Monday, April 14, 2014

Lily's Everything But The Kitchen Sink Surgery - Part 2

One of the hardest things to do as a parent is to watch your child suffer through something medical while wishing with every fiber of your being to trade places with them so they may not experience any pain, trauma or fear.  It breaks my heart the things my brave little girl has had to endure during her short lifetime.

So once again at the crack of dawn on Wednesday, we will be heading over to the Children's Hospital for another jammed pack surgery morning for Lily.  Just last November, she had her first multiple speciality surgery and did very well (Lily's Everything But The Kitchen Sink Surgery - Part 1).  Even so, I dread putting Lily through another surgery, but we have little choice so as to keep her health optimal in addition to doing any maintenance procedures she can no longer handle awake due to her extreme anxiety with anything involving a doctor, nurse or a hospital.  This will be her 11th surgery.  :(

Her ENT will be placing ear tubes in her ear canals since she's had multiple double ear infections since her previous tubes fell out last year.  Her last known ear infection was in January which triggered the horrible allergic reaction called Stephen Johnson syndrome to the antibiotic Omnicef.  Thankfully, we caught it early enough to treat with steroids.  They are also going to perform a sedated hearing test on her.  I don't really see a hearing issue except for maybe selective hearing, but decided it wouldn't hurt to confirm.

Next, her orthopedic surgeon will be removing the steel plate from her hip at this time too. We removed the pins over a year and a half ago, but left the plate. We recently went to her orthopedic surgeon for a 6 month check-up and he mentioned it would need to come out at some point.  Lily is a very strong candidate for hip replacement surgery in the future (her 40's) and it can make things very difficult if a steel plate is in there for so long to do the surgery.  We mentioned to him she had an upcoming surgery with the ENT and so we all agreed to have him piggyback that surgery.  The orthopedic surgeon has assured us she should not have any issues with the removal of the plate and should be up walking immediately.  He said the plate is not holding her hip in place and her hip socket and femur are completely healed so she shouldn't have any problems whatsoever.  I pray he's right.  We are nervous about the whole thing, but I'm glad the hardware is coming out.  I'm also hoping they will be able to determine the exact leg length differences she has due to her hip surgery causing her right leg to be substantially shorter than her left leg.  Here's an X-ray from 2 years ago showing her plate and pins.  The pins were previously removed in Oct. '12.

We will also be having blood work done.  We are having the Down syndrome blood tests which include thyroid levels and a CBC.  We are also having her genetically tested for our newest diagnosis in the family of Ehler's Danlos.

Finally she will be having foot molds made of her feet so we can get orthotics made to wear in her shoes.  Her feet are turning to mush due to her low muscle tone and stretchy/lax ligaments and tendons.  Not a good thing in the foreseeable future if we want her to be able to walk as she ages.

I'm asking everyone for prayers and good thoughts for a smooth surgery, for Lily to especially have no issues with her hip and for her to wake up calmly from anesthesia.  We've had a few crazy rage filled wake-ups over the years, but thankfully they have gotten pretty good at controlling her reaction with a little Morphine in her IV.  Praise God!!


Wednesday, April 9, 2014

Spring Break 2014

Or as we fondly referred to it as Staycation 2014.  Matt took the week off from work, plus we took the entire week off from all therapies.  

  • We slept in.

...which made us all feel like Dasha looks in this picture. :)

  • We didn't rush to do anything or go anywhere.  

  • We attempted to potty train Leo....attempted being the key word.

  • We went to the zoo with about 10,000 other people on the only nice warm sunny day of the week.

Between the crowds and Leo flipping out and crying for no apparent reason (until I bought him a Sprite and an ice cream sandwich), I didn't take very many pictures.  Lily practically leaped out of her wheelchair to lean on the rail and gaze at the male lion (one of her favorite animals) who was up close and personal for the first time ever.

  • We celebrated 3 birthdays. 

Leo turned 5 on April 1st.

Leo loved his Lego Friends gifts we gave him.  He has no interest in Star Wars, Spiderman or any other boyish Lego collections.  But when he saw the very pink girly Lego Friends he was all over that.  Mostly because it is real life things like houses with lots of rooms full of real life items, cars, bikes, schools, bakeries with you guessed it cookies and cakes (Leo's fave!) and the Lego girls also look more like regular girls instead of the more blockish Lego figures.  Here's a link to Amazon if you'd like to see more:  Lego Friends

Dasha turned 11 on April 3rd.
Signing 11

Mismatched candles are a common occurrence here at our house.

I think our family was the last to finally watch Frozen.

The goal is now hanging in her room on her door.  She loves it!

Leo is spending more time in Dasha's new baby doll stroller than the baby dolls. :/ 

The birthday girls!  Moogie (my mom) and Dasha share a birthday.  #twins

  • We scoffed at superstition while dancing & twirling with an open umbrella inside.

  • We celebrated autism on World Autism Day on April 2nd.

  • We most likely ate too much fast food.

  • We definitely ate too much cake.

  • We watched Leo spell throughout the week.

  • We even got to hang out with cousins.

Silly and then sweet

But best of all we just got to be lazy and enjoy the peace of having nothing scheduled for an entire week.  :)

Below are a few additional pictures I thought you'd all enjoy.  Lily playing peekaboo, Leo loving his bath time, and finally Leo playing with an old (I think broken) frog band toy contently at my mom's house.  To see Leo playing contently with something for any length of time at someone's house was quite a big deal and a huge improvement because he's always had a difficult time visiting other people's houses for very long and usually starts crying to leave within 15-30 minutes.  Not so on Saturday.  Big change for my big boy and all I can say is YAY!


Wednesday, March 26, 2014

Leo's Trip To The Park

It was a cold and windy day, but very sunny so we persevered on another Exceptional Excursion for Leo outdoors last week to give him a little fun break in his otherwise busy autism therapy schedule.  We figured the fresh air and a little Vitamin D would benefit all three of us.

Even though I was shivering to death, Leo seemed unaffected by the cold.  There was joyous excitement exuding from his every pore with a permanent grin plastered on his face while he explored the playground.  His favorite by far was the blue swing.  I could seriously kiss the inventor of these awesome swings!


Then we headed over to the Confectioneiress to order our April Fool's birthday boy's special cake as an added bonus.

Of course we had to buy him a cupcake since they were delectably displayed right at Leo's eye level. :)



Monday, March 24, 2014

My Favorite Two Videos Celebrating World Down Syndrome Day!


Friday, March 21, 2014

3/21: A Day In The Life Of A Pair Of Girlies With Down Syndrome

Every day I get to wake up and see these two beautiful smiling faces.

The End.

Just kidding.  I'm participating in a Blog Hop for World Down Syndrome Day.  The theme is "A Day in the Life" of an individual or in my case individuals with Down syndrome.

So without further adieu, here are the highlights of Dasha and Lily's day:

Getting up in the morning Dasha rises with the roosters while Lily snores on...

Meals are easy with Dasha, but a tad more difficult with Lily.  She's Miss Pickypants.  Lily eats about 10 things and prefers all her food in the colorful range of beige.  I should note though Dasha doesn't do all.

Some days they go to both therapy and school.  (speech, occupational or physical therapy)

Some days they just catch a ride on the bus and head to school for the day.

Some days we have doctor appointments (Dasha and Lily aren't real excited about these days).

Some days are full of fun like going to the zoo.

Some days are crazy busy.

Some days we work really hard.

Some days we are just plain lazy (my fave!).

Dasha (our resident athlete) would love to play sports every single day.  Otherwise, she plays with her dolls and stuffed animals reenacting a Doc McStuffins episode. 

Lily would love to play on her iPad every single minute of the day.

Dasha loves to watch Disney with Doc McStuffin and Sofia The First with the channel Sprout becoming popular these days.

Lily pretty much watches Barney or Elmo on her TV via DVD's or on her iPad via videos or YouTube.  I'm fairly positive Barney is never going to leave this house.  Superdeduper!

I thought I'd share some highlights of my day having two daughters with Down syndrome:

Every day I get bear hugs of sweetness.

Every day I receive unconditional love from these two.  They don't hold grudges or stay mad..ever.

Every day I cheer them on as they strive to meet goals with school and life skills.

Every day I feel incredibly proud of their many accomplishments.

And every day I especially thank God I was blessed to be Lily and Dasha's mommy!


Sunday, March 16, 2014

Leo's Inaugural Trip To The Children's Museum

Last Thursday, we took Leo to The Children's Museum of Indianapolis for a "normal" preschool outing.  A little break from his usual busy therapy and developmental preschool schedule.  As we drove around the building to the parking garage, we spied some huge dinosaurs and pointed them out to Leo which prompted a cute little "Dinosaur" from his mouth.  He seemed to know we were going somewhere special and excitedly grasped hold of our hands while we walked over the skybridge from the parking garage to the museum entrance. 

Upon entry, we couldn't miss the giant yellow transformer named Bumblebee looming adjacent to the ticket office.  Leo mostly avoided direct eye contract with him while taking in everything around him.  Once through the entry turnstiles we encountered more dinosaurs at the Dinosphere exhibit that Leo quickly diverted us from (not impressed I guess with of a bunch of skeletal dinosaurs), a ton of trains in various sizes with some actually working while others in display cases in the All Aboard!! exhibit and even caught a glimpse of a few mummies or maybe a tomb while being tugged by the Treasures of the Earth exhibit.  Leo didn't dally.

Then we arrived at the Playscape exhibit and Leo was enchanted.  He slowed down and took it all in.  Water, music, sand, air, elevation, and many other exciting things enveloped his senses and he visibly relaxed while he enjoyed the many options of play.   

We stopped at the underwater pond habitat first.  He was initially hesitant, but then started testing the depth with his hands.  He grabbed a few things floating by and then almost climbed in so we quickly diverted him to the music room.

Daddy's musical abilities came in handy while he and Leo did the bongo drums together.  He also enjoyed playing the xylophone until he thought it would be a yummy idea to taste the mallet as if it was a giant lollipop (Blech!).


The climbing net apparatus was by far Leo's favorite.  He clambered up into the first opening and lost himself in the large intricate maze.  He looked so peaceful moving slowly around the various paths while choosing where he wanted to go.  For a kid that is always in motion, it was truly beautiful watching him.    

After quite awhile, we finally pulled him feet first out of the maze and led him to the sand table.  He and Matt worked at the slowly spinning wheel which held his attention for several minutes.  Leo would grab the sand in his hand and slowly release it from his grasp with a slight smile on his face. 

Here's a quick little video to give you a glimpse of Playscape:

Things Leo did NOT love at the Children's Museum of Indianapolis:

The carousel started a minor meltdown with Leo where we kinda had to force him to stay on the horse until the ride began.  Once the horse started moving, he stopped crying, but kept his ears covered with his one hand on one ear and his handy dandy shoulder earplug on the other. He made a beeline out of that area as soon as he exited the ride.

The beautifully restored Broad Ripple Park Carousel at the Museum
For more history of the carousel click this link

The final exhibit we attempted was the SpaceQuest Planetarium since Leo loves the night sky and sleeps to a nightlight ladybug that shines stars on his ceiling every night.  Our first hint it wasn't going to go over well was when we walked in, sat down and Leo looked around the very dimly lit room with great apprehension.  "EEeeeee's" and "UUhhhhh's were moaned while he contorted his body flailing his arms and legs trying to maneuver his way out of his chair and then our laps to make a break for the doors.  Matt got him a weird looking rock/crystal cherry sucker which calmed him for about 30 seconds.  The show began with Big Bird talking from the horizon as the sky lit up with stars.  Leo wasn't impressed and we quickly made our escape.

SpaceQuest Planetarium with "One World, One Sky:  Big Bird's Adventure

Look for another post of Leo's Exceptional Excursions soon! :)

photo credits of exhibits from the Children's Museum of Indianapolis unless otherwise noted are: