Thursday, May 10, 2012

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!


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Friday, May 4, 2012

One of Those Amazing Days

Yesterday was one of those amazing days.

One of the best things about life is that you just never know when one of these fun, amazing days will just pop up! You can't necessarily plan them and you can't make them happen. They just happen on their own, which only adds to the sheer amazingness of it all.

Yesterday started out like any other day. Got the kids off to school, took care of a few odds and ends around the house, took The Skink to the doctor for her eye surgery pre-op check up. Isn't it funny how some of us special needs moms just throw stuff like "pre-op check up" around like it's a normal daily activity? While it is by no means a daily activity, it ain't our first rodeo, either. The Skink is getting some adjustments made to the position of her left eye next week. In comparison to the major eye surgery she had when she was two, this is small stuff.

But anyway, back to the Amazing Day thing...

My friend V has a small farm where she raises chickens, ducks and her two daughters. A while back she invited us over so my girls could see her chicks and ducklings and meet her girls, so when The Skink and Iraq got home yesterday, off we went.

Upon meeting, the girls all became instant friends. The four of them went off and played happily until it was time to go out and see the birds. The Skink was quite content to admire the chickens and ducks from a small distance, but Iraq was ready to get some good chicken cuddles!



The girls had a great time helping to collect fresh eggs from the hen house. Apparently The Skink didn't feel right about taking the eggs away from the chickens. She tried to put one egg back in, but it was too far to reach... so she just dropped it in. (Ooops) We took the surviving eggs back up to the house where snacks were waiting for us.

Then the girls were off again, this time barefoot and with slices of delicious, sweet watermelon in hand. There's just something about being in the country that seems to set a child's spirit free. Iraq has come a long way with her social issues and anxiety, but yesterday - out in that wonderful country setting - she was just another little girl. As V and I sat talking, we could hear the happy voices and giggles of the girls as they played together. Just four little girls having fun and enjoying being little girls.

All too soon, V's younger daughter had to get ready for her weekly riding lesson. The news was met with groans and disappointment. Yeah - they were having that much fun! So on a whim we decided we would all go to the barn to see the horses.


While L2 was having her lesson, the other three girls wasted no time getting as loud and giggly as they possibly could.


In fact when it came to having fun, they did such a great job that we were asked to take them a bit further away... where they wouldn't be such a distraction to the horses!

Lucky for us, a country girl's dream was waiting in the next meadow!


Yup! A real rope swing hanging over the most picturesque babbling brook in all of Virginia!


And just up the hill, there was a horse swing cut from an old tire and hanging from a shady Oak tree!
If this isn't heaven, then I sure hope heaven has a carbon copy of this place!








This may be one of my all-time best shots! I get a big, goofy grin from ear to ear when I look at it:



Every girl should experience the joy of running barefoot through the grass, swinging from a rope on a tree, splashing through a cool mountain brook and just... being a girl! I just wanted to bottle the day. (Lucky for me, camera's are a little like day-bottling devices!)









These are the kind of amazing days I wish would never end. As the sun started setting over the Blue Ridge mountains, the girls let the cool stream rinse the mud from between their toes. Shoes were gathered and put on damp feet and we headed back to the car.

This morning, after asking (again) when we can see L1 and L2, Iraq got ready for school, helped The Skink on to her bus and came back in the house to spend a few minutes with me. We cuddled up on the couch and talked about the fun she had with her new buddies. We talked about how great it is to have friends. Iraq has a good friend at school this year. It's really the first time she's been able to maintain a peer relationship like this. The kid is blossoming - I tell you!

Before leaving for the bus, Iraq went up to her room and came down with one of her treasured lip glosses. These are some of the top items she is known to hoard and steal due to her Asperger's syndrome.
"Are you taking that lip gloss to school today?" I asked.
"Yeah. I'm going to give this one to R, because she's my friend!"

It's pretty cool when an amazing day lasts all the way through to the next morning!

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Do you have some special memories from your own childhood? What are some experiences you think every kid should have? I'm looking forward to reading your responses!


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Monday, April 23, 2012

National Infertility Awareness Week - My Story


This year National Infertility Awareness Week runs from April 22 through April 28. Click HERE for more information.


The following is an excerpt from Disaster FlambĂ©  and my own account of dealing with infertility. It took 2+ years to conceive Broadway, and Iraq came after an even longer "dry spell." The Skink was an amazing little surprise, like punctuation at the end of my baby-making career.

 

An “F” In Conception

 

I’ve never understood the whole “Birds and Bees” thing. Perhaps I missed a story somewhere about some strange intra-species love affair, but if not, I fail to see the comparison of a bird or bee to anything having to do with human conception.

To my understanding, first a bird finds a partner, makes a nest, has a little fun and lays some eggs. After sitting on the eggs for a few weeks, mom and dad bird spend their time flying about looking for food. In a few months it’s time to fly south, and they all part ways to go on vacation. The following year, mom bird finds a nice new bird partner and the process starts over.

Bees on the other hand are a completely different story. There is but one queen. The queen does nothing but lies in the hive and pops out thousands of eggs. She has a husband or two, but all the rest of the bees are drones. For those who are not heavily into insect social structures, drones are mundane little workers with no other purpose than feeding and maintaining the hive. If you are born (or hatched) as a bee, there is very little chance you will have the luck to be a queen or one of her trysting partners. You will probably be a boring little drone, running about with pollen on your feet gossiping about the bees down in Honey Production not keeping up with demand.

Humans are different. Not to say some of them don’t find a new mate every year like birds, but it’s not the generally approved method for creating a family. And of course like the bee, some people are so focused on work they forget to have a family. But other than a few freak similarities, our mating habits are completely different.

Through our younger years we do what we can to prevent a family. We won’t even hug our own parents in public… we wouldn’t want anyone to think we actually liked those people! Then as young adults, we court, but try not to conceive or marry. If we are intelligent young adults, we utilize good birth control methods and leave nothing to chance. We eventually find the person we hope will be Mr. or Mrs. Right, settle down and wait until everything is perfect before conceiving.

Once we realize that nothing is ever perfect enough to have a child and that our biological clocks are ticking so loudly they’re keeping us up at night, we decide to stop preventing a family. For those that did not conceive by accident prior to this time, most will conceive within a few months of “not preventing.”

And then there are the rest of us - a small group who, after not preventing for a year or so, actually start trying. And trying. And trying. And when that doesn’t work, we seek medical attention. And thus begins the baby obsession.

The hardest part about belonging to the group of those “trying to conceive” or TTC, is that while we’ve finally made up our minds that we want a baby (bad!), all our friends seem to just pop them out like toast. In fact it frequently happens that a fertility-challenged woman will be surrounded by co-workers who get pregnant by accident, and complain about it incessantly. Fertility challenged women just love hearing about how pissed off a co-worker is about not being able to sit in the hot tub at a friend’s party last week! Love it.

Eventually we start to see the irony in the fact that we were so careful in preventing a family for so long before we were “ready.” We did the right thing, right? We were the smart ones, right? Oh, what we wouldn’t give to have the “luck” of those unsuspecting high-school girls who, whoops, get pregnant seemingly from just looking at someone of the opposite sex. How do they make it seem so easy? It is simply not fair!

And why does it always seem to be that the people who want babies the least seem to have the most? We have to watch the news with stories of little Joey and his 23 brothers and sisters being put in foster care when it is found that their 34-year-old mother has gone on vacation without them… for a year.

Perhaps from these experiences we become better parent material. We spend years wanting what we can’t seem to produce for ourselves, and dreaming about what we’d do if we had just one baby. When we’re lucky enough to have our own or adopt one, no-one in the world could make us treat that bundle of hopes and dreams in a less than wonderful way – ever! Our children will always know how much we wanted them and needed them.

Then, after experiencing the sheer joy of parenthood, we simply must have another. And the whole process starts over again. It doesn’t matter what they look like. It doesn’t matter if their skin is the same color or their eyes the same shape. What matters is that incredible bond between parent and child – that pure and overwhelming love that comes over us like an ocean wave.

I admit it. I value the lessons I’ve learned through the years I yearned to be a parent. Perhaps I don’t react so harshly when little shoes show up caked in mud. Perhaps I’ve made less silly rules than I would have had this gift from God come easily to me. In my house, “Don’t touch!” was replaced with “Let’s hold that together so you can see it better.” “No!” was replaced with “I’m worried you might get hurt if you do that. I want you safe because you are so important to me. Mommy would cry if you got hurt.”

I don’t know how birds handle infertility. Do they count their eggs before they’ve hatched? I don’t know if queen bees long for just one more larvae in the hive. Either way, we as humans are cursed with the knowledge of and longing for what we don’t have, and sometimes without the understanding of how much we’ve already got.

Such was the case for my husband and me. It had been almost two years since we had “stopped preventing.” It had been at least a year and a half since we started making charts, graphs and taking temperatures... sexy! On a number of occasions my husband had left work early, telling his commanding officer that his wife might be about to get pregnant, and he wanted to be there when it happened.

I had read all the books and knew enough to realize that I was somehow not quite “normal.” Instead of the neat little twenty-eight day cycle women were supposed to have, mine seemed to be all over the chart. Sometimes it was as short as thirty-four days and sometimes as long as fifty-six days. I knew I was supposed to ovulate fourteen days prior to having my period, but as these were the days before ovulation detection kits, I had no earthly clue when that might be on any given month.

As the months came and went, I almost always felt sure that “this was the month.” My breasts felt sore, I felt grumpy and tired and my period was late. After two years I finally had to understand that those symptoms were just the normal PMS symptoms I got, every stinking month! Like taking a bite of food in a restaurant will signal the wait staff to come ask you a question, for me taking a pregnancy test always brought on “Aunt Flo.”

In August of 1994 I was feeling particularly bad. I was considering getting my hopes up, but then made that regularly depressing discovery in the restroom. Of course I did what any other warm-blooded depressed, monetarily challenged woman would do. I went shopping. How else could I keep my mind off my failure? On the way home I stopped and picked up a home pregnancy test out of habit.

I realize that sounds totally and completely idiotic. It was, yet it was also a compulsion at this point in my TTC career. I cried as I took the test, just knowing I was about to get another “F” in conception. As with every other month, I immediately tossed the soggy stick into the garbage and then grabbed it out again and sat staring at it while the wetness slowly soaked it’s way up the material inside the plastic. I closed my eyes, prayed, cried and lost all hope. I opened my eyes and witnessed the most beautiful sight I had ever seen.

There were two perfectly clear lines created by my very own pee-pee on the test stick. Two of them! I cried even harder, prayed even harder and had two years of hope overcome my entire existence in that moment.

Throughout the rest of the day I planned how I would spring the big news to my husband for this was going to be one of the most important days of our lives. I didn’t have a pretty watch box and a gift would only raise his suspicions when I wasn’t supposed to be spending any money. I’d just have to hold it behind my back.

As he entered the house, I held both my hands behind my back and begged him to “pick a hand!”
“I’ve had a long day and I’m not up for games right now!” he said, pushing past me.
I positioned myself in front of him again and asked as sweetly as I could, “Please just pick a hand. Any hand!”
“You don’t even have dinner on yet?” he snapped at me. “I am hungry and tired and I am not up for games!”

I was so used to accepting this kind of treatment that it bounced right over my happy little head. I brought my arm around to my front and proffered the stick to him.
“What the hell is this?” he grumbled, taking the stick from my hand and then in horror he asked “Did you PEE on this?”
“I sure did!” I exclaimed proudly.
The slow realization of what he was holding finally worked its way up to the stony expression on his face.
“Oh my God! Oh my God!” he stammered.
I then received one of the nicest and happiest hugs from him in the history of our marriage.

Later on that evening on our way back from a dull army function, my husband stopped in at the local pharmacy.
“What are we doing here?” I wondered aloud.
“I’m getting two more tests to make sure you didn’t mess the first one up and get my hopes up for no reason.” He said as he closed the car door.
Both of those tests showed positive results too, much to his consternation and my glee.

Though all the tests showed I was pregnant, as I mentioned before, I had also gotten my period. The bleeding came and went, as did my concern over the tiny life nestled deep inside of me. The doctors were a bit befuddled and told me simply not to get my hopes up. Like hell! After over two years of wanting a child with all my heart, I wasn’t losing this one! I truly believed that nothing in the world could have brought me down from my wondrous cloud.

 







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Saturday, April 21, 2012

Moo Cow, Moo Cow, Cows! Cows! Cows!

Hey look! It's Emergency Cow!

 

So anybody familiar with my youngest, "The Skink," knows that she is a cow fanatic! The Easter Bunny brings most kids toy bunnies or chicks. He brings The Skink toy cows!


We have a herd of no fewer than 15 cows that reside in her room... many have the honor of lounging in her bed all day. She has her "school cow" and her "home cows." Cows go on trips with us and...

Do you remember this?


Our poor little Skink ended up in the hospital Pediatric ICU with viral pneumonia for over a week in November... and then again (in the regular pediatric ward) in January... and the cows were there to help us all through it.

During the initial November visit, we met the most wonderful ICU pediatrician who we will call "Dr. Cow." Having been raised on a dairy farm, Dr. Cow took a shine to The Skink, and The Skink to her! In fact, Dr. Cow has a young daughter who is a cow fanatic also - so when we ran into Dr. Cow and her small herd of daughters in the WalMart a few weeks ago, she told us about a Dairy Cow Show at Virginia Tech this weekend.


We may have been at a dairy farm in the VA Tech agricultural complex, but as far as The Skink was concerned, we were at some sort of bovid Disney World!


She was thrilled beyond words to see (and smell) real cows up close. They are so much less odoriferous in pictures! I was enjoying watching The Skink's enjoyment... but I was also turning a little green with the smell. I can handle horse smells. Cows do NOT smell like horses!



But The Skink didn't want to leave. At least not until she had personally said "Hi, cow!" to each and every cow there.




The Skink was negotiating with me to take this one home.

We finally dragged her away from all her new friends and headed home. We had a long conversation about our adventure which went a little like this:

Me: "Did you have fun?"
Skink: "YES!"
Me: "What did you see?"
Skink: "Cows! Black. White. Moo!"
Me: "Did you like seeing the cows?"
Skink: "Yes!"
Me: "Did the cows smell bad?"
Skink: "NO! Cows NOT smell bad! Cows good! Good cows!"

Apparently I really made her mad asking if the cows smelled bad! How dare I say such things about cows? What kind of mommy would suggest your favorite animal is stinky?

She has forgiven me now, and I can hear her and her big sister giggling over the monitor. My girls decided to have their first "Sleep Over" tonight.


The cows were invited!


Circle of Moms

 
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