Pedaling My Worm to Nystagmus Eye Surgery

Today was eye surgery day! But first, I want to share something funny that came home in The Skink's school backpack on Wednesday.

School work! Yes - the kind of school work all kindergarteners have at some point... but with true Skink Style! You see, The Skink has a BIG sense of humor. It comes out when she's bored of the task at hand and has an irresistible desire to spice things up. Check this out - it's like Ad-Libs for kindergarteners!

I don't know about you, but I try to plant plenty of caterpillars in my garden, but I always warn them to watch out for those seeds that crawl through the dirt!

On a more serious note, today was eye surgery day! In comparison to The Skink's last eye surgery where both eye balls were basically removed from her head so every last eye muscle could be readjusted, this one was just a simple tweak.

The Skink was born with a very severe case of Nystagmus. We don't know if it was a result of her prematurity and low birth weight (2 lbs 7 oz) or an issue related to Down syndrome. It could have been either (or both) but at any rate, her case was really bad!

 The Skink - age 2. She had to tilt her head back as far as she could to make her eyes stop wiggling.

The initial surgery was done when she was 2 years old, and we had to drive up to Pittsburgh, PA because our local doctor wouldn't touch such an extreme case. The Skink saw the doctor who developed the surgery for Nystagmus. Upon finishing her surgery (which was scheduled between a kiddo who had been flown in from India to receive the procedure from this doctor, and another from Egypt) Dr. H***** announced that The Skink's was one or the worst cases of Nystagmus he had ever seen.

I love it when doctors are so encouraging like that!

Anywhoo - that first surgery worked miracles! While it didn't fully correct the condition, it reduced the rapid movement ten-fold. Prior to the surgery, The Skink had to lean her head so her nose was facing the ceiling to quiet her eye movement enough to look straight ahead... and after the surgery she only needed to tilt it a bit to one side.

 You can see how The Skink's left eye is about 2 mm higher than the right eye. Either that, or there's something up in the sky that she's only half-paying attention to.

The purpose of today's surgery was to lower her left eye by about 2 mm.

Last night and this morning we put drops in The Skink's eyes to dilate them - which gave her a great excuse to look very stylish on the way to the surgery center! 

(It would have been inappropriate to bring my big, new camera to the surgery center, so many of the following pictures were taken with my old Kodak Easy Share camera - which I can swiftly hide in my bra at the first sign of an angry nurse!)

 Walking with Daddy into the Surgery Center. Note the spiffy new cow backpack which is perfect for carrying...    cows.

Then, of course, it was time to hurry up and wait. But that was fine with The Skink - she started her own little dance party right there in the waiting room! Smart Daddy brought along a Victorious DVD, so after the dance party ended, The Skink enjoyed watching a bit of her favorite show. 

I had been really worried because the surgery was scheduled for 11:15 a.m. and The Skink wasn't allowed to eat or drink after midnight the night before... but do you know? She never once complained or begged for food! Apparently dancing was far more fun than eating! 

When we finally were taken to a room, The Skink was given some sleepy-juice... which she resisted with all her might! She didn't want to miss out on all the excitement!

Checking out the 2 ID bracelets on her ankle.

Can't... go... to... sleeeeeeeeep...

And then somebody came and took her - she wasn't asleep, but went along happily - eager to have a new adventure!

The surgery took about an hour and a few minutes. The doctor came back and said that everything went well (considering the scar tissue he had to work around) and said that her glasses prescription has changed just a little. She's slightly less near-sighted! Hooray!!

Do I look a tad tired?  I can't imagine why...

Juuuust starting to wake up. Feeling a bit cranky - but who could blame her?

And once the bulk of the grogginess from the anesthesia wore off, she set her sights (her slightly less-nearsighted sights) on Goldfish crackers and apple juice! It was really rather amazing just how happy she was once she really woke up!

Once we got home, she wanted to pose and make model-pouty-faces for the camera! Silly stinker!

See this? This is my good eye!

Children are amazing! While it looks like it would hurt like heck, this kid bounced around for the rest of the day - just as happy as could be. She ate like a horse and went right back to her regularly scheduled Skinkiness. Now I just have to figure out how to break it to her that I'm not sending her to school tomorrow looking like she was hit by a bus. She'll be horribly disappointed!

 Enjoy this blog? Let me know by voting on TopMommyBlogs! 

Follow the link and scroll down until you find Adasperdown Town.

*

Spring Break Travels - Special Needs Style!

 
Going on any vacation with kids is always an undertaking, but going on vacation with children with special needs can add a whole new level of excitement! I mean like getting-chased-by-a-rabid-bear excitement. And who doesn't need a little more excitement in their lives? (Or heart failure... ?)

Just over a year ago we took our saved-up money and purchased a really old previously enjoyed pop-up camper. On our budget, trips to Disney, Vale or *sigh* Europe are out of the question, so we decided that if we were ever to escape from the doldrums of  "Staycation" mode, camping trips were the way to go! It's pure awesomeness (if you like bugs and dirt... which I do).

This year Spring Break fell over both Easter and my Life Anniversary Day. (I'm way too cool to have "birthdays"... or admit that Father Time has been chasing me about like a lecherous old coot on a drinking binge) Hubby wanted to go to some nice hilly place with trees, but I wanted to go to the beach. Hubby doesn't like sand (a few tours in Kuwait will do that to a guy) so I gave him the puppy-dog eyes and he said "OK." I'm evil that way. I mean, what's a little PTSD between spouses, right?

So, we loaded up the Suburban with enough clothes and food to sustain a small African nation for a month and headed off to the PirateLand Campground in Myrtle Beach, South Carolina.

When arriving at a new campground, the second order of business is meeting your temporary neighbors. (The first order of business is running as fast as you possibly can with your legs crossed to the bathroom... but I think we all know that.)  First we met the people to our right. That's their grandson, 10-year-old Robert on the left.

Then we met the family directly behind us. That's their 10-year-old son Colton on the right. The Skink is in the middle. Yes... three beautiful kids with Down syndrome / Trisomy 21! Prior to this trip, none of us knew each other. What are the chances of something this cool happening on vacation? And with luck like this, why did I not win that huge lottery jackpot a couple weeks ago?

We played, colored Easter eggs and hung out with our new friends until it was time for Robert's grandparents to go play Bingo and Colton's family to go out for Krispy-Kreme doughnuts which I absolutely adore but will never have the pleasure of tasting again upon learning that gluten and I don't get along... at... all!

 

Leaving Easter egg colors for the fairies.

On Easter Sunday The Skink got to see the Atlantic Ocean for the first time... and feel just how cold it is in early April...

But everybody (with the exception of my poor hubby) was so excited, the cool temperatures didn't stop their fun.

While my children lounged about in their bathing suits, Murphy's Law dictated that I receive Mother Nature's "Gift" which I would have gladly given back. (Wouldn't have minded giving Mother Nature a big 'ol slap too, but didn't have the chance.) Don't I look right at home, fully-clothed on the beach? (Please note the fishing pole in the background which adds the comedic insinuation that I am getting very good reception out there! Beam me up, Scotty!)

After a couple of hours, Broadway announced that he was starving so I offered to make him a sandwich.

I don't think this was what he had in mind.

With temperatures in the '50's and low '60's over the next few days, visits to the beach were kept brief and were only done in jeans and warm jackets. But never fear! We did "other stuff" too...

...like playing with play-dough...

...Iraq having a meltdown due to "transition issues" associated with disrupting her regularly scheduled life... (not pictured)

...observing the local wildlife...

Squirrel Butt!

...Iraq having another meltdown...

...riding bikes...

...Iraq having another meltdown...

...coloring more Easter eggs...

With Sparkles!

...Iraq having another meltdown...

...coloring hair...

Don't you think the red brings her Devil  out nicely?

...Iraq having another meltdown...

...laughing at Mommy running on her goofy spring-shoes (hey - Tiggers bounce! What can I say?)...

...Iraq having another meltdown... 

...singing into hairbrush-microphones...

...Iraq having another meltdown...

...cuddling cows...

...Iraq having another meltdown...

...and making Magic!

I might add, this was The Skink's first time casting spells, and girlfriend had a BLAST!

Have I mentioned that Iraq had a few meltdowns? Any time her schedule is changed AT ALL, we can expect some (read: "a lot") of emotional issues. Many people in the autism spectrum go totally Chernobyl   dislike change... and Iraq is one of them. No matter how much fun we are having, she finds ways of fitting in a few mega-crying-freak-out binges along the way. My favorite this vacation was when we were in one of those touristy shops looking for some souvenirs. One moment Iraq was following me, and then next, she had disappeared into thin air. 

While most parents might have gone into panic someone-kidnapped-my-child mode, the Hubby and I calmly started searching through clothing racks. After about 8 minutes, Iraq was safely located cowering under a flock of parrot-print bathing suits. It took me a few minutes to extract her and convey my now-sobbing child out of the store, followed by the harsh stares of other shoppers (I love those looks. Don't you?).

If you've ever studied psychology (which I did, right up until I met the psychology professor from h311) you may have learned that the human brain will always try to find reason for emotion... even when there is none. In one study, which I found particularly interesting, electrical impulses were sent through the study participants' brains' to the parts of the brain associated with different emotions. When the participants experienced the triggered emotions, they were asked "why" they felt what they felt. Instead of answering "I don't know," each and every participant came up with an answer related to their personal life as to why they felt sad, angry, euphoric, etc.

I thought that was really interesting... and I also thought it would be pretty fun to have such an emotion-altering-electrode-contraption thing at my disposal... but I digress...

That study came to mind when I asked Iraq why she was having a mega-meltdown at the store and she quickly answered that it was because the new beach cover-up I had just purchased was hideous and she hated it. 

It's not that bad, is it?

Oh well... whatever - right? At any rate it finally got (almost) warm enough to venture back out to the beach on our last full day there - which was actually supposed to be our second-to-last-full-day there, but in light of the number of meltdowns we were dealing with on a daily basis, we decided that going home a day early wouldn't be a tragedy...

So this time we ALL put on bathing suits and went out to enjoy the sand, the waves and the goose-bumps one last time before traveling home.

Apparently the Teenage Handbook makes it clear that smiling for pictures is strictly prohibited for 17-year-old boys!

  In filling up her "pool" Iraq caught her first fish!

At the end of the day, Broadway took his magic carpet for a quick spin (wouldn't want him to fly it too long as he doesn't have his magic carpet flying license yet) and we all packed up and headed back to the camper.

On Saturday morning we packed up the camp site and headed home. Although Hubby and I will need a bit of R&R following such an exciting and eventful "vacation," at least the kids will be well rested! Yay.

Zzzzzzzzzzzzzzzzzzzzz...

Circle of Moms

 

*