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


Follow Ellie Bellie Bear on Facebook! Check out Anna's Bookshelf!

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

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! Check out Anna's Bookshelf!

Wednesday, August 7, 2019

CAMP Camp - a fun experience for those with disabilities and their siblings

It has been  a wild and crazy summer for us.  One full of fun, a bunch of doctors' appointment for me, swimming, and camp.  Last year, Ellie attended an overnight camp for children with special needs.  To say I was anxious was an understatement.  Would she be homesick?  Could they handle her medical issues?  I need not have worried, because last year, when we went to pick her up - the cheeky little monkey ran up to Andrew and I to say "hi" and then promptly told us "bye bye" while running away.  This year, however, I was really looking forward to that week long camp - for both myself (I get a break!) and for Ellie who absolutely loved it last year.

Camp CAMP or Children's Association for Maximum Potential is an organization in Center Point, Texas (near San Antonio) that offers various summer and school-year programs for individuals with disabilities ages 5 - 50 years-old and their siblings.  

I honestly cannot say enough good things about this camp.  Given Ellie's medical conditions and developmental delays, she is not able to attend traditional camp. Camp CAMP has provided her with an amazing camp experience - a place where she can make friends, ride horses, swim, canoe, cook, dance, play sports, and participate in a wide variety of activities.  

hmm. . . I think she has something on her face

Each camp is 1 week long and camp sessions are divided into adults, those with mild intellectual disabilities, medically complex/physical disability/mild ID, and autism.  Ellie was in the medically complex group where she was with kids cerebral palsy, muscular dystrophy, seizure disorders and other medical conditions.  All of these kids were encouraged to participate in all activities and all activities were adapted for each child.  

I was informed that the ferret was her favorite. 

It was pajama day!
Medical staff are there to meet all medical needs and administer medications, etc.  The staff includes physicians, nurses, respiratory therapists, pharmacists, therapists as well as nursing and pharmacy students.  Each camper has at least 1 volunteer assigned to them (some have up to 4 depending on their needs).  The volunteer is with them at all times and will sleep in the climate controlled cabin on the bunk above the camper.  Ellie really connected with her volunteer and I loved knowing that there was someone there to keep her out of trouble! I believe Ellie's session included 98 campers, 150 volunteers, and 40 medical staff (please do not quote me on this as I am trying to remember exactly what they announced at the closing ceremony).  

All ready for the dance.
I have no explanation for the fork.

This year, Ellie absolutely loved swimming. Whether she was in the pool, the splash pad, or tubing - she was quite content to be a mermaid.  Her favorite part of camp was the dance.  She had her hair, nails, and makeup done (and apparently Ellie decided to apply eyeshadow to some of the volunteers) and was decked out in a set of fairy wings.  She also acquired a boyfriend.  Yikes!  She's too young to date!

Ellie was in the girls coyote tribe so they tie-dyed their shirts red and decorated them with puffy paint.

Princess Twinkletoes starts school next Thursday and I think it is perhaps time to get back into a good routine.  I am not looking forward to getting up early again . . . not that The Bear was sleeping in much anyway.  The summer was busy, but I am happy that she got experience overnight camp.  

Thursday, June 13, 2019

Caregiver Woes with the need to live forever and Fun in the Sun

I am a hot mess over here.  I do mean that in the metaphorical and literal sense in that it is hotter than Satan's. . . oh wait.  Kid's blog.  Just know that it is ridiculously hot and that I could cut the air with a knife given the extreme humidity and I could fry an egg on the hood of my car.  Or driveway.  We were able to escape the heat last week as we took a family vacation to Seal Beach, California. The weather was beautiful and cool.  Ellie enjoyed frolicking in the ocean and we had a great time visiting the Santa Monica Pier and returning to Irvine Park.  Last year, The Wish Connection sent our family to California and hosted an event at Irvine Park.  I guess Princess Twinkle Toes of the Turkey Bears made quite the impression because the train conductor remembered us!  Actually, he remembered Andrew and Ellie and especially the part where Bear stole the microphone from Princess Elsa and started to "sing" on the train.

Riding the train at Irvine Park

1 year ago at Irvine Park

One of my greatest fears and greatest desires is quite morbid, but I am going to try to explain the best that I can.  My greatest fear is to lose my daughter and yet, my greatest desire is that I outlive her.  Now I mean this when she is close to 60 years-old (this is the average life expectancy of a person with Down syndrome in the USA) and I am in my 80s.  My greatest fear is that she will out live me and end up not getting the care and love that she needs.  That she will end up in some unlicensed care facility where she is neglected both medically and emotionally.  That she is all alone.  The idea of this happening causes me great anxiety while at the same time, the thought of losing her cripples me.  

The past few months have opened my eyes a bit and have resulted in me having a new goal.  Yes, what is it about these goals that I have no control over?  Not only do I need to live forever, I need to be healthy - both physically and of sound mind.  There are people in my family who have lived to be over 100 so longevity is entirely possible, but there are also those who died "youngish" (80s is young, right?) and had dementia.  These past few months have been trying and made me realize that I can try to eat healthy most of the time and work out, but I can still suffer from illness.

With the exception of my annual physical and a fair number of visits to my sports rehabilitation doctor for my spinal issues a few years back, I have been to the doctor more these past few months than in the past 10 years combined.  I had a whole slew of nonspecific symptoms that I ignored for a while as I was chalking most of it up to stress and later my neck issues.  Nurses really do make the best patients!  

I was suddenly sleeping 10 hours a night and taking on average, two 2 hour naps a day.  I also had malaise which is where I felt blah, just not right, and almost like I was coming down with the flu. I assumed that the fatigue and malaise were initially due to stress.  Up until early March, the Bear was having major psychiatric issues, self harming, and multiple doctors' appointments.  It was stressful and I had trouble making sure I was taking care of myself.  I have a history of having that extreme fatigue where it would last a few weeks a few times of the year.  So I ignored it.  Only 2 weeks turned into 3+ months.

During this time, I was having excruciating headaches that would only disapate with laying down.  They were odd.  It would start on the left side, the back of my head and then travel up along the back side of my left ear while looping around my forehead.  I was also having some radiation down my left arm and I had significantly decreased mobility of turning my head to left.  I have a history of cervical spine stenosis (where arthritic vertebrae push into the spine cord and surrounding nerves) and I just assumed my steroid injection from 3.5 years ago wore off.  So I requested a script for physical therapy and unfortunately that turned into a disaster after just one session.  I've had vertigo (the sensation of spinning or dizziness) for a long while now and I just assumed it was orthostatic hypotension which is where your blood pressure drops when you go from sitting to standing too quickly - many people call it a "head rush" only after physical therapy, it changed.  I started to have vertigo while sitting, with various head movements bending over, etc.  Again, I attributed this to my neck. The fatigue, headaches, and the vertigo led me to no longer working as a substitute school nurse and I was having to depend on Andrew to take off work to drive Ellie to some of her therapies.

With the vertigo - I couldn't even watch her on the carousel with nearly falling over and extreme nausea let along ride it with her.

The thing is, whenever you have a whole bunch of vague symptoms, you tend to think it is one issue. . . not multiple.  I got in to see a new sports medicine doctor who told me that the vertigo was not from my neck and to see my PCP for the fatigue.  I then started a round of doctor roulette.  I've had a ton of blood work to rule out anemia, hypothyroidism, Vitamin B12 deficiency, electrolyte imbalance, Lupus, kidneys issues, etc (that isn't everything but you get the idea) and then a neck and a brain MRI.  I finally got a steroid injection into my neck which helped with my head/neck mobility and the pain down my arm but did nothing for my vertigo or headaches.  The fatigue and malaise suddenly went away and I don't know if it is related to the fact I had to take high dose steroids before getting IV iodine contrast or if it was just a flare up of something, but I am not complaining!!!  I am currently seeing a neurotologist - a neurology ear doctor- who specializes in vertigo.  There is still some testing, but it looks like it is related to BPPV or benign paroxysmal positional vertigobenign/idiopathic intracranial hypertension (hence the headaches, vertigo, ear issues but I am not totally sold on this diagnosis), and possible a temporal bone issue at one part of ear as seen on MRI. Basically, I am a hot mess, BUT things are finally getting better. 

So all of this brings me back to my greatest fear.  It is one thing to say I need to live forever so that I can care for Ellie, but what happens if it is me that needs to be looked after?  

Monday, May 27, 2019

Happy Memorial Day!

School is out and I officially have a 4th grader on my hands.  Can you believe it?  I feel like I am not old enough to have a child that is almost 10 years-old, but my white hairs and fine lines say otherwise. 

I've been dealing with some major health issues these past few months which is why I have been neglecting the blog and the The Chronicles' Facebook page.  Things seems to be better these past few weeks and I will keep y'all up to date on Princess Twinkletoes' adventures.  I am slightly better about adding pics to my IG account so be sure to follow The Bear there:

Photos: Andrew Theurer at Elizabeth Milburn Pool

Tuesday, April 30, 2019

How to prevent your child from pulling out their g-tube / cecostomy tube

For those of you who have been following along on this blog for a while, you know that some of my friends and acquaintances have referred to me as the 'poop guru' - yeah, not exactly what I want to be known for!  Thanks to Ellie's unique gastrointestinal system, I have learned just about everything there is under the sun to relieve constipation and get a child to defecate regularly. . . except my daughter, that is.  Anyway, this blog post comes about because on Friday, I get this call from the Interventional Radiology nurse.

IR: Anna, remember when Ellie pulled out her [cecostomy] tube?

Me: Unfortunately.  I'd like to erase that experience from my memory.

IR: She hasn't pulled it out lately (*me: Thank goodness!) and I need to know how you what you are doing because we have a child who keeps trying to pull his out.

Well okay then.  Here are a few easy strategies that have barricaded the Bear from deftly removing her indwelling colon tube:

Check that out!  I think that this is the first pic that I have shared where the  tube isn't infected and there is no granulation tissue.  Gorgeous!

For all of you The Chronicles newbies - this is a Chait Trapdoor aka cecostomy tube.  It is a button/tube goes into the ascending colon and is used to administer very high volume enemas.  Twinkletoes here thought it would be fun to only have a bowel movement every 12-22 days even with multiple dietary, lifestyle, and pharmacological help.  Puking because you have stool squashing your stomach generally isn't a good thing. That is what happens when your colon has moderate -to -severe delayed colon transit.

Moving on to what this blog post is actually about!  After Ellie pulled the tube out, I tried using those belly bands that you could get off Etsy for kiddos with g-tubes and I tried making them myself.  As adorable as they were with their fun cartoon characters and bright patterns, they didn't work for the following 2 reasons:

1. The belly band would either bunch up with movement or completely ride up on her stomach above the tube.  I think that it would have been fine if it was a g-tube, but since the cecostomy is lower on the abdomen, it just wouldn't stay covered.

2. She could take them off.  Mainly because it was fastened with wimpy velcro.

What I am about to tell you will just blow you away - okay, it most likely won't.  I went over to Amazon, my online addiction, and looked at those surgical abdominal binders that people use after pregnancy and gut surgeries.  These things are full on elastic and have the industrial strength velcro.  The problem was that I bought the generic one-size-fits all and I had to cut it in half width-wise and remove a significant portion of the length.  Then the edges would fray.  The link below is for the brand that works best for Ellie and has various option sizes. It is latex-free and it is available on Amazon Prime. (heads up: while it is Amazon Prime, it usually takes 1-2 weeks to arrive, but hey, you get free shipping!) Ellie wears the small. She is currently the size of a very skinny 6 year-old child at 44 lbs, but she did wear the same size when she weighed 7 lb heavier [someone explained to me why no one is concerned about her weight loss?! Yes, she lost weight a year ago when she stopped taking Risperdal, but still!].

That would be crayon all over her binder.  Once upon a time, I labeled her binders with a sharpie for Camp.  She now thinks all of her binders should say "Ellie" so she grabbed crayons and wrote her name all over it.  

Ellie loves the binder and I think it is because it provides a bit of compression - sensory input.  

But what about when my kid is in the bathtub or shower, you ask?  Turkey Bear wears a one-piece swimming suit for bathing.  Now I know that for all the boys out there, it wouldn't exactly be fashionable, but I will tell you it works!

There is one more thing that helps detour her from yanking out the tube.  Ellie's tube is too big for her and so it is moves around a lot and leaks horribly - gross!  Because of this, we keep a piece 4 x 4 non-woven gauze folded into quarters and secured with paper tape over it.  (if your kiddo has sensitive skin like Ellie Bear - use Critic-Aid AF around it before covering and stick with paper tape).  Notice that I said non-woven gauze.  Woven gauze, which is most commonly used in the hospitals, tends to get stuck on the tube and then you are at risk for accidentally pulling it out when you go to remove the gauze. 

Look at that horrible bandage job of mine!  Did y'all know that I used to be a pediatric ICU nurse?  That means wound care was in my job description!  No one said it had to be pretty.

Fingers crossed that some of these tips will help prevent your kiddo from yanking out his/her g-tube or cecostomy tube!


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-...