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.

❤️❤️❤️❤️

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Happy 9th Birthday, Ellie!

Can you believe it?  Nine years ago, our world changed forever. . . for the better.  Yes, we were off to a rocky beginning.  Andrew and I nervous about being new parents.  (Andrew was scared to hold her and feed her) What if we mess up?!  Yes, we will mess up and then what?!  We were trying to get over the shock that our tiny, perfect baby surprised us with her extra 21st chromosome.  We were elated.  She's perfect!  We were scared.  We had this vision on how things were going to be and then the sassy Ellie Bellie Bear (yes, she was sassy even as a newborn) threw us through a bunch of loops.

I still cannot believe that I have a 9 year-old (read: that I am old enough to have a 9 year-old even though I have the white hairs prove it).  I feel like she was just a little toddler yesterday.  This year has brought many changes.

Ellie Bear is making a ton of friends at schools and when she is on her best behavior - with kids on playscapes.  She loves to dance in her 2dance2dream class and at home to YouTube videos.  Turkey Bear enjoys her horse therapy sessions and always asks to dance with her respite care provider, Kyla.  Over the summer, there was lots of father-daughter bonding time at the swimming pool.  The Bear stills favors Mickey Mouse over all other shows, but she does like The Wiggles (who she got to meet on her Wish Connection trip), Frozen, Nina Has to Go short stories, and Daniel Tiger's Neighborhood.  Her favorite bands to dance to include: Like a Storm, Skid Row, Guns n Roses, Queen, and Aerosmith (yes, I am raising a metal head). . . and just to add in some country (a true Texan), Cole Swindell.  Her favorite playtime is pretend play with her stuffed princess dolls.

She is trying to talk!  Ellie is imitating everything we say. . . as in after I said a choice cuss word at a guy who cut me off and she repeated the second half of the word. Hint: it rhymes with "sass".  Right now, her two favorite phrases are "there is (she/he) is!" and "bye y'all!"

Ellie Bear finally gained weight after being diagnosed with Failure to Thrive for 3 years.  She also grew a lot.  Who's taking bets that she will eventually be taller than my 5'2"?  Any takers?  

Fostering independence and sparking communication

Little Miss Independence

One of the things that we really work on is fostering Ellie’s independence.  This is why she’s been doing trash duty, laundry, dishwasher duty, and feeding the pets for a few years.  Her “folding” leaves much to be desired! She is really into being like Daddy and Mama so she loves to dust mop the wood floor.  Now if only I can get her to do bathrooms!  We are still working on dressing independently, but she did learn how to put on her coat by herself and she is so proud of herself!

Now potty training, that is another story.  Although, I do find it entertaining that she is enamoured with public restrooms.  She tells us 3 x at Noble Sandwich Company she has to go — all because they have black toilets.

At this point, we are teaching her how to manage her medical care.  She helps me make her enema in the kitchen, gets her wound care supplies, and helps with her abdominal binder.  She recently started a daily inhaler for asthma (more on that later) and it learning to do it herself.

Apparently, the pie was so good that she had to dive in face first.  When we told her to use her fork . . . well, she did.

Communication: 

Bear Bear is really trying to talk.  There are sentences, but we don’t understand them.  She made up another a sign and was saying something, but we just didn’t get it.  It wasn’t on her speech device.  The frustration and tantrums were epic.

We finally figured it out when this past week I caught her packing her lunch, loading up her daycare backpack, and putting on her shoes.  Kidspa.  She wanted to go to Kidspa, the drop in daycare aka “play school”.

Unfortunately, it was New Year’s Day so they were closed.  We told her tomorrow. She wasn’t getting it.  We showed her the calendar and really tried to help her understand.  Finally, we told her first she will go to bed and then in the morning she would go to kidspa.  So here it was 2pm on and I see her grab her blanket, turn on her oxygen, turn off the light, and climb into bed. Five minutes later, she comes out and gives me this exaggerated fake yawn and again gets her backpack and shoes.  

Ellie has definitely taken to using her Chat device. 

Me: “Ellie do you love Mama?”

Ellie goes to device.

Ellie: “I love Dada.  I love Baba [grandma]”

I see how I rank.

Happy Holidays

Earlier in December, my parents and brother came down for a visit.  We crammed so much in.  Seeing Santa, riding the train at the mall, decorating the tree and decorating a gingerbread house as well as having a family holiday meal at Threadgills [southern cooking and live music, the armadillo world headquarters, where Janis Joplin got her start].  On Christmas Day, we celebrated my friend’s in-laws’ house which is becoming a lovely tradition. 

As for New Year’s.  Oh yeah, I stayed up late . . . until 10:30pm.  We certainly know how to party in the Theurer household!  We hope that all of your are doing well and that your 2018 is off to a good start!

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Communication or Lack There Of

Will she ever have a conversation with me?  Will she be able to order off a menu at a restaurant?  Will she ever be able to tell me about her day?

These are the questions that circulate through my head on a regular basis.  A few days ago, I came across this blog post: loving a child who cannot speak and I really identified with it. You see, Ellie is predominantly nonverbal.  She has a handful of words that for the most part, only I understand and even then, it must be paired with a sign.  So I suppose you can say that I don’t understand her verbally, but I sometimes understand her signs.

Will she be able to tell me who her best friend is?  Will she be able to tell me if she is being teased, bullied?  Will she be able to contact someone in case of an emergency?

Ellie communicates via sign language and vocalizations.  Her signs are rudimentary meaning they are gross approximations of actual signs from American Sign Language.  In fact, some of them look nothing like the ASL sign at all.  She also makes up signs.  This leads to great frustration - both for Ellie and myself.  What does she want?  What does that sign mean?  She attempts to vocalize if she knows the sign.  If she doesn’t have a sign, there is no vocalization.

Baby, ball, mama (the most important word!), dada, horse, bus, cracker, bye bye - these are the words that she can say clearly.  The words that are understandable to most strangers.  Words that I am so proud she can verbalize.  Yet, these words will only get her so far in home.  With friends.  In the classroom.  In the world.  I worry.

Will she ever be able to say her own name?  Her address?  Phone number?  What if she gets lost?

It is my hope that with enough speech therapy, she will be able to communicate beyond one word sentences. That she will be able to be heard. Understood.  That she can communicate her personal needs and wants.  Yet sometimes, I find myself in despair.  Lowering my expectations, which is something that I am ashamed of.  Shoot for the stars.  She will surprise us. She will speak. Yet, I doubt and I don’t want to.  It isn’t fair to Ellie. I want to have those high expectations.  I don’t want to limit her.

Vantage Lite.  LAMP.  Proloquo.

The above are communication programs and apps.  Speech augmentative communication devices such as an iPad or a device specific for the production of speech can greatly help a person “speak”.  Communicate.  It has been recommended by Ellie’s teacher and speech therapists that she get a communication device.  The thought is that working on speech, using sign language, and augmenting with a communication device will help Ellie develop speech.  A total communication triad.  I am hopeful because even if she remains nonverbal, she will be able to converse, order food off a menu, state her name and contact information through this device.  The communication device will give her a voice.

Right now we are waiting.  We have applied to various places to get either the Vantage Lite device or an iPad with the LAMP app.  Of course, I hate waiting.  I want the device now!  I am ready for her to have a voice and I imagine Ellie is ready too.  It is time for me to erase those low expectations.  To raise them up.  For Ellie can and will do great things.

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July Update: The Fun Stuff and The Medical Stuff

Believe it or not, there is not much to report.  July has been relatively tame with the usual therapies, fun summer activities, and only 2 doctor's appointments.

The Fun Stuff:

At the very end of June and into July, my mom (Baba to Ellie) visited from St. Louis.  We had a full schedule trying to fit in everything we wanted to do.  With each visit, we make sure to get breakfast with awesome coffee and head to the mall to ride the train.  It is tradition, you know!  We went to a 4th of July BBQ at my friend's house - the friend I have known since I was 8 years-old, the one who introduced me to my husband.  We had a great time and Ellie was very well behaved.  You all know what a feat that is.

Ellie and Baba

Ellie is still trying to hard to talk.  She is saying new words such as arms, kick, and fast (sounds like *ss).  Girlfriend certainly has her curse words down. Her speech therapist had me write down 10 of her most favorite foods so that she can work on these words specifically.  At the very top of the list is "cake". Right now, she signs it incessantly while making the "k" sound only.

4th of July BBQ

At the beginning of July,  Ellie participated in a dance camp for the children who are a part of the 2dance2dream program.  The Bear had a great time and I had 2 hours for 3 days to myself.  It was wonderful.  I did grocery shopping and ran a few errands.

Enjoying dance camp

Last year, we started swim lessons with this woman who works solely with kids who have special needs and their siblings.  Ellie made great progress last year and I worried that she would have lost all her skills during the school year.  Not so, she remembered!  As a child who is petrified of water (aside from baths and a splash pad), she is doing great.  With some assistance, she can swim across the pool.  It isn't super wide, but it is amazing progress.  She knows to hold her breathe and come up for air and moves her arms to propel herself through the water.  She still has trouble coordinating kicking and arm movements together, but that will come with practice.  She is also able to pick up diving sticks from the bottom of the pool.

The Medical Stuff:

Weight Gain-- that's right, our girl finally gained weight!  Nearly 2 lbs.  The Bear is going to be a chunky chicken once again.  Well maybe not but her ribs don't hang out as much.  She is still eating the same amount of food, but we started Carafate for her ulcers.  I am thinking she is finally healing and is now able to absorb more nutrients from her food.  Fingers crossed she keeps the weight on.

Urology: Six weeks people.  Six weeks to get a pre-op appointment!!!  Apparently, GI does not do the cecostomy ostomy and button procedure [Malone procedure].  Urology does.  So on June 16th, we got referred to urology.  She already has a urologist for her chronic urinary retention (which has resolved!  Woooohooooo!), yet she was referred to a different doctor, Dr. C.  Dr. C was out of town.  Once he returned, he took an entire week to get to her chart before referring her to her primary Urologist, Dr. McQ.  At this point, Dr. McQ was out of town.  She was pretty quick to review Ellie's chart and set up phone conversations and emails with Ellie's gastroenterologist.  However, the GI doc wanted to meet with the urologist in person.  They were going to meet up in 2 weeks.  Both docs conversed this past Tuesday and Dr. McQ worked us into the schedule yesterday.  It is a good thing we had a pre-op appointment as GI told the urologist that we just wanted to catheterize and not have a button.  Um, no.  We want the button.  This is why it is good to confer with all people involved in your child's care.

Now, there will be two urologists involved in this 2-4 hours procedure.  The goal is to do this laparoscopically, only Ellie may have a super floppy colon due to the musculature issues and being stretched out.  If they are not able to do it laparoscopically, they will open her up.  I am quite apprehensive about this.  I do not want to do this if they have to make a big incision, but we also need to treat her issues.  We won't really know what will happen until they get into the OR. So coordination for surgery is tricky as both surgeons need to be available for 4 hours on the same day.  Fortunately, we have a tentative date for September 12th.  Ellie will be admitted the day before for a bowel prep and then surgery in the afternoon on the 12th.  After that, she has a 2-4 day post-op hospital stay.  How will I keep this child occupied for that long?! Fingers crossed and prayers that she can have surgery during this time or we are looking at a much later surgical date that may be affected by insurance changes. Fingers crossed that our primary insurance covers this procedure, the bowel prep, and hospital stay (recall they refused to cover Ellie's hospital stay and manometry last month).

Hanging out at the Dentist

Finally, Bear had a blast at the dentist.  I don't know why other than the toys and getting her own tube of toothpaste.  She was fabulous until it was time to floss.  It took two of use to hold her down, but she was great for the exam, brushing, and fluoride treatment.  If only she was that good at home!

As for me, my uterine ablation from last mont failed.  I am looking at a hysterectomy come November.  I am not looking forward to this.  It is a big decision and I flip flop back and forth between going through with it.  It is a 6 week recovery which should be interesting while caring for Ellie.  I will definitely need help.




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Where to begin - manometry results and surgery

Oh where to begin.  I feel as though this blog has basically turned into medical updates for Ellie.  I apologize for that.  Please do not think there are no positives in our lives. There are!  How about I start with some of the fun, exciting things?

Ellie is trying to talk.  We don't always understand what she wants and if Drew doesn't get it he says "go ask mama".  If Ellie doesn't know the name of something, she says "ish" [this].  Usually she is pointing in the general direction and we have no idea just what "this" is.  The other day she said as clear as day "help please"!  She also has this flashcard with a clock on it.  Guess what she says?  Come on, guess?  Cock!  I shouldn't laugh, but well, it is funny.

Ellie is a big fan of bubble baths.  She constantly says, a clear as day,
"MORE BUBBLES"

Now that summer is underway, Ellie will be starting swim lessons.  We go to this amazing instructor. She teaches children who have special needs as well as their siblings in her backyard pool on a 1:1indiviaual basis.  Ellie made more progress in her first lesson last summer than in 6 weeks at group Y lessons.  She always wants to swim, but gets scared when the water goes above her waist.  I may have flashed a few people at a kids pool party when Bear clung to me like a spider monkey and pulled my suit down.  Whoops!  Not everyone wants to get a full show of my saggy boobs.

Horse therapy has been moved to earlier in the day to avoid the hottest time of the day.  Her beloved horse, Charlie, has been retired as he is considered "elderly" in equine terms.  She has been riding this sweet horse, Jake, and it has been going well. Jack has been taking a break this summer from therapy sessions which means Ellie is rather reluctant at first to get on the horse.

Here she is trying to make the horse go "fast fast fast"!

Playdates!  The nice thing about summer is the flexibility and free time.  We have been aiming for weekly playdates with Jack and his sister, Maggie.  You all know how much the Bear loves her "Hack".  This also means I get a much needed coffee gab session with their mama and my dear friend, Sheryl.

Onward to the medical stuff.  Bear with me her as I try to explain this in layman's terms.  Recall that 2 weeks ago was hospitalized for a series of tests.  One of which was a colon manometry, which looks at the motility (movement, peristalsis) of the colon.  Another was an upper GI which looks at the esophagus, stomach, and duodenum (upper portion of the small intestine).

Upper GI:
She continues to have esophageal gastritis, which is inflammation of the esophagus and stomach.  The biopsies revealed she is more inflamed that what was seen by the naked eye during the endoscopy.  She has been started on carafate (for ulcers) and will continue her protonix.  Here's the not so exciting part, the carafate's #1 side effect is. . . you guessed it! Constipation!  Yes, I am not kidding.  Consti-freaking-pation.  Because, you know, she needs more of that.

The biopsies again ruled out: celiac disease, lactose intolerance, and H. pylori.

Colon Manometry:
Basically test this looks at the colon contractions without food in the gut, after eating, and after stimulant laxative administration.  You can tell if it is nerve related or smooth muscle related.  Ellie's  manometry showed that she has low-amplitude decreased contractions.  Essentially, the smooth muscle of the colon wall doesn't not contract enough.  This means that her colon has trouble pushing stool forward and as such allows more water to be reabsorbed into the gut thus causing the stool to become harder.  Eventually, with chronic constipation, the colon stretches out which makes it even more difficult to push out stool.  Essentially, chronic constipation worsens constipation.

We learned that Ellie's colon has absolutely no response to the stimulant laxatives.  This is explains why all the medications she is on do not really help.  Before getting the official results of the manometry, we were to do a trial of high dose SennaLax (she was on a 1/2 dose before) to see if it would work.  It did not.  She was in so much pain on Tuesday and Wednesday due to being unable to go.  Crying, moaning, and clutching her stomach along with having a fever.  Perhaps a bit of colitis secondary to constipation?  It was the worst I had seen her in a long time and I was ready to take her to the ER when I couldn't get the enema fluid in at first.  I finally got the enema in and it helped, but we cannot keep violating her like that.

Anyway, when the doctor called with the results, we were referred directly to pediatric surgery.  Three surgical options were discussed, but both GI docs and Drew and I went with the one that would be most appropriate for our family.  (As in an ileostomy would not work because Drew wouldn't change it and Ellie would remove the bag getting liquid poop everywhere.  I'd be performing 24 hour surveillance.)

We are going with the Malone Procedure or ACE which stands for antegrade colonic enema. Antegrade means "above".  Enemas traditionally go through the rectum and only clear out the lower portion of the colon and do not affect higher up.  This doesn't truly treat the constipation.  By shooting an enema at the beginning of the colon, the colon can remain flushed and clear.  Plus, Ellie could come off all her laxatives and perhaps her urinary retention would be resolved. To do this, the appendix is brought to the surface of the abdomen and a button is placed (called an appendicostomy).  A saline enema is administered through the button It is scary, but we have learned that all the laxatives in the world, dietary measures, natural remedies, and behavior management are not alleviating the constipation.

Photo: www.nationwidechildrens.org

At this point, we have been referred to a different urologist to the one that we already see.  He is the one who will perform the surgery.  His medical assistant has been out all week and they are not sure if they can work her in.  Their first available appointment is in nearly 2 months.  Then who knows how long before surgery is booked.  I was really hoping to have this done before school starts, but it isn't looking that way.

A week ago, I had my surgery and it went well. The recovery period was only 3 days which I am relieved because I was told to allow up to 2 weeks.

So that's the big scoop.  Life is never dull in the Theurer household.



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The Return of Ellie Bellie Bear : Updates all around

Two months!  Yes, I have been gone for 2 months, but that is because we have been busy.  Both a good busy and a crazy busy!

I'll start off with Ellie is doing very well. Since Bear had her airway surgery back in November for sleep apnea (lingual tonsillectomy and glossectomy), we have seen progress in various areas of development.   We believe that is because her sleep quality has improved because prior to her surgery, Ellie maintaining oxygen saturations at 80% while sleeping.  Normal is 98-100%.  This means that her brain was not getting enough oxygen, which obviously leads to several health issues.

Since her surgery, Ellie has gained nearly 2 lbs and has grown in height!  Happy dance!  Her sleep pulmologist theorized that part of Ellie's failure-to-thrive was related to her apnea.  Unfortunately, she is still quite underweight each pound is a battle - to  gain and maintain - as her GI issues also play a role.

This brings me to speech!  I kid you not, remove the lingual tonsils, de-bulk her tongue and Poof!  the child is trying to formulate more words.  This child is cursing like a sailor.  Yep, she takes after me.  I knew I should have curbed my cussing around her!

A typical Ellie conversation: (please note that the Bear does not know how to modulate her voice so it is all practically shouting)

Ellie: F*ck!  F*ck!  F*CK!
Me: You want to ride in the TRUCK?
Ellie:  F*ck *ss! [Truck Yes]

In a restaurant:
Ellie: F*ck F*ck F*ck
Me: What?!  What?!  I see no truck.
Ellie: F*ck (signs fork)
Me: Oh you want a FORK!
Ellie: *ss

I'd love to tell you all that I am embarrassed by her crud words, but really, I struggle not to laugh.  It is funny. She is trying so very hard and I am proud of her.  I just loudly repeat back what she is trying to say so that the people around me recognize that my kiddo is really a "polite little angle". *snort*

GI Issues / Upper Endoscopy Results:

Well goodness, I left you all hanging with the upper endoscopy and ruling out celiacs and whatnot.  You know how you go in expecting to find something, but instead come across something different?  That is Ellie.

The gastroenterologist took 7 biopsies from Ellie's upper GI tract - esophagus, stomach, duodenum (upper portion of the small intestine).  Celiac's disease, lactose intolerance, and H. pylori were all officially ruled out.  He did, however, find marked inflammation of the esophagus and stomach.  He has no explanation for this other than perhaps it is lingering gastritis from a prior infection or maybe a side effect one of her medications.

Here's my thought - July 2014, Ellie stopped eating.  Just stopped.  She was taking in approximately 300 calories a day.  She would get a bit better and then her appetite would disappear.  In July of this past year, we started her on Periactin, which is an antihistamine that also works as an appetite stimulant.  Fun Fact: antihistamines decrease the release of histamine.  Histamine regulates the release of gastric juice.  As a result, antihistamines (such as benadryl, Periactin, Zyrtec) can help with nausea.

Anyway, my thought is that The Bear's esophageo-gastritis started back in July 2014.  That her inflammation was so bad that it hurt to eat. So, she basically stopped and then lost a lot of weight.  Nonetheless, she is on Protonix, a proton pump inhibitor, which is used to treat reflux and ulcers.  This will allow her stomach and esophagus to heal.  She has just one more month on the Protonix and then we shall see how does.  We have several GI appointments coming up with 2 different doctors as Ellie is still battling severe constipation and we have plans to do more extensive testing come June.

Semi-related to GI, for the past 5 days, Ellie has been peeing 2-3 x day.  This is a marked improvement over her peeing every 24 hours.  Like her urologist, I do believe the constipation does contribute to the urinary retention.  Yet, I do wonder if some of her medications also play a role.  Nonetheless, I am hoping that we can start working on potty training soon because it is time to say good-bye to pull-ups!

Back to sleep - yeah, I know.  I already waxed and waned about the sleep.  Sleep is so important and if Ellie isn't sleeping, no one is sleeping!  Bear decided to return to her old habits of early awakenings for most of late December into February. This was the whole waking up at 2:00am and partying until 7pm that night.  Do you know what sleep deprivation does to a child?  It is like ADHD on steroids.  It is as though I never gave her the Adderall.  She is wild, impulsive, inattentive, and irritable!  There were several phone calls to the sleep pulmonologist and a visit in there as well.  We finally seem to have a handle on her sleep, which has made a world of difference.

Fun Stuff:

Spring Break was a grand ole merry party.  First up, Ellie had a repeat sleep study.  Because we know how to have a great time on spring break!  Her sleep pulmonologist and airway ENT want to see how things are going after her surgery.  Ellie was a rockstar! Oh yes, she fought us tooth and nail with each electrode being placed, but she was able to calm herself down in between.  She also SLEPT!  We do not have the results yet, but I am feeling pretty positive.  Yikes!  I hope that I didn't just jinx everything!

Aside from all these fun medical things going on, Ellie has been enjoying her weekly horse therapy sessions.  She is getting better at guiding her horse using the reigns and saying words.  She had a dance recital last month and actually danced.  She did not run off stage.  She did not try to crowd surf.  She did not try to break dance like last year!  Ellie went with her kindergarten class to the children's museum and did great - meaning she didn't run away from her aides and she played nicely with her classmates.  All in all, even with all of the medical issues that the Bear is experiencing, she is thriving and happy!





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An End to an Era

I have known for a little while now that when their lease is up, our local Quiznos will shut its doors.  For at least 6 months, they have been the only business in that strip mall and with the owners' other business, Moonie's Burgers in North Austin, taking off, it is a savvy business move for them and their family.

Taken at one of our last visits.

It may seem a little ridiculous that I am dedicating another blog post to a sandwich place.  I mean, yes, there are sandwiches, but it is so much more! We have been visiting Quizno's weekly for nearly FOUR years.  Many things have happened at this Quiznos.  Things that have been of utmost importance to Ellie's development and to my sanity.

We started going there back before Ellie could even hold herself upright independently in a high chair. Goodness, in the beginning she didn't even eat there because she couldn't have anything made in a plant that processed oats.  Instead, we would accompany my friend and her two children there for lunch.  Eventually, things evolved it became a weekly, post-therapy ritual for mother and daughter to dine at Quiznos.

This picture of Ellie has been hanging behind their register
for the past 2 years.

After my daughter's oat allergy resolved, we introduced to her gluten, only she never wanted anything to do with it.  It was at the Q that she first tried a flatbread sandwich, but only ate the flatbread.  This went on for a while and she then would have a cheese flatbread with the cheese and bread separated out.  You couldn't cut the flatbread.  Oh no, because then it is "broken".  The cheese and bread couldn't touch each other either. Everyone at Quizno's knew her food idiosyncrasies and every new employee would learn them pretty quickly.

We can spend big money for therapies and spend a lot of time chauffeuring back and forth to speech and OT, but sometimes it is the day-to-day actives can produce the biggest milestones.

My daughter placed her 1st food order about 2 years ago with prompting.  She signed "sandwich cheese cookie please".  Later, she was able to order cookie verbally .  That's right, the very first time Ellie said "cookie" was at the Q.

The Bear dragging her bright blue penguin to the bus stop,
a Christmas gift from the Quizno's family.

Later, she drank from a straw for the first time ever at Quiznos.  She held the big cup buy herself in her tiny little hands and was able to purse her lips and get proper closer around that red straw.

After paying for our order, I would tell Ellie that we need two straws and count them out.  I have worked on teaching Ellie numbers and counting in general, but I never really knew if she was getting it. Then one day, I told Ellie to get me 2 straws and she brought two straws!  It may not seem like much, but this was huge!

This past summer, when Ellie was on a starvation diet an only consuming a handful of calories a day while losing weight, I would talk her to Quiznos.  She wouldn't eat much during that time, but she did eat.  It was the one motivator that I know would work.  Eventually she started eating again and we were able to introduce chicken to her diet.  Chicken with pesto.

Ellie with the owner's husband who was helping out that day.

The greatest blessing of all, is the Quizno's family. When you visit a small business weekly for 4 years, you start to know the owners and the workers. You also get to know their kids.
Ellie wiggled her way into their hearts and I was able to have enjoyable adult conversation.  I really do love being a SAHM and it truly is a joy, but sometimes it can be rather lonely.  Eating at Quizno's was like a social event and a fun one at that!

Ellie eventually switched from cookies to brownies.

I do not know how I am going to break this to Ellie. Nor if she will understand.  We went to the Q the other day after her therapy not realizing that they cut back their hours for this last week.  They were closed.  I showed Ellie the darkened store and had her try the locked door.  She started to cry.  She started to sob as I buckled her into the car all the while pointing at Quiznos and signing "sandwich".  Then as I pulled out of the parking lot, she lost it.  We pass Quiznos along the way home from horse therapy and I imagine that I will be finding an alternative way home for the first few weeks that they are closed.

Good bye Quizno's and thank you for all you have done for our family.  We will miss you, but I imagine Moonie's Burger will become our new hang out.

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