Wednesday, March 30, 2011

If Your Heart Hasn't Broken for This Boy Yet...

Perhaps you've already heard the story of Kirill...

...it's the story of a family who raised thousands of dollars and crossed an ocean to tell a little boy locked away in a big building that he was worthy of time in the sun.

It's the story of a boy waiting for years to feel the arms of a momma around him and melting into a new warm happy when they finally arrived.

Take a minute and watch the miracle yourself...




It's the story of a family that raised thousands of dollars and crossed an ocean and scooped up an angel and asked to take him home.

It's the story of a family who heard the word NO.

It's the story of a judge who said NO because Kirill had Down syndrome and, therefore,  did not deserve his time in the sun.

You can read his whole story here...

Checkbooks can't solve this one.

No fundraisers are applicable here.

In order for Kirill to come home with the family that has taken on the world to hold him in their arms, the judicial decision-makers in Kirill's country must have a dramatic change of heart.

I only know one department to go to with that request.

Please pray for Kirill today...for his safe-keeping and compassionate care as decisions are made on his behalf.

Please pray for the heart of the judge who said NO because Kirill is NOT the only child with Down syndrome being adopted out of the district she resides over.

Pray for continued courage in hearts that are breaking.

Pray for hearts to be employed in making decisions where reason has only been called upon before.

Pray for a break in the dark and for whispers of mercy to illuminate the clear place Kirill holds in the family that has found him.

Please pray for sun.

Semi-Wordless Wednesday: Jace & Dusty

LC's never had a security object.  No need for invincible superheroes to have a security blanket.

Jace previously hasn't had one, either.  I assumed it would be a blanket that he eventually showed particular preference for, since he insists on sleeping with soft fleece upon his face.

Jace did eventually stumble upon a loyal buddy...but it wasn't a blanket.

Meet Dusty...

You'll probably be seeing more of him in the future.

They've become quite inseperable.

With each new day, we welcome something freshly weird.

Edited to add that Justin would like me to establish that the duster Jace is making out with is a CLEAN dusting tool that has NEVER been used.  (I think all the dusty surfaces around the squibs in each of the photos on this blog establish this without additional explanation.)  I would have added his "we practice hygienic living practices" clarifier earlier, but I was cleaning a bathroom and drying squibs after they'd soaked themselves to the bone playing in water from the toilet bowl.

Tuesday, March 29, 2011

Tuesday Thoughts...

I'm really not sure why I've been so hellbent on both of my children learning to say "momma" or "daddy".  There's really NO question when my children want Justin's or my attention and they have a variety of ways of obtaining it without ever verbalizing our names.

What I SHOULD have spent the past 2 and 1/2 years working on was teaching them to clearly say an easily pronounceable word that means, "My bowels are about to explode simultaneously from a number of orifices".  I don't know what that word would be...but it would probably be appropriate if the word was four letters long.

If I had taken the time to instill the word in my children's spoken vocabulary, they would be able to deliver it at opportune times.  Such as, ten minutes BEFORE I had buckled them into the car and headed across town for six therapy sessions.

There are probably a few sounds that you don't want to hear errupting from the back of a car that is jammed full of rear-facing carseats.

I certainly experienced a memorable one today.

On a related note...Pudge seems to have a stomach bug.  And, it turns out, a day scrambling from one therapy session to another is not the worst way to spend a Tuesday afternoon.

Oh, no.  There are alternatives far more unpleasant that can only be experienced via a toddler's digestive system. 

Fruit snacks and oatmeal will never look the same to me again.

Monday, March 28, 2011

Dispelling Myths...

Kids with Down syndrome are always happy.


Someone clearly missed the memo...

This is a performance Jace treats us to at least ten times a day. Now that he's teething, I'm sure the number has doubled. I'd love for those statistics to be an exaggeration.

They aren't.

This is his response when he's walking and falls down...when he's walking and LC pushes him down...when he finishes a bottle and realizes there's no more to munch...when we set him down and he'd prefer we continue to lug his TWENTY FIVE POUNDS around as young princes are entitled to be carried...


And mealtimes?  This is every meal, folks.  The boy HATES to eat...



Made you want to go kiss your own kid straight on the mouth, didn't it?

Don't fight the impulse.  We understand.

The Biggs is high drama. 

We're still hoping it's a phase, but it looks like a personality trait to me...

Good thing he's cute.

*Modified to add that Jace is wearing a piece of fabric under his arms that wraps around the back of the high chair.  Jace has a wicked case of gravitational insecurity and does "better" with feeding if he doesn't have to constantly stabilize himself.  The seat's shoulder straps send him into a rage, so the fabric hugs him to the back of the seat in a friendlier fashion.   

Sunday, March 27, 2011

A Sweet Reminder...

I've been holding my breath for days.

I have been trying, for weeks, to find a dance class for LC to participate in.

I found a promising program, but the Mommy & Me classes for children aged 18 months-3 years were all scheduled during LC's therapy sessions.

(When you have 13 sessions a week, it's hard to squeeze anything else in.)

I spoke to one of the directors of the program and she was willing to allow LC to visit their Sunday class.  The class is for 3-7 year olds, but she said LC could come to a class to see if it would be something she could participate in. 

I've been a nervous wreck. 

I know LC loves music.  I know LC loves dancing.

But, I also know that LC's not a gold star-wearer in the Following Directions department. 

I bombarded my brain with positive self-talk to brace for the disappointment if things didn't go well.

"She's 2 1/2...it's an older group...it's always good to try new things...she can try again later...it's exciting just to get the chance to spend time dancing with other kids...even if it's just for one afternoon..."

I mentally rehearsed how I would sneak out the back of the studio if our dance class attempt was a bust. 

I practiced the, "Thanks for giving us a chance to join your group.  I'm sorry we're not ready yet, but we'll be in touch" speech.

At 1:00 today, I placed LC in a line of teeny ballerinas and kept my car keys in my hand, so our early exit could be smooth and swift.

And, at 1:00 today, LC reminded me of all I forgot to believe in...

...that she is able...


...that children are kind...


...that she will make a place for herself in any group she's allowed to join...

...and nothing is more lovely than hearts brave enough to dance to their own music.
 

Bravo, Pudge. 

Bravo.

Friday, March 25, 2011

Halfway Through Another Year

Next week looks busy.

And, I always like to post a little bit of happy on Friday when I can.

So, here's to Biggs hitting the mile and a half marker next week.

We love your nutty little brains out, Biggie. 


Thursday, March 24, 2011

Heaven Help Us

It looks like we have another member of the Vertical Movers Club.

Disclaimer:  I'm pretty sure this is only interesting if you're a big fan of watching kids walk around in their underpants.  If not, probably NOT riveting viewing.  But, the grandmothers must be kept visually updated.  And so...


Toddler Teeth, continued...

In my last tooth-focused blog entry, I listed some of the dental considerations that may need to be made for children with Down syndrome.

One thing I didn't know at the time was a piece of good news.  Children with Down syndrome experience only 1/3 the number of cavities as their typical siblings.  This may be due to a variety of factors...later appearance of actual teeth...more space between teeth (less room for plaque to grow...)...whatever the reason, it's nice to have a bit of positive to cling to.

But that piece of positive DID have me questioning why children with Down syndrome were more prone to other dental problems...specifically periodontal disease. 

Through research and picking the brains of pediatric dentists, one response seemed to be the common culprit.

Children with Down syndrome often have more significant dental problems because, as dental patients, they are categorized as among the most difficult to professionally treat.

Simply put, it isn't easy to clean or repair the teeth of a kiddo with Down syndrome.  While typical children may share the same fears and anxiety that children with Down syndrome experience, it is far more difficult to discuss and alleviate these fears with a child who has Down syndrome.

While that reasoning may sound a bit stereotypical, I must admit I don't know of anyone who has won a debate with a person who has Down syndrome.  I have worked extensively with children and young adults with Down syndrome and have yet to score any personal wins.  If a child with Down syndrome decides that the dentist is dangerous and they're NOT getting dental work performed, it's a rare dentist who wins that battle.

So, here is the dental hygiene routine we've come up with for now...

1.  We brush twice a day using a consistent, predictable routine.
After breakfast and bedtime snack, when the squibs are in their feeding seats, we do brushing.  Flossing is also recommended, but right now we're focusing on the brushing experience being successful and positive before we introduce another element into that activity.

Each squib has their own, electric toothbrush.  Before brushing begins, we sign "brush teeth" and find our teeth and mouths.  Then, we put happy music on the CD player and play with our toothbrushes in off mode for a minute or two. 


Neither of the squibs are fans of their toothbrushes in "on" mode, due to the noise each one makes and the sensations they bring into their mouths.  However, dental tools are often both noisy and implement vibrating and spinning motions, so I think it will be to their benefit to grow comfortable with using the brushes when the brushes are turned on.

For now, we're easing into it by signing "GO!" and turning each brush on.  Then, I allow the squibs to explore the brushes with their arms...fingers...etc.  I place the brush on their cheeks and faces and let them place the brush against their tray and play with them in "on" mode for a bit.

(Biggs, of course, is a fan of the toothbrush tummy tickle...)

After a few minutes of play with our toothbrushes, it's time for the brushing to begin.

Teeth are brushed with the squibs at table height, laying on their backs.
This is done to simulate the dental visit experience as much as possible.  Luckily, our feeding seats will fully recline, so it's easy to tip each squib into "ready position" when it's their turn to brush.
It's okay to simply use a damp toothbrush, sans toothpaste until the child is up to 3.  Toothpaste with fluoride isn't recommended until age 3-4, anyway. 
We DO use toothpaste, simply because the squibs LIKE the flavor and it adds to the appeal of the brushing.  If you DO use it, keep in mind the swallowing strength of your child and the fact that they're on their back.  A minimal amount of paste will do.

We brush from behind our squibs.
Since that's the stance a dentist would normally take, we come at the squibs' teeth from the top of their head, so they're used to the experience of an adult approaching from that route.

Each squib has a brushing theme song, of course.
This has been the most positive addition to our routine.  We chose a song, approximately 1 minute long, for each of our squibs and play the SAME song each time we brush.  When the music starts, brushing starts.  When the music stops, brushing stops.  EVEN IF WE DIDN'T FEEL WE HAD SUCCESSFULLY REACHED ALL THE TEETH.  It's important that they understand the activity has a start and a stop.  By knowing the song, they can anticipate where we're at in the brushing process.  As we lengthen the brushing time, we'll simply choose longer, familiar songs to play as we brush.

If you'd like to employ the same strategy, I'd advise searching for television theme songs on iTunes.  LC brushes to the Mickey Mouse Clubhouse theme (0:57) and Jace brushes to the Backyardigans theme song (0:58).  The Raffi song "Brush Your Teeth" is a great one and is 1:16.  You can also go to your iTunes library, if you have one, and sort your songs by length.  Then, you can compile a playlist of songs that last for approximately 1 minute.  It will be a great go-to album for LOTS of your routines...picking up toys, loading a diaper bag, dancing before bed, etc. 
  After we're done brushing, we celebrate ourselves and then immediately head into a fun activity...usually going to the playroom or dancing to the Biebs. 

So far, our dental routine is proving successful and positive, but if you have additional tips and tricks, we'd love to hear them!

Wednesday, March 23, 2011

It Can't Wait Until Easter.

I want to speak to the person in charge of colors/bag distribution at M&M's.

Someone's slacking on the job, and I want some accountability.

Those of us with near-neurotic color obsessions guiding our consumption of junk food know you're going WAY heavy on the browns and oranges, Mysterious M&M Supervisor.

And reds?

I had THREE in the last bag of plains.  THREE.  And it ain't the first time.

I'm on to you, Mystery Supervisor. 

On.  To.  YOU.

Wordless Wednesday: Pretty Little Pudge

Tuesday, March 22, 2011

The Torture that is the Lenten Season...

For Lent, I gave up Facebook.  In the name of our risen Lord, I decided to stop devoting hours of time to reading that 150 of my closest friends were bummed that it was Monday and thankful when Friday arrived.

I thought it would be relatively attainable with limited personal sacrifice and allow me more squib time.

And I had no idea how mentally tortured the abandonment of Facebook would leave me.

For starters, of course, I'm sure I'm  missing pertinent details and photos of events occurring in the lives of people I adore.

But, mostly...I've realized that I was using Facebook to self-medicate for my mild schizophrenia.

And the Tourette's syndrome-like verbal blurts that popped into my brain continuously throughout the day could be spit out onto my Facebook page and no longer rattle in my brain.

My mind has become abuzz with useless commentary.

The random thoughts have nowhere to go and are bumping into pertinent information I need to keep in my brain and knocking it completely out.  I'm operating like a person with early onset dementia who can only converse in unrelated quips that sound like I'm reading my way through a parking lot of bumper stickers.

I don't know how much more of this I can take, quite frankly.

If I'm not on Facebook, I don't get to laugh daily over the posts by Josh Hopkins.

I have no one to glory with over Jace's squeaky Easter shoes that arrived in the mail.

I have nowhere to put my random brain utterances...here are the ones I've had in the past 3 hours alone...

a guy on dr. phil told his wife he wants to become a woman but he also wants to stay married. that would be a definite NO if i was in the same situation. just thought i'd put that out there.

i think vegan is a sad sounding word. especially when i hear it mentioned in the title of a brownie recipe.

i wonder if those self-feeding cat feeders are made with big enough openings for goldfish crackers.

i think justin keeps putting my metal cake pan in with my cookie sheets because he wants to see what my version of full blown crazy looks like. and he's come close enough to meeting that version in the past that i can't understand his curiosity.

where does the u in curious go when it becomes curiosity? or when generous becomes generosity? and when they were writing the english language, i'm pretty sure the 2nd grade teachers in charge of teaching phonics didn't get a vote.

I don't know how I'm going to get through this.

I'm starting to wonder what degree of sanity I'll be operating at when April 25th finally arrives.  There's a high possibility I'll be in the corner, drooling and weaving the baskets my squibs will utilize for egg collecting.

Forty days have never...felt...longer.

Monday, March 21, 2011

45 Seconds of Typical LC

This World...

As parents of children with Down syndrome, I always feel compelled to remind people that Down syndrome is NOT our world...it's just the most beautiful part of it.

The same could be said for anyone.

So, today, if you meet someone with Down syndrome...show them compassion.

And if you meet someone without Down syndrome...show them compassion, too.

We're all equal shareholders in this world we've got.

And any good that awaits this world depends on our ability to recognize just that.

Sunday, March 20, 2011

Too Much Tooth Information...

We've always known that a diagnosis of Trisomy 21 (Down syndrome) comes along with other associated health conditions.  Basically, somewhere there is an overwhelming list of "stuff that could be physically wrong with your kid if your kid has Down syndrome."

And you know what?

EVERY THING included on that list of "weird and potentially bad stuff that comes with Down syndrome" can also happen without Down syndrome being part of the equation.

Digestive issues?  Yup.  Those can show up in kids with Down syndrome...and I know plenty of kids with devastating digestive issues that have a typical number of chromosomes.

Congenital heart defects?  Absolutely.  And I also know lots of kids without Down syndrome who have scars on their chests.

I could go on and on...vision impairments...breathing difficulties...feeding issues...mobility struggles...learning delays...they can happen with Down syndrome.  They can happen without it.

So I don't like to dwell on the topic of "we're facing this issue because Pudge/Biggs has Down syndrome".  Because we can also say, "We're facing this issue because we're parents of a kid.  And kids throw curveballs all the time.  It's in their job description."

But, recently, the Biggs HAS forced me to do some Down syndrome-specific research when it comes to teeth.

Biggs' teeth are coming in MUCH slower than LC's did.
(Jace with his favorite teething tool.
LC digs licorice...Jace goes for organic carrots.
Washed...not peeled...and bring it cold or not at all.)

And they're coming in a bizarre order.  He started with his bottom two...like LC.  Then his  top two...like LC.  And then he started cutting molars.  WHAT?  And those molars REFUSED to break through after their sharpity corners had made their appearances.  Meanwhile, FIVE OTHER TEETH have attempted to peek through, but absolutely will not pop up out of those swollen pink gummies.

The kid is tortured.

And, I think I've mentioned the wimp factor that is considered where Jace is concerned.

I had read that children with Down syndrome often have delayed appearance of baby teeth...but, then again, LC's teeth popped through earlier than many of her typical peers.  So, I didn't give it much thought...until THIS tooth showed up.
1.  Yes, his eyes are that blue.

2.  Yes, there is something QUITE unusual with that tooth on the far right.  And, YES, it came in looking like that.

And so...with the threat of Biggie's mouth erupting in tiny shark teeth, I was forced to do a little more research on dental anomalies associated with children who also have Down syndrome. 

Here are some facts I learned about pediatric dentistry in patients with Down syndrome:

For patients with Down syndrome...

...the teeth can be missing, malformed, poorly calcified, or fused together.

...50% report missing permanent teeth that never appeared following the loss of baby teeth.

...35-55% report extra small teeth (microdontia)

...75% of cases reported delayed baby and/or permanent teeth eruption.  Baby teeth often did not completely erupt until ages four or five.  Permanent teeth did not erupt until after age nine.

...90% of patients with Down syndrome were diagnosed with periodontal disease between the ages of 6 and 15 years old.

In short...people with Down syndrome can benefit from quite a few dental interventions.

If SharkBite's newest addition is any indication of what's coming, we've got some time ahead of us in the ol' dentist chair.

While I'm not looking forward to what may be in store for the Biggs in the chomper department, it did inspire a dental plan of action...I'm sure it would be a reasonable plan for any kid, Down syndrome or not.  And, I'm sure it will be the topic of posts to come...

Thursday, March 17, 2011

Happy Endings

You've all suffered through enough poop-related posts to appreciate what I was thinking when I stumbled upon this trail of lovelies in my sister's kitchen.

I followed the path of pseudo-poo with halting steps, bracing myself for what might await me at the end of the treasure hunt.

Only to find...
Mr. I'mNotGonnaEatFood, making out with a chocolate peanut butter no-bake cookie that he'd nabbed from his sister.

Excuse me?

I haven't seen anything more solid than spooned yogurt pass these lips.  And I CERTAINLY haven't seen him showing any interest in getting it there.

Isn't it amazing what a little chocolate can accomplish?

Three cheers for unexpected happy endings.

Wednesday, March 16, 2011

We May Be in Trouble.

Something about watching LC on the phone with her dad makes me worry about the teenage years she has in store for us.


Mom's in the Picture Monday...on Wednesday...Whatever.

The squibs and I spent the first half of our Spring Break in Iowa with my sister and nephew, Curtie. 

Upon our arrival at their house, my sister announced that Curtis had a gift for me.  Curtis has only recently stopped referring to me as "Uncle Coke" and, frankly, his use of Auntie Cotes has been gift enough.

He ran out of the kitchen and, gleaming, presented me with a bright red Elmo hoodie.

My sister explained that, for Lent, she's decided to perform a random act of kindness each day during the season.  When Curtis asked if he could give me the sweater he saw while they were shopping, she purchased it as her random act for the day.

Random is probably fitting.  But I'm afraid my sister has confused the meanings of "kindness" and "lunacy".

Because the sweater she purchased was obviously sized for a mini-tween.   And I draw enough attention when I'm out with squibs on either hip WITHOUT large muppet eyeballs stretched over each of my breasts.

Curtis, of course, demanded that I model the garment.  And then, demanded that I ZIP the jacket to fully appreciate Elmo in his splendor.  There was an audible rush as the zipper closed and forced all the air from my lungs.  Luckily, I was able to convince Curtis the jacket was far too lovely for everyday wear and must be saved for special occasions.  Like church.  And meeting the queen.  And attending his wedding.
Love you, Curtie Jo-Jo.

Come visit us in Kansas soon...and bring your mom.  I think LC mentioned wanting to go bikini shopping for her Auntie Whit this afternoon...who knows what my little exhibitionist might select for her sweet auntie...

Saturday, March 12, 2011

A Sneak Peek...

...at Biggie's Easter duds.


Eli's Grandma Karen hooked.  him.  up.

Lookin' GOOD, Brother Biggs. 

Lookin' good.

Friday, March 11, 2011

Jace...in a Nutshell.

As Jace gets older and masters moving independently, we're beginning to learn more about his personality and overall approach to life.

Biggs is a man of extremes.

If he's happy, he's erupting with belly laughs.

If he's unhappy, he's horizontal on the carpet, shrieking and turning purple.

He is ridiculously messy.

He is ridiculously clumsy.

He is ridiculously loud.

And he is ridiculously sweet.




So, there's your visual aid for the day.

Jace, in a nutshell.

Where all nuts ought to be.

Thursday, March 10, 2011

Back by Popular Demand...



(You can also find this video on the "Pudge Videos" page.  It's underneath the Flipping the Bird and Hair Dryer videos...Find it by clicking on the button underneath our header...)

Wednesday, March 9, 2011

WW: Differing Food Philosophies






Disclaimer:  I don't feed my kids on the floor. 
LC snuck Jace's uneaten breakfast down from the table while I was putting Jace down for his morning nap.   
She polished it off for him.

Monday, March 7, 2011

Mom's in the Picture Monday

I don't expect this idea to carry on beyond the month of March...if it even makes it until then.

I'm a camera avoider.  PASSIONATE camera avoider.  I always have been. 

Because just when you think you have a sense of who you are in your own skin, you stumble upon a picture someone has taken of you and you're confronted with the fact that you look like some sort of mix of human being and tropical bird...with facial tics you never realized you had...and a perpetual state of bedhead, despite your best efforts.  And it's disconcerting.

It was, however, recently brought to my attention that...should I go missing...the only pictures law enforcement would have to aid them in their search were taken of me on my wedding day.  Five years ago.  And I don't think they'd be much help in locating the aged, fuzzy-haired human kleenex I've become.

There's also the consideration that LC and Jace will look back on their childhood photos and ask when the family adopted ME as I am completely absent in photos taken of all major life events up until now.

I have 22,000 pictures on my computer.

I am, literally, featured in fewer than 10.

So, I'm biting the bullet.  And forcing myself into a few.  And holding myself accountable by posting a weekly shot that proves my physical existence in the presence of my children.

Don't expect much, folks.

Baby steps.

Sunday, March 6, 2011

The Best of Intentions...

I thought I should show physical evidence that Sarah Marie cutes up boys as thoroughly as she does the girlies...

...but the lighting was wrong...



...and my talent was not cooperating.


So, while Sarah Marie doesn't create anything that promises a reduction in naughty...



...at least they'll look charming while they're committing it.


Pay her a visit and enter to win auction items to benefit Dariya's adoption...and tell your friends!

Saturday, March 5, 2011

Clear Evidence to the Contrary

Just in case any of you have started to doubt LC's status of "Luckiest Squiblet in the World"...

Please consider the following...

Yep.  That's for the Pudger.  It's a Pudge original.  And it was handmade by our brilliant buddy, Sarah Marie.

But the BEST part?  That sweet Sarah Marie's got cuteness up for grabs!!

Visit her blog...applaud her talent...but, whatever you do, ENTER TO WIN some of the amazing goodies her talents have produced in order to help bring Dariya home.

Ooooo...I feel a lot of cuteness comin' on...

Thursday, March 3, 2011

They've Got It BAD.

Girl Talk

LC typically ends each of her days by having a gossip session with That Girl.

Don't be fooled.  Her reflection is a complete and separate entity as far as Pudge is concerned.

video

And, don't worry.  We have no idea what they're talking about either.  We can only be sure that the topics are juicy ones.

Wednesday, March 2, 2011