Sunday, November 20, 2011

Wild Weekend - Parade and Virginia Safari Park

More on her later...

One thing about our Virginia town - we know how to have a family-friendly good time! This Saturday was the annual Thanksgiving Parade, and of course Broadway was right up near the front. He's the JrROTC 3rd Year Flight Commander this year... and his Mommy is very proud!

I love the second face from the left - LOL! "Dude! A tree!"

Because The Skink is still in "recovery" mode following her little bout with pneumonia, we took precautions and mummified her upon finding our parade rout spot:

She was nice and warm and loved every minute of the vikings,

the bagpipes (her favorite)

and, of course, the BIG GUY himself!

Don't you love parades where Santa gets to ride on a big, shiny firetruck?

Virginia Safari Park:

On Sunday Daddy had a little surprise for the family! I gotta tell you - I'm really impressed. he planned this all out himself and kept it a secret from the kids - right up until the first head popped in the car window!

You should have seen The Skink's face when she found herself nose-to-nose with an African Eland!

Iraq had a minor freak-out at first when a hungry llama tried to down her entire bucket of Purina exotic-critter-chow. We found the llamas to be very aggressive exotic-critter-chow hunters. We wanted to make the food last throughout the park so we closed the windows after giving the first group a small snack. They would trot beside the car giving us dirty looks for not having our windows open... and we all laughed hysterically at them... so they covered our windows with llama saliva.

I require critter-chow. Please to open your window!
"I'll show YOU 'Thanksgiving'!"

I love the look on this little guy's face. All the bigger critters were chasing him off, but my hubby drove up and made sure he got a special treat. He looks like Santa just showed up!

And this next shot - I had the perfect picture all planned out... the little guy lying down all pretty. Got it all centered, and...  
"Oh Hai!"

"Mooo" *with a Scottish brogue*

 Don't piss this guy off!
Or he'll rip the entire bucket of food right out of your husband's hands and take it with him... and leave some drool behind just to make his point clear!

Virginia - where the deer and the antelope play. Who knew?
What you gon' do with all that junk?
All that junk inside your trunk?
My hump, my hump, my hump, my hump, my hump,
My lovely lady lumps

 Nice socks! I knew anklets were coming back this season!

Ok guys and girls. That's great! Thanks for helping me with my "Fall" themed photo!

Broadway - making a new friend.

XL LOLCat says, "Hey! Ya think you might be able to bring one of those antelope over this way?"

I think this one won the race. He looks all out-of-breath to me.

Can you see the baby monkey?

Ok - enough of the Baaaaaaaad jokes!

If you ever find yourself near Natural Bridge, Virginia, we highly recommend this place! This is the last weekend they are open before shutting the poor African zebras and antelope in some nice, heated barns for the winter, but they open back up in March. You can see more on Virginia Safari Park by clicking THIS link.

Hope you had a fun and exotic weekend too!


Friday, November 18, 2011

A New Prenatal Blood Test for Down Syndrome - Some Facts

Note: anything marked with ( * ) is a clickable link to a source of more information on that given subject.

Up until only recently, the only way to know for sure if a fetus had Down syndrome was to have a procedure called an *amniocentesis. During the procedure a needle is inserted into the uterus to extract a small sample of amniotic fluid. (And doesn't that sound like fun?) Now a company by the name of *Sequenom has introduced a new test called *MaterniT21 - a simple blood test using a small amount of blood from the expectant mother, that can determine with a 98.6% accuracy rate if her unborn child has Down syndrome. (Doesn't that illustration just make you want to scream, "Watch out little dude! There's a giant needle headed right at ya!")
Historically doctors suggested amniocentesis' only for older mothers (you know - those of us who have reached the ancient age of "over 35") or those considered at high risk of having a child with genetic issues. As a woman matures, her chance of having a child with Down syndrome increases. That's not to say that younger women can't have babies with Down syndrome - they absolutely can, but it is simply less likely. Most doctors did not see a point in adding unnecessary risk to a younger woman's pregnancy, and the amniocentesis does pose a small risk of miscarriage. 

The new *MaterniT21 test is a game changer. This non-invasive test which poses no more risk of a miscarriage than any other simple blood test can be quickly and easily done for any pregnant woman of any age. Health officials believe this will greatly increase the number of pregnant women who get testing for Down syndrome done. 

Now - This is neither a religious post nor is it commentary on current abortion laws, etc. This is simply a presentation of facts and a touch of personal experience. If a person is faced with a big decision, that decision should be based on facts... updated, current and statistically accurate facts. Facts that could both negatively or positively influence that decision.

In fact, a *press release issued by *Sequenom on October 17th, 2011 states, "We believe that the MaterniT21 LDT will provide physicians and their patients with critical new information to help them make better informed decisions about the patients' healthcare and pregnancies."   

It sounds good on paper, but let's not lose sight of one very important point. The only "critical new information" the test gives patients to "help them make better informed decisions" is whether or not their fetus has Down syndrome. Did you know that currently 92% of people who find out their fetus has Down syndrome choose to terminate the pregnancy? There are no statistics on how many of that 92% received updated and balanced information on what is is actually like to raise a child with Down syndrome... but if my own experience is any indication, it is likely very few of them did.

How much do you know about Down syndrome?

Seriously... how much? Have you spent time with people with Down syndrome or been close with their families, or have you gathered most of your "knowledge" about Down syndrome from how people with the condition are perceived among your friends or in the movies? Is your knowledge based upon a series of medical facts read to you from a list by a doctor, or on talking to people who currently work with, teach or are the family member of a person with DS?  I can guarantee that the information you gather from people who truly know somebody with Down syndrome will be very different than from most medical sources or (God forbid) high school friends or Hollywood.

One of the first things I was told by the doctor who informed me my week-old daughter has Down syndrome is that she may never learn to read. The truth of the matter is that 14% (or 1 in every 7) adult Americans are functionally illiterate. Most of those people do not fall into the "disabled" category, but simply never learned to read. For more information, see the *National Assessment of Adult Literacy website or *this article in Live Science.

I believe that some doctors lose sight of the influence their words have over their patients. While a doctor says "might," it can be all too easy for a patient to hear "will." To prove that when the doctor (in Texas) told me my daughter "might" not read, he actually meant there was a very, very, ridiculously small chance my daughter might not read, I present Exhibit A: a video of my daughter (with Down syndrome / Trisomy 21) reading at age 3 years, 2 months.

That same doctor? He also proceeded to read aloud the following list of  "might have" as found on the *National Institutes of Health Down syndrome page:

·                     Congenital heart disease (NOPE)
·                     Hearing problems (NOPE)
·                     Intestinal problems, such as blocked small bowel or esophagus (NOPE)
·                     Celiac disease (NOPE)
·                     Eye problems, such as cataracts (Nystagmus - Correctable!)
·                     Thyroid dysfunctions (NOPE)
·                     Skeletal problems (NOPE)
·                     Dementia—similar to Alzheimer’s (NOPE)

I found all of this information very frightening and very overwhelming! Who wouldn't? And where was the positive, balanced information? After talking to that doctor, I left with the feeling of hopelessness. It took my doing some research on my own and talking to parents of children and adults with Down syndrome to learn there was a whole different side to the story than what I heard from the doctor.

Balanced Information

When I had my first and second child, both of whom appeared completely normal at birth (and I do stress appeared), why didn't a doctor come in and read me the following list of "Mights?" 

·                     8.4 percent of children aged 3 to 17 have *ADHD.
·                     8 of every 1,000 children is born with a congenital heart defect.
·                     2 of every 100 girls between the ages of 15 and 17 will become pregnant and have a baby.
·                     On a *recent national survey, 16% of high school sophomores reported having 5+ alcoholic beverages in a row within the last 14 days.
·                     On a *recent national survey, 10% of 8th graders reported using illicit drugs in the last 30 days.
·                     10 percent of 18 - 24-year-olds do not have a high school diploma.
·                     Oh yeah - and 14% of Americans are functionally illiterate. 

Impact on Family

Many people initially worry about the effect that having a child with Down syndrome will have on themselves or their family. They worry about the "financial and emotional burden" of such a child.They worry about how "hard" it will be to raise a child with special needs. I was no different when I found out my youngest daughter's diagnosis.

 Now interestingly my middle child is in the autism spectrum, having an official diagnosis of Asperger's syndrome. Autism and Down syndrome are not related. *Read about what causes Down syndrome here. There is currently no prenatal test for autism, but I can tell you that my middle daughter with Asperger's has been far more of a challenge financially and emotionally for our family than our littlest who has Down syndrome. Don't believe me? Just read most of the other posts throughout my blog.

Here are some *recent statistics on Down syndrome that your doctor may or may not share with you:

• 99 percent of parent/guardians said they loved their child with Down syndrome
• 79 percent of parents felt their outlook on life was more positive because of their child
• 94 percent of siblings 12 and older expressed feelings of pride about their sibling 
• 88 percent of siblings 12 and older said they felt they were better people because of their sibling with Down syndrome

And of 284 people with Down syndrome who were interviewed (average age of 23):

• 99 percent said they were happy with their lives
• 97 percent liked who they are
• 96 percent liked how they look
• 86 percent indicated they could make friends easily
• And only 4 percent expressed sadness about their life. (What percentage of "typical" 23-year-olds would say that?)

I should also mention that while I don't have actual statistics and numbers on the following little tidbits,it is well known among the Down syndrome community that a high percentage of people with DS graduate high school, many have jobs and many live independently and even *get married as adults. In fact the film that took the honor of "Best Documentary Award" at the Tribeca Film Festival in 2011 was Monica & David - a documentary about a husband and wife... both of whom have Down syndrome.

One More Thing: 

The truth of the matter is that any kid can have problems, psychological, medical or otherwise. All children are a lot of work. All kids are expensive, and No child is "perfect." There are no guarantees that the child a person could have from pregnancy #2 will be a technically "better," easier, less expensive or a less challenging individual than a child with Down syndrome. Every child has challenges, every challenge is different.

Is every person who has a child with DS going to tell you that it's the best experience ever? Think about it - everybody knows somebody who complains incessantly about their "normal" child. They would complain if that kid goes to Harvard at age 11 and finds a cure to cancer at 13. Much of life is dictated by your own concept of it - how you see it, how you take on challenges and if you can adjust to things that are new and different. 
As for me? I wouldn't change my kid's "designer genes" for all the money in the world. My kid is smart, creative, sassy, loves the show Victorious and knows her way around an iPhone better than most adults. On top of that, she loves trying new things and she shares her amazing sense of humor with our whole family. How could I possibly do "better?"

Resource Links:

Amazing People With Down Syndrome:
Eagle Scout w/ DS 

Educational Programs/Toys for Children With Down Syndrome:
The Institute for the Achievement of Human Potential 


Tuesday, November 15, 2011

So - Your Child Sleeps in a DOG KENNEL??

The Skink is doing well, all things considered. Following her stay in the Pediatric Intensive Care Unit for viral pneumonia, we are jumping through a few little hoops to help her continue to recover at home. When she sleeps she must stay on oxygen as well as a meter that tracks her pulse and O2 saturations. She gets breathing treatments 3 times a day and we take her to her regular pediatrician every few days.

In my last homecoming post, I mentioned that we have her sleeping in a dog kennel. We get that this makes us sound like awful parents. How's it working? GREAT! She loves it and at bed time begs to go to her "PeaPod" - the name of the pop-up tent marketed for children. Our actual PeaPod grew very old and decrepit and therefore was replaced with a nearly identical pop-up tent marketed for dogs... for less than half the price.

While one might easily assume that connecting a 5-year-old to wires and tubes right at bed time may not be exactly conducive to sleep, The Skink has proven once again that she is ready for new challenges as always.

Can you see the addition to our sleeping arrangements? Mommy lucked out on her daily trip to the pharmacy and found a cow PillowPet! It's the smaller size one (they were out of big cow PillowPets), but it fits perfectly in our PeaPod - - and needless to say, our cow-loving Skink LOVES her new pillow!

First we put on the sensor for the pulse/O2 meter. The Skink's biggest complaint? "It tickles, Daddy!"

All set! So now we cover it up with a sock and run the cord up her pants leg to keep it from tangling up in all the cows.

Then we hook up the oxygen...

and the pulse/O2 meter. (Note how patiently my little Skink is standing! She knows the drill.)

Then she climbs in while Daddy keeps her "tails" from tangling.

Then The Skink gathers her herd of cows,

Daddy helps her with her covers, and zips her up for the night.

See how neatly the tube and cord run between the two zippers at floor level? Can I just say, our Boots & Barkley Large Pop Open Dog Kennel ROCKS! (Anything highlighted in that funky peach color is a link :o)

I can not tell you how thankful we are that we are having to do this with The Skink and not Iraq! There is no way in the world (or in the rest of the universe) that Iraq would tolerate sticky things, tubes, wires or things that randomly "beep" in the night!

It's a blessing that The Skink is so tolerant - currently her oxygen sats still drop when she is asleep, and her heart rate regularly drops under 50 beats per minute... and that means that Mommy has to get up every 30 minutes or so and check the O2 or pat The Skink on the back to raise her heart rate to a rate more conducive to life. Poor Skink!

Hopefully she'll be all better really soon!

So - my mother was rather appalled that I would A) purchase a dog kennel for my daughter and B) tell people that I had committed such a crime (she didn't use those words, though - LOL). So what do you think?

Also - I almost drove my poor husband nuts tonight as I used my camera to document each step of The Skink's going-to-bed process. Was it worth it, or should I lay off the camera a bit and save my husband's sanity?

I'd love to hear your thoughts!


Thursday, November 10, 2011

Cows Are Flying, Doctors Are Dancing and We're Outta Here!

So after 9 days in the Pediatric Intensive Care Unit which was filled with flying cows and dancing doctors, The Skink is finally back at home... complete with monitors and oxygen. But let me back up a little...

Somewhere around Saturday, The Skink's personality began to slowly reemerge for ever-growing periods of time. While mom and dad continued to add to their sleep deficits, The Skink logged plenty of sleep hours... I mean like practically unconscious... as her body fought the virus in her lungs.

Not to worry! In those short times she was awake, she was devising ways of keeping the doctors, nurses and med students entertained and laughing. Some teachers from her school sent an adorable "Get Well" bear balloon to her. To prevent the balloon from wandering off or entangling itself in the maze of tubes, wires and leads, somebody clipped it to one of the cow's tails. And thus began the game of "Flying Cow, Bouncing Balloon." The Skink quickly learned that if she threw the cow at her favorite med student, the balloon would follow along. If she got lucky, the cow would hit the floor and the med student would get bopped by the balloon.

 Fly my pretty!

While generally one doesn't think of gales of laughter in relation to a hospital ICU, The Skink apparently never got that memo. She was laughing, the med student was laughing, the doctors were laughing, the nurses were laughing, other miscellaneous unrelated parties were laughing... Good times!

In fact The Skink used her time in the PICU to make friends and further prove that designer genes rule. Unfortunately after days and days in bed, when it was time to get up and start moooving... (oops - an impromptu cow joke escaped) she was very unsteady on her feet. On Monday she willingly walked the first time since being hospitalized, clutching daddy's hand... but when we let go and encouraged her to kick a ball in the play room, she lost her balance and fell, hitting her head on a (padded) bench. Of course then she proceeded to become furious with the floor for tipping up when she wasn't expecting it, and at the bench for bonking her noggin. After learning to distrust hospital floors, she wouldn't walk at all! The next day we tried without success to get her up and moving again... It became the mission of all her new friends! And all those doctors and nurses? This is what they did to get The Skink on her feet:

How amazing are these people?

After all that excitement, we could tell The Skink was exhausted. She has lost so much weight and just looked so small and frail, so I scooped her up, plopped her back in bed and threw cows at her to make her giggle again.

By Wednesday The Skink's hair had reached disaster status. All those crazy wires and tubes, not to mention all the sleeping had given her hair the appearance of a giant nest!

Angry Bird likes nesting in messy hairs!

A kind nurse took pity on the poor Angry Bird Skink and washed her nest hair, braided it and found some adorable flower elastics to compliment The Skink's pink hand-me-down jammies!

Please don't look so thrilled, clean Skink!

And finally, today (Thursday) - a full 9 days after our trip to the Emergency Room, the wonderful people of the PICU allowed us to take their Skink away from them. But not without some lovely parting gifts!


Among our booty are an oximeter which tracks her oxygen saturation while she sleeps. Unfortunately the pneumonia has been serious enough (not like pneumonia is generally jovial... ) that The Skink's oxygen saturation still drops dangerously low while she's sleeping. The oximeter will ruthlessly awaken us throughout the night ('cause who needs sleep anyway?) to alert us if The Skink's sats are too low.

And to help keep those sats up...

"Mom... it's bigger 'n I am. Srsly??"
We have this lovely piece of decorative machinery. No seriously - it looks GREAT in our house, and its perfect for stubbing toes on if one gets up in the midst of the night to pee. It also creates a lovely white noise to lull us to sleep... kinda like listening to a jack-hammer.

We also have a nebulizer to provide us with a fun and challenging experience no less than 3 times a day. But it doesn't stop there, folks! If you call now you'll also receive about 2,871 feet of airline tubing to run from all your new and fun pieces of equipment to your Skink! All of this for one low payment of...

 OK - thanks Willie! I'll take it from here...

Of course with all the bells and whistles The Skink has to wear while she sleeps, it has become quite necessary for us to prevent her from getting out of bed and running around the house. That doesn't generally work too well if you have a oximeter attached to one toe and a giant jack-hammer oxygen machine attached to your face by a fraction of that 2,871 feet of tubing.

Unfortunately The Skink doesn't usually stay in her bed and is quite adept at climbing out of cribs. We also need her in our room so we can mess with the jack-hammer if her sats drop too low.

A number of years ago we invested in a PeaPod Travel Bed which is like a mini pop-up tent that you zip your kiddo into when you are away from home. That would have worked great for our needs, except that ours is a few years old... it has holes big enough for The Skink to crawl right out of (as we learned the hard way on our last camping trip). We're a bit short on funds right now, so dropping another $83.95 on a way to confine The Skink was going to be a bit too much... Luckily Brandy had a great idea!

I made a quick run to Target and got a Boots & Barkley Large Pop Up Dog Kennel. It actually has MORE room than the PeaPod did, and the fitted dog bed I got for it is way more comfortable than the mini air mattress that comes with the PeaPod. We set it up at the end of our bed, put clean sheets in it and The Skink's comforter and cows. The oxygen tubing and the oximeter cord come right out between the two zippers which meet at the bottom of the kennel bed. 

Now don't get me wrong! I do not condone the use of a dog kennel for confining children. This is just a creative, cheap, temporary solution to keep The Skink in one place for her own health and safety while she finishes her bout with kennel cough pneumonia. It is very important that we are able to keep the monitor and the oxygen on her when she sleeps. As I write this, she is sleeping very comfortably with the oxygen pumped up to 5! Yes - her sats are dropping too low at any rate lower than 5 right now.                           

    ...and besides - honestly, what is the difference between an over-priced pop-up tent marketed for children and a similar (yet more roomy) pop-up contraption made out of identical material and marketed for dogs? I'll tell you what! The price! And maybe the label, but whatever, right?

And with that, I leave you with "random tree picture." I shot this out the car window as I sat in the pharmacy drive-through waiting to pay for a giant bag of medications.