songs.  Mind you, I had no idea these were her favorite songs, but this led me to create a 5 song playlist on her iPad in hopes it would get her to chill out.  These songs have been on repeat.



Ellie's Playlist:

Lost It All - Black Veil Brides
In The End - Black Veil Brides
Don't Cry - GNR
Love The Way You Hate Me - Like A Storm
The Devil Inside - Like A Storm


hmmm. . . . perhaps it is good that she can't repeat these words nor understand what the artists are singing.



All in the Name of Fashion
100 degrees out and she insisted on leg warms on both her legs and arms. 

Princess Sticky Fingers

How many of y'all every had a kiddo steal something?  Or maybe you lifted something when you were really little?  Twinkletoes seems to think the drop in day care [Kidspa] is a borrowing facility.  She would be incorrect.  It started off with me finding the random block in her lunchbox or backpack.  I'd talk to her and then make her bring it back telling her "not yours and that's stealing".

I started to search her backpack and lunchbox before leaving Kidspa.  Then. . . well, let's see if I can type this with a straight face. Actually, let me preface this with Ellie wears leggings and as such doesn't have pockets so she improvises.  She is now attempting to walk out of the daycare with items shoved into the waist band of her pants. The first time, we all died laughing.  It was so obvious she was trying to pilfer toys.  She was trying to loot a broken shovel, sunglasses, and a block.  The staff was dying because it was just too funny. I got over being mortified and tried to contain my own laughter.  No need to reinforce this behavior.  Now I walk into Kidspa and say:

Ellie, you are going to listen to your friends, keep hands to self, and not steal!

The Stinker Butt isn't heeding my advice.  The last time, I even patted down her waistband and she still managed to steal a toy.  She comes home, runs to her room, and whips out a magnifying glass!

The Stink Eye
Bear-itude




This kid is killing me with the yelling "no" while crossing her arms and stomping her foot.  She's like a teenager!


Breaking and Entering 

Ellie Bear seems to be headed down a dangerous path here.  The setting: speech therapy waiting room.  For speech and OT, there is a big waiting room and then two locked doors that lead to the therapy rooms and gym.  As I am talking to the speech pathologist before therapy starts, Ellie reaches into her waistband and whips out her backpack tag (it's like a luggage tag/card).  She runs up to the door and tries to "scan" her tag.  That pretty much had the entire waiting room in stitches.  I guess Turkey Bear was really excited about therapy.  Sadly, her backpack tag didn't unlock the door.


First day of 4th grade.


The Little Parrot

Ellie's speech has exploded over the past few months so she is repeating a lot of words that we say.  They are not clear to most people, but for the most part I can understand about 50%.  Little Miss hasn't quite grasped the meaning of pronouns in verbal language, but she seems to understand what "not yours" means.  If she wants something - i.e. she wishes to ride in she random car in the parking lot, wants a toy, or contemplates taking Andrew's sunglasses, etc - she taps it and tells herself "not yours. . . Daddy's!". (I am always chopped liver).  Her newest is if it isn't' something we want her to do (i.e. color the table), she yells:

"Ah ah!  No ma'am, not yours!"

So parents, if you are wondering if your kids pick up things you do and say - they do!

Someone Thinks She's 
A Swimsuit Model



There you have it. . . a short list of the most recent Ellie Antics.

❤️❤️❤️❤️


Follow Ellie Bellie Bear on Facebook! https://www.facebook.com/thechroniclesofelliebelliebear/ Check out Anna's Bookshelf! https://annasbookshelfbookreviews.blogspot.com

October is Down Syndrome Awareness Month: The Many Faces of Down Syndrome

October is Down Syndrome Awareness month and to celebrate, I'd like to introduce you to some of the members of this amazing communi...