Thursday, July 9, 2020

A mask for kids with Down syndrome

Do you hear crickets?  Yes, we are here!  We are alive!  We are safe and healthy!  We haven't been inside a restaurant or store since mid-March due to the pandemic and due to the fact that Ellie has immunology issues along with asthma and other underlying health issues.  The CVS drive thru is considered a vacation at this point and I long for the days when I can go to Target and grab coffee with a friend. 

True, I have neglected this poor blog for *gasp* 7 months and this is just a quick post about face masks.  I had shared a pic of Ellie modeling her fancy smancy Mickey Mouse face mask on Facebook and several people asked where I got it.  The truth is that I made it which I know is shocking for many because I can't even sew a straight line.  You could, in theory, hand sew this mask, but I do recommend a sewing machine.

For those of you new to this blog, Ellie has Down syndrome.  Her unique facial structure, such as low set ears and a flat nasal bridge can make it rather difficult for her to wear a face mask that fits well without falling down her nose or off her ears.  Not rocking an extra chromosome?  That's okay, this mask is also appropriate for the general population.  For any mask, no matter the style, you want to make sure both the nose and mouth are completely covered and fits snug on all sides.

I tried the 3 masks above on Ellie:
Top: tie mask
Middle: ear loops
Bottom: elastic around the head

I originally started working on those tie behind the head pleated masks with a pocket for a filter.  A google search produced several tutorials so I just went with the first one that popped up.  I hated having to constantly retie them so I tried those draw string clamps things (see below) to make it easier. I also used bias tape for the ties because I was lazy, but you can make your own ties.  While it works fabulously for me and Ellie adored her cupcake one, it kept sliding down her nose even with using wire for a nose strip.  

Plastic Toggle Rope Locks: 

That led me to trying the over-the-ear loops.  After an extended search on google, I found an excellent video tutorial from EasyToSew that was easy to follow along.  This is the video that I am now using for all of my face masks. The video towards the bottom of this post.

Anyway, behind the ear loop mask was an epic fail.  With her low set ears, common in people with Ds, the mask wouldn't completely cover her nose.  As you know, the mask won't do much good if you don't cover your nose! Then there was the part where the elastic wouldn't stay around her ears.  The damn thing just kept falling off.  Even though the ear loops didn't work, I really liked how fitted the mask was.  (This is actually the mask that I currently wear for myself).  

I liked the fit of this mask, but it wouldn't say over her nose.

I used this video for the basic pattern and construction of the mask.    The pattern in the video is perfect for an adult so you will have to make a few adjustments for a child or an adult with a larger head.  I also eliminated the elastic for the ear loops and instead attached longer elastic to go completely around the head.

This is a tri-layer mask meaning there are 3 layers of fabric.  The third layer also serves as a pocket if you want to insert a filter.  I use a coffee filter folded in half.  If you use a filter, you must change it out each time you use it.

Pattern: I cut out the pattern as shown in the video. For Ellie, I then shortened each side on the end by 1.5 cm so that it would fit her smaller face. I did not make any changes in the top-bottom dimensions. (For adults with larger heads, I added 1.5 cm)

For the nasal wire, I use aluminum nose strips that you often see on medical masks - the ones without adhesive. I did use two pieces of floral wire early on, but the wire eventually breaks and pokes through the fabric.

Instead of using elastic for ear loops, I had the elastic go all around her head. I used 1/4 inch flat elastic (also on amazon). Ellie is 10 years-old and has a relatively small head so I went with:

Upper elastic strip: 11 inches
Lower elastic strip: 8 inches

You want to make sure that the elastic is snug enough that the mask will stay in place, but not so tight that if feels like her head is in a vice. You may need to play around with the lengths. If you aren't sure, it is easier to use longer elastic strips and then tighten it if need be.

Finally, after you've done all of that and your kiddo still refuses to wear the mask, you can check out these tips:

Tuesday, December 24, 2019

Happy Holidays

May you all have a wonderful, safe, healthy, and relaxing Holiday season full of laughter, love, and copious amounts of coffee!

Sunday, December 1, 2019

I have no idea what I am doing: fostering independence

I really wish that parenthood came with an instruction manual.  Only modify that manual to be about special needs parenting and have it contain the knowledge and wisdom of a parents, teachers, psychiatrists, occupational therapists, speech therapists, patient advocates, and well, everyone!

All children are unique individuals with their own strengths and struggles so really you cannot lump them all into one group, but I do wish that I had some guidance.  I honestly have no idea what I am doing here when it comes to teaching Ellie life skills.  Am I doing too much for her and holding her back?  Or are my expectations too high?

My goal, like most parents, is to help my child to be come self sufficient.  She already is and will be capable of a great many things and while I am not under the delusion that Ellie will grow up, move across the country and live 100% independently without any supervision, I do want to foster her independence as much as possible.  What that will look like in the future -whether she lives in a nearby apartment nearby with someone checking in on her vs. a group home vs. living with us, I do not know. The thing is, I have absolutely not idea how to identify and teach her the necessary life skills to set her up for success.

Right now, I have the following short-term goals in mind:

A. Be able to make her own "meals" (a Nutella sandwich is a meal - don't judge!)

  1. Able to remove bread from package
  2. Open/close the Nutella jar (she's getting there!)
  3. Properly hold knife to remove Nutella from jar and spread onto bread
  4. Be able to open a package of food (i.e. remove the wrapper from a nutrition bar)
  5. Be able to unscrew the top to her supplemental nutritional shake

B.  Get this kiddo poop trained!

  • First and foremost,  this is out of my control and Ellie's control given her complex GI history and colon situation, but it is a goal nonetheless.

C. Able to change her bedding and put her clean laundry in the correct drawers

  • Bonus points for folding.

D. Drink from an open cup with all of the contents ending up on the floor or herself.

E. Understand the concept of time.

  • Ellie can read both an analog and digital clock to the 1/2 hour mark, but she doesn't really under the concept of time.  For instance, if I were to say that Kyla comes at 4:00, she does not understand that.  If I say you've got 5 more minutes, she only seems to grasp it if I set a timer.

Sounds easy, right?  It isn't.  I have a 10 year-old daughter who thinks like a 4 year-old with the fine motor skills and receptive language understanding of a 3 year-old.  Are the goals that I have set for her appropriate for her developmental level?  Am I pushing her too much or not enough? I feel like a horrible parent when I think it would be so much easier and faster to just do it for her (obviously, I am trying to avoid the "just doing it for her").

Oh and by the way, do not google "how to use a knife" or you will get some weird and disturbing results.

This brings me to changing my mindset.  Rather than focusing and lamenting about what she can't do (yet), instead let's celebrate what she can do all while trying to figure out how to give her the tools the she needs to succeed. . . . once I figure out what those tools are, that is.

After all, she has already attained several life skills in the past few years and I know that she will continue to gain more!

What she has already accomplished:
  • Laundry -  This kiddo has been using the washing machine with minimal assistance for years now.  I need to work on the whole folding clothes and sorting thing.  Also, I need to keep reminding her that if she is going to wash a lovey, she should wash her other dirty clothes at the same time.  As in, do not do an entire wash cycle for 1 blankie!
  • Cleans house - dust, wipes counters, sweeps/mops floor
  • Orders food at a restaurant - this is where her speech device comes in handy
  • Swallow pills
  • Administer her inhaler with assistance
  • Makes her enema for her cecostomy tube
  • Differentiates between trash and recycling (can someone educate my husband that cardboard can be recycled and styrofoam cannot?)
  • Able to get dressed, including socks and shoes
  • Able to put on jacket and pull up zipper
  • Uses a key to unlock doors - while this is good, it also means she is now able to get into my office!
  • Packs her lunch - granted her idea of a lunch includes  an entire bag of grapes, a bag of baby carrots and an unwrapped zone bar, but at least she didn't forget the ice pack!

So. . . if anyone has that special needs parenting instruction manual please send it on over to me!

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.


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







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


Spring Break in St. Louis, MO

A rather unfortunate hospital stay

Attending a Kidz Bop concert


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A mask for kids with Down syndrome

Do you hear crickets?  Yes, we are here!  We are alive!  We are safe and healthy!  We haven't been inside a restaurant or store since m...