Sunday, January 25, 2015

The Sleep Study.


Last week, Ellie had her overnight sleep study at the children's hospital.  We had this private room with a hospital bed, a rather uncomfortable love seat that can apparently turn into a bed, and a bathroom.  We also had all sort of monitors, wires, electrodes, nasal canula with a sensor on it, and  camera that records the ongoings in the room.  Good thing I didn't pick my nose while I was there for all to see on video!  Just kidding!  One has to have a bit of humor to survive these things.

A sleep study or polysomnography sounds pretty benign, right?  After all it isn't invasive.  There is no scalpel cutting into you. . . yet in order to record brain waves, measure the oxygen levels in the blood, monitor heart rate and breathing, as well as recording eye and leg movements during sleep, there are going to be an awful lot of wires, electrodes, and devices.  Which brings me to--how on earth does patient actually sleep during a sleep study?



Loaded with her iPad, blankie, a fresh pack of Princess flashcards, Eric Carlisle books, a wooden kitchen spoon (I have no explanation for that), and her little baby doll,  MacGyver Bear was ready for anything.

Even though your bambino is the one with all the fancy wires, don't expect to sleep either folks!  First off, the chances that your precious child will fall asleep are 50-50.  If she's awake, you're awake. Plus, by the time they get your child all wired up, it will practically be your bedtime.  If you opt to sleep on the fold out sofa, yeah good luck with that.  I slept with Ellie and it was like sleeping with a bed hogging ninja.  Seriously, Bear, you just had to sleep diagonal in the bed?  Say that you do actually get comfortable, prepare for the lab tech to interrupt the Sand Man every 30 minutes as she attaches more tubes and wire or readjusts ones that or there or my personal favorite, the respiratory therapist comes in to sneak a finger poke.  Right, because a child can sleep through someone pricking her heel with a  needle and then milking that foot like a cow to get enough blood for the blood gas they want to run.

Now that I got that out of the way, here is what actually happened with us.  On the day of the study, Ellie had school, OT, and ST.  That day she decided she wanted a nap.  I kid you not.  She said "mama" and signed "bed"!  After all of these months and girlfriend wants to take a nap on the one day we need her to sleep at night.  This mama bear did not allow it!

We arrived at the hospital at 7pm and she was so tried.  The sleep lab tech didn't get us from registration until 7:45pm.  Over the next hour, Ellie has electrodes placed on her legs and chest and had these belts strapped across her.  As you can imagine, Ellie was not a big fan of this.  She fought in the beginning, even with the iPad, but once I had Ellie imitating everything on her little baby, she tolerated just fine. . . until we got to her head.


There are 15 electrodes that go on the head.  First, you have to actually measure the head and then measure from various points once the first few electrodes are attached.  So essentially, the tech has measuring tape with a red wax pencil to mark the spot on Ellie's scalp.  Then, conducting gel is applied.  Then the electrode placed.  Finally, a piece of fancy tape with some fancy, stinky glue is place over the electrode.  Repeat 14 more times.  It didn't matter that I brought the iPad, little baby, the wooden spoon, blankie or even the brand new package of Color Wonder markers and the brand new package of flashcard, Bear became a rather distraught tornado of destruction.  The lab tech was very good and patient, but when Ellie doesn't want to do something, she has the strength of a gorilla.

When Bear had enough, at this point it was 9pm, we decided to let her fall asleep and then she would try to do the back of her head, facial electrodes, and the nasal canula.  I pretty much rolled my eyes at this.  I mean, come on!  Who could sleep through that?  I was wrong.  Apparently, my daughter can.  I guess that is was happens when you are that tired.

My biggest fear was that she wouldn't sleep and yet she did. . . for hours at a  time!

I learned a few things during this sleep study:

From 9pm-12:30am she did not move.  At all.  She stay in the exact same potion--on her back, hands under her bottom and her legs criss-crossed. Not comfortable looking at all.  How she managed to do that without getting a bed sore is beyond me.

Right at 12:31am, Ellie became extremely restless.  She was pulling up her legs and shaking her head side to side.  It was as though she couldn't get comfortable.  This went on for the rest of the night.  She never really settled back down, but she stayed asleep.  I do not find it coincidental that this started at 12:31am and Ellie's early wakings tend to start between 12:30am-3:00am.

My daughter doesn't love me.  Well maybe not, but she does talk in her sleep.  Periodically, throughout the night, Ellie would utter "dada da dada da".  "Dada".  I see how it is.  I am the mean mommy who holds her down and Andrew is the good parent.  Daddy's girl!

My daughter has manners.  She may not always follow directions and sit still, but she does know her please, sorry, and thank you.  Early in the morning, the male RT came in to poke her heel for a blood gas.  Ellie, still mostly asleep, sat up and said "dada. Thank you. Thank you.  Bye bye".

My husband is awesome.  Andrew managed to escape spending the night in the hospital, but he did chauffeur us back and forth because my back pain skyrocketed and I was too sleep deprived to drive safely.  He showed up at 6am (which is ridiculously early for him) bearing gifts of donuts and coffee!

She is actually quite happy in this picture.  Daddy and a donut with sprinkles.  What is not to like?

Not to worry! The Bear may have looked miserably tired, but about 2 hours later, girlfriend was ready to go in all of her Ellie Bear Fashion Glory.

Elephant sweatshirt with coordinating elephant pajama pants.  Layered with a Hello Kitty hoodie.
The look is completed by a knit pink headband with faux seed pearls and Batman Crocs.
Entourage: play blood pressure cup and tweezers, scrap Hello Kitty flannel fabric
Princess Tiana barbie doll, Andrew's socks, and 1 baby washcloth.

In case your child ever needs a sleep study, here is what I recommend bringing:

Kiddo:

  • 2 piece pajamas (no footie or one-piece)
  • socks
  • diapers/wipes
  • toiletries
  • change of clothes for the next day (we actually didn't bother with this)
  • items your child usually sleeps with-lovie, dream lite, comforter, pillow
  • favorite bedtime book
  • iPad or toys for distraction (I brought NEW flashcards and Color Wonder to up the excitement)

Parent:

  • Xanax. . . again kidding!
  • Pajamas/yoga pants.  A spare set of PJs or shirt.  I always get something nasty on them like blood or in this case snot and electrode glue
  • Hoodie because it is cold
  • Socks, preferably fuzzy
  • Clothes or the next day
  • Toiletries
  • Book for myself--this was my "just in case Bear false asleep and I am not tired" item. 
  • Snacks/water bottle


Tips to remove electrode glue and adhesive:

Ellie looked like Beetlejuice after her sleep study.  Her hair was tangled, matted and every which way with glue that actually resembled plastic being moulded to her scalp.  She had massive patches of adhesive on her legs, chest, and below her left ear.

The tech gave us some adhesive remover wipes which did nothing and then recommended nail polish remover for her hair--say what????  Obviously I took Bear's hair dilemma to Facebook.

Face and body: rubbing alcohol, coconut oil

Hair: coconut oil massaged into the scalp and washed out, spray sunscreen, Dawn dish soap as a shampoo, and peanut butter.

The rubbing alcohol removed most of the residue, but not all of it.  I used a wash clothes with baby shampoo to get the rest of it.  There is still some there, but I figure that will wear off eventually.

I brushed out Ellie's hair after a major washing only to realize so much gunk was still adhered to her head.  I worked in coconut oil as much as I could along with a leave in detangler.  After rinsing to the best of my ability (remember the Chunky Chicken hates having her head touched), I tried to work out the softened chunks of glue from her hair.  Some of it is still there and I am going to pretend that I really care.

So now. . . we wait for the results which takes about 2 weeks.
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Sunday, January 18, 2015

Sleepless in Austin: The Sleep Clinic Appointment

This post was meant to be published at the end of last week, only it disappeared into the blogosphere so I am starting over from scratch.  Actually, it was a post about the DIY oak bench, but you all were really due for another sleep post.  

I have no idea where she comes up with these fashion ideas
As for the bright blue penguin, yeah, I have no explanation for that either. 


I really feel as though this has been going on since the beginning for time, but really just since this past August.  You know, only FIVE months!  So what do you do when you cannot catch enough shut-eye?  Post a ridiculous amount of coffee memes on Facebook in hopes that you will absorb copious amounts of caffeine by osmosis through the computer screen.  Obviously.




You know that feeling you get when you feel like your head is full of sticky marshmallowy fluff and every bone in your body feels like lead?  That feeling of if you even try to function you will fall flat on your face and cry out “I cannot go on like this!” from that deep pit of despair?  Yes?  Yes?!  

Thursday was my pit of despair.  Who am I kidding? So was Friday.  Ellie’s early wakings finally  caught up with the two of us.  I am so fatigued that I cannot even remember where I left off last!  

Ellie and I stayed up "late" on New Year's Eve

Clonidine.  That’s right.  After a week of not hearing from Ellie’s neurologist, I got a text from CVS stating “ELLIE your prescription is ready for pick up”.  This is how I learned that we were going to start using clonidine to help Bear sleep (and stop her Tenex).  It was nearly a full week after I picked up the prescription that the neurologist’s nurse called to tell me that we need to switch Ellie to clonidine.  My confidence in the neurology department was minimal at best, but well, there is really no need for me to finish this sentence.

The Neurontin did not help at all and in fact, it made her have great difficulty falling asleep.  Once she was off of that, she returned to falling asleep relatively easily on most nights.  At first, we thought that the clonidine was helping somewhat. . . until it wasn’t.  Maybe it was the flu that gave us false hope that Bear’s days of early rising were behind us because once she was back in tip top shape, 12:30am, 2:00am, or if we are really lucky, 3:30am were her wake up times.  

With the amount of physical activity this child get, you would think she would sleep great.


I suppose I should be clear.  This does not happen every night, but rather 3-4 times a week with no discernible pattern.  I say this with confidence since I started a sleep log back in November. When Ellie wakes up at 12:30am, she does not fall back asleep again until 7:00PM.  You know, at night.  As in she is up for way too many hours.  It does not matter what time we put her to bed and no, she does not nap. I want to nap. Badly.

The new part: Ellie is now missing school because she is so emotional, agitated, and tired that I cannot possibly send her to the classroom.  I know that I touched upon the affect lack of sleep has on her behavior.  Sort of like her ADHD on steroids.  It is almost as though I didn't give her Adderall.  She is not doing well in school.  My Ellie, she is capable of so much and we get glimpses of that on days when she has a sufficient amount of sleeps.  When we can see her awesome potential.  Yet, the other 50% of the time, she is trapped in a vicious cycle of oral seeking, jumping, impulsivity, inattentiveness, and grabbiness.  She cannot function at school and on those days, she is actually removed from the typical pre-k classroom.  As we begin to plan for her Kindergarten placement, we are having to take into account both sides of Ellie: rested Ellie and sleep-deprived Ellie.  The sleep-deprived Ellie is holding her back.

Yes, she is always this perky in the morning.

This past Wednesday was THE Sleep Appointment!!!!  An entire clinic dedicated to all matters of SLEEP!  After 2 months of anxiously waiting, Ellie had her consultation with a pediatric sleep specialist. As you can imagine, a sleep study has been ordered.  The surprising part?  She will have her study THIS WEEK!  In all honestly, I thought that we would have to wait a few months.

I miss this.  Ellie used to be such a good sleeper.

There are a few theories here:

1. Kids with neuro-psychiatric disorders such as ADHD, autism, and SPD have a higher rate of Restless Leg Syndrome and Periodic Limb Movement.

2. Kids with Down syndrome are at a higher risk for obstructive sleep apnea.  This risk is still high even if the tonsils and adenoid have been removed.  If Ellie needs a CPAP, we are in big trouble.

3. When this first started, Ellie was getting over a sinus infection.  At first, I wasn't too excited because sinus infections can affect sleep.  A few weeks later, I didn't think too much because school just started.  Yet, here we are 5 months later and it all goes back to that sinus infection.  I am not sure how it all works, but there is the possibility the virus triggered something. 





The original "sleepless in austin" post.
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Tuesday, December 30, 2014

Changing the Face of Beauty and #IMREADY

Something big is on the horizon for 2015.  In November, this beautiful little peanut appeared in Target's catalog.  So many people are talking about how lovely this little girl, Izzy Bradley, is playing with that large B toy.  What if more retailers were to feature children with different abilities?  



Changing the Face of Beauty is a campaign aiming to recruit 15 major retailers to feature people with disabilities in their advertising during the year of 2015.  YOU can be a part of this!  

How? Go to the Changing the Face of Beauty's Facebook page to share a picture of your loved one and tag with #IMREADY #changingthefaceofbeauty.  You can share your picture or the Changing the Face of Beauty campaign on other modes of social media--Instagram, Twitter, Google + or  on your personal Facebook page.  Be sure to tag some major retailers that matter to you in your post.

This campaign is already working for in an ABC News article, Infantino Toys states " "We are committed to using models that reflect the same diversity you see on a playground. Check out our Facebook page to see our cutie cover model, who is rocking her extra chromosome." 

infantino's Facebook cover.  She is quite the cutie patootie 


Continue to spread the word so that more retailers like Target and Infantino "reflect the same diversity that you see on a playground" !



I don't know about you, but Ellie says "Hey Kohl's and Gymboree, #IMREADY for change.  We want YOU to include models with disabilities in 2015.  We want YOU to be part of the #15in2015 . 15 retailers including models with disabilities in 2015.  We know you see us.  Represent us."

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Sunday, December 28, 2014

Merry Christmas, Happy New Year and Influenza

It is December 27th.  Just a few days left in 2014.  As I click through the photos that captured our Christmas celebrations, I start to look back over the year.

As with any family, there are ups and down.  Triumphs and heart break.

I am going to gloss over the trials--Ellie's gastrointestinal and sleep issues, my torn hamstring and chronic back issues, my canceled trip to see my best friend, Andrew's wisdom teeth removal, my good friend's cancer diagnosis--and focus on the joys for 2014.



Nearly 1 year ago, Andrew left his long-time job at IBM to take a position with Red Hat, Inc. (I have no idea what exactly he does, but it involved tech stuff).  I was excited by the prospect of moving to the Boston area.  After all, I moved to Texas from the East coast and my best friend lived just an hour away.  Andrew was elated he found out that he could telecommute.  In mid-January, Andrew packed up his office and relocated his place of business to  . . . our dining room.  I so did not win the "let's move to Boston" argument, but Andrew is much happier now that he can roll out of bed and go to work in his PJs while working for a company that he loves and believes in.

We celebrating an early Christmas with my parents. 

Andrew also started to work on a bench to go with our kitchen table.  After 11 months, this large, gorgeous oak bench with tons of storage was finally completed and it made its home in our kitchen just 2 weeks ago.  Andrew really has a talent for architecture and wood-working.  There will be a future blog post on Andrew's DIY activities and believe me when I say you will be impressed!

The year of 2014 is the year that Ellie started to really communicate with us and all around her.  Andrew and I started to see changes in Ellie around February and since then, her communication skills have exploded.  Her signs are more fine-tuned.  She continues to make up signs, which confuses us until we finally figure them out using our powers of telepathy.  She is trying to vocalize.  In fact, with prompting, The Bear can say "I want red juice, please"!

We spent Christmas day at my BIL/SIL's new house in Celina.
For once, Ellie didn't run away from me at picture time.
To avoid the stink-eye, I tickled her.

Over the summer, The Chunky Chicken rode a horse for the very first time.  We thought that she would be scared seeing as she was petrified to go near a horse, but she was a rockstar.  Now, every Monday evening, Ellie has horse therapy.  She tells us "horse" and "key key" [donkey]. The changes that we have seen in Ellie are remarkable and I know that horse therapy is one of her favorite things to do.  Dance classes started back up this Fall and with it, Ellie's gross motor skills have progressed.  She is also imitating everything! She also has several of her own "fashion" posts--on this blog, Instagram, and Facebook.  Oh and did I mention that my BABY turned 5 years-old???

A very sleep deprived Ellie was an ornery little thing at her
classroom Holiday party.  She dumped plates of fruit onto the floor and shook her juice
onto the table.  However, when it came time for the piƱata, she waited her turn!

As for me, I got my life back on track.  After years of yo-yo dieting and suffering from poor body image, I finally took control of my life and lost almost 30 lb.  In April, I participated in a 21 Day Fix challenge and I saw a significant change in not only my body, but also with my mental health, sleep, and energy levels.  I then decided to do something that was both exciting and scary--I became an Independent Beachbody Coach and run my own health challenges that focus on physical activity, clean eating, and mental health.  These past few months have been both exciting and challenging as I am now self-employed and trying to figure out the home-work-family balance.  This year, I will not be making the resolution to "loose weight", but rather focus on loving myself, becoming stronger, and creating healthier versions of my favorite foods.

Ellie was a little overwhelmed by all the presents at my in-laws' house.
She also didn't understand that some of those presents were not for her.
Well, maybe she did understand and just didn't care!

In May, our little family went to Madison, Wisconsin for a family vacation.  We stayed with my parents in a rented cabin along Lake Kegonsa.  The weather was gorgeous, the scenery was beautiful, and the company was the best.  After a week in Madison, we headed on down to Rockford, Ill where I gained a sister!  That's right, my baby brother Matt finally found a woman to put up with him.  Amber is the sister that I have always wanted and I am so happy that Matt finally got around to proposing to and then marrying her.  I would have been really unhappy if he let her "get away"!  Goal for 2015: convince the Bruns family to move to Austin.



A few weeks ago, my parents came to visit our little Austinite family for a week.  Mom and I got to see Trans-Siberian Orchestra, which was full of complicated guitar and electric violin rifts, amazing vocals, pyrotechnics, laser lights, and creative stage scenery.  I do hope that we can make Trans-Siberian Orchestra a tradition.  Of course we did our usual baking cookies with my mom, dining at Z-Tejas, and visiting Santa Claus.



Andrew, Ellie, Sophie Dog, and I made the drive up to Plano, TX to visit Drew's side of the family for Christmas.  The car ride up there was very difficult since I haven't been able to drive more than 20 minutes due to my back, but Ellie was very chill in the back seat.  As opposed to her usually screaming after 2 hours in the car.  We had a really nice visit with my in-laws complete with Dunja's awesome cooking, Charles delicious pies, and movies!  We finally saw Gone Girl.  Mama Dunja and I had a hard time holding it all in since Drew and Papa Charles didn't read the book. We also got to see most of my nieces and nephews and one of my great-nephews!  The drive back was excruciating and required frequents stops and limping (sciatica sucks), but I do not regret making the trip.  In the Theurer household, nothing is more important that spending time with family.

We spent Christmas Eve and Christmas Day in Plano.  Ellie got a kick out of
Grandma Dunja  showing her the camera.


True to Ellie Bear form, 2014 is ending with a BANG!  Ellie was just diagnosed a few hours ago with Influenza A and an ear infection.  Girlfriend certainly knows how to ring in the New Year!



*The photos in this post are from: Breakfast with Santa at North Austin Mother's club, Holiday Party at Ellie's school, Lakeline Mall Santa, Christmas with my parents, and Christmas with Andrew's mom and step-father, et al.

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