Target Euphoria

Outings with Reagan are an adventure.  You never know which of her personalities will emerge once we hit the double doors.  The scenario usually goes one of two ways:  either I'm chasing down a crazed toddler in the frozen food aisle or I'm lugging a 30-pound something on my hip while awkwardly navigating the 24-foot long cart designed specifically for children.  It's never a pretty sight.

For the hardcore parents out there wondering why I just don't strap her in & show her who's boss, I'd rather actually get some shopping done before being kindly asked to leave.  I get it;  a head-thrashing, body-flailing, loudly-screeching toddler isn't the best for business.

This particular trip was heavenly...

 I somehow managed to transfer her sleeping form from carseat to cart.  And no, she is not drugged.

 This arrangement prevented me from buying in bulk but we got what we needed.

 And Reese didn't mind helping out with the "Do Whatever It Takes To Keep Reagan Asleep" mission.

She finally stirred when we hit the driveway & her beloved Laurel was spotted.

This particular shopping arrangement was a win-win.  Reagan caught a few much-needed Zs, while her mom & sister enjoyed a much-needed trip void of drama.

Here's to coordinating more Target outings with naptime.  Genius!!

Zebras & Ghouls & Bears, Oh My!! {31 for 21}

Today is Halloween.  Thankfully Sadly, it's also the last day of the 31 for 21 challenge.  I definitely got behind from time to time but ultimately ended up with a total of 31 posts so I'm viewing it as a success. As much as I enjoyed sharing Reese's story, I'm relieved to no longer have homework on a nightly basis.  It definitely got me back into a blogging mindset but I think I'll be more like a weekly rather than daily blogger.

On that note, I'm ending the challenge in the easiest way possible...a bunch of cute photos of cute kids.

 Our little Butter Cup (Ben's idea - I can take no credit)

 No nap + crazy homemade costumes = disaster

 The gang of 99th Terrace minus one belligerent green M&M

 who chose to lose her mind at the feet of her mother instead

 Thankfully she has a Jekyll & Hyde personality & all was well when Goose & Maverick appeared.  Unfortunately the enthusiasm might have been misconstrued as evil - the poor twins look a bit rattled.

 Mallory showing her the trick-or-treating ropes

And she was a pro by the end of the night

Happy Halloween & Down Syndrome Awareness Month!  Thanks for taking the time to get to know all about Reese & her extra chromosome.  

You Tube {31 for 21}

Dancing machine...

X-rated {31 for 21}

Occasionally when patients are admitted to the ICU they are either too sick or too impaired to provide any information about their past medical history.  And when family isn't around to fill in the gaps, we have to use what's available.  Often times that means we use their scars to tell a story.

Reese's little body already has quite a story to tell.  Down syndrome, previous open heart surgery & past feeding difficulties would all be obvious with just a cursory examination.

I thought a lot about Reese's scars before she underwent the knife.  Would they be another source of potential teasing?  Would they affect her body image or make her self conscious?  Would she always opt for one-piece bathing suits over bikinis? (think Dad would be just find if that were the case)

In all honesty, I don't even notice them anymore.  Partly because they are in locations that are normally covered, but mainly because they are just part of who she is.  Just like I don't notice Reagan's stork bite or the scar over Ben's eye.

If anything, Reese's scars are daily reminders of her courage & resiliency.  Occasionally I'll catch a glimpse of the white line peeking out above her shirt collar & I'm reminded that life is precious.  I know fellow heart moms will agree.  We were at one of Reese's sign language classes when another mother noticed the faint line & gave me a knowing glance.  She lowered the top of her son's shirt to reveal a matching faint line & we both smiled.  Smiled because thankfully the surgery is part of the past, but also because our kiddos share a special bond that identify them as pretty tough cookies.

Reese's skin doesn't lie.  Her roadmap of scars is proof she had a challenging first year.  I like to think that if the saying "whatever doesn't kill you makes you stronger" is true, than Reese is freaking indestructible.

Wordless Wednesday {31 for 21}

Bathtime is a mutual fave around here...

 It is so hard to get this girl to smile

 Don't mind the big wound on her forehead - long story

 I told you she is a little Hoover - she even drinks bath water

 A hint of a smile - we are making progress!

The finished product

Well of Kindness {31 for 21}

My brother wrote a moving piece about having a niece with Ds.  In it, he talked about humanity's Deep Well of Kindness.  I have been witness to this particular Well on many occasions since Reese's birth, but think the events of the last few months take the cake.

The Step Up For Down Syndrome Walk was this past weekend.  The process of registering & donating for this event began months ago.  Since this was the first year of putting together a team, I didn't really know what to expect.  The website asked you to set a goal for the amount of money you hoped to raise.  I thought about that number a lot & sort of cringed when I asked Ben if he thought $2000 was too lofty.  He sort of mulled it over and finally said, "well, a true goal shouldn't be easily attainable," so $2000 it was.  Boy, did I underestimate the Deep Well of Kindness within my friends & family.

We surpassed our $2000 goal in weeks.  I was overwhelmed, actually shocked by the generosity of others.  We received donations from everywhere.  From high school friends I hadn't talked to in years, from Chicago pals who'd been following Reese's story on our blog, from friends of friends who'd never met our girl but still cared for her well-being and from complete strangers who I guess just felt compelled to help because they are good & kind people.

I thought about upping our goal but didn't want to appear greedy.  Then we were surprised by another act inspired by the Deep Well of Kindness.  My longtime friend, coworker & Sporting KC fan got two autographed items donated to Reese's cause (all unbeknownst to me).  She & her equally awesome boyfriend suggested raffling the items & donating the money to Reese's Step Up fund.  Our fundraising total at the time was $4000-something so we decided to shoot for a goal of $5000.  I announced the raffle on Facebook & we surpassed the new goal within a few hours.  Of course I was overwhelmed again & more tears were shed but I wasn't nearly as shocked.  I had already experienced the Deep Well of Kindness & knew anything was possible when you combine a good cause with good people.

Reese getting some love from my amazing friend, Dana

The official fundraising deadline was last Saturday.  At that time we had raised over $6600.  I was amazed.  And proud.  And thoroughly indebted to each & every one of you who supported our girl.  Imagine my surprise when I checked the website a few days later to see that number continuing to rise.  Apparently deadlines don't mean a thing to my friends & family & complete strangers - they give just to give.

Meet Lyllian, a busted knee didn't slow her down.  I should mention Lyllian & her mom had never met Reese...or me...or Ben before the walk.  Amazing people.

 



The week before the walk my neighbor shared a conversation she'd had with her 9 year-old twin daughters.  They'd heard about Reese's walk & wanted to learn more about Down syndrome.  After conducting their own research online, they both decided they wanted to contribute some of their own money to the cause (FYI, their parents had already generously donated AND entered the raffle).  So I found it only fitting that the money they hand delivered to Reese's door was the money that propelled us over the $7000  mark.  Apparently the Deep Well of Kindness doesn't apply only to adults.  And Kamryn & Kiersten are already entertaining several fundraising ideas for next year.  The Well is overflowing in these two girls.

Then Saturday was upon us & the weather was not cooperating.  To say it was cold is an understatement & I thought, "uh oh, this is gonna keep the crowd away."  Boy, was I wrong again.  Reese's Rebels came out in full force as did the rest of the 9,000+ walkers that day.  Dear friends bundled their babies beyond recognition because they couldn't stand not walking with Reese (I know, double negative). 

 Please notice the overwhelming trend of hats...

 and blankets...

 and coats...

and layers...

it was cold!!!

At least there were ponies!!

 

Kids missed soccer games & big kids missed the Mizzou Homecoming game both in person & on TV but, in their own words, "some things are just more important than a game."

 Aunts & cousins braving the cold...

as well as FaceTime buddies who singlehandedly raised hundreds of dollars for Reese's fund

 

Some of Reese's friends even designed their own attire for the special day.

 

 The infamous Lukie

And the twins who have made appearances in almost every post

 

And every single attendee gave up precious weekend & family time to not only support Reese & our family, but to support a cause that touches thousands of lives. 

Many thanks to Elece for the awesome banner.  And many thanks to Ben for inventing the coveted PVC banner frame.  Boys and their toys... 

 

Reese's Rebels Rock!!!

 

I've discovered this Deep Well of Kindness does not apply only to Reese & her pals with an extra chromosome. 

My friend Karen recently started an online campaign to do something extraordinary for her cousin & her family.  Directly from my friend's website:  Jill and Ryan Taylor have been married for almost 10 years and have three beautiful little boys. Ryan is 37 and has been living with stage IV colon cancer for the past four years. As Jill's cousin, I've been watching their story unfold for years via Facebook and for a long time I've wondered what can I do for this family? I finally stopped wondering and just asked, "Jill, if Ryan could have anything, what would he want?" She responded, "A family vacation. And maybe the chance to meet Guy Fieri, that celebrity chef from Diners, Drive-Ins and Dives."

The campaign was launched 7 days ago.  They are $300 short of their $7000 goal.  Yep, that says seven thousand dollars.  We were fortunate to be one of the first to donate, when that $7000 goal still seemed daunting, & I feel like a giddy kid on Christmas morning every time I check the website & see their total quickly rising.  I talked to Karen at the walk & she said the same thing.  Sure, most of the donations are coming from friends & family, but some are coming from absolute strangers.  Random friends of friends of friends who saw the story on Facebook & felt compelled to help.  People, this Well of Kindness is serious.

And it doesn't always have to be about money.  I know times are tough.  You see it every day in the news & in the foreclosure signs on houses in the neighborhood. 

Ben's coworker & his wife recently gave birth to a beautiful baby girl.  Their little bundle decided to make her entrance VERY early & was in the NICU for weeks.  Her mom was prepared for a 12-week maternity leave.  She had worked hard & saved up plenty of PTO so she could enjoy those months at home with her newborn.  Well, as it often does, life had other plans & she spent those 12 weeks in the hospital instead.  Her coworkers got wind of her plight & the Deep Well of Kindness took over.  Within a few days, this mama's PTO bank was overflowing & she was able to spend every day at her daughter's bedside & even a few within the comforts of their own home.  All without missing a paycheck & all because of the kindness of others.

The Deep Well of Kindness is apparent every day.  The Well doesn't always make headlines but it is abundant.  Maybe it's because I'm more aware of how the Well truly impacts the lives of others or maybe it's because we've been on the receiving end of that Well many times over the last 13 months, but I am in awe of it.  And I am beyond thankful.  So are Reese and her friend, Brooks.

A match made in heaven

Vitamins & Vaccinations {31 for 21}

I have a science background.  I went to PT school & then nursing school so have taken more biology & chemistry & physiology courses than I care to remember.  Unfortunately I had little knowledge regarding an area of science that would've served me well after Reese's birth, genetics.

I recalled basic information about chromosomes & genes & DNA but didn't really understand how having 3 copies of the 21st chromosome would affect Reese.  Needless to say, I've learned more about chromosomes in the past 13 months than I did through 19 years of school. 

Much still needs to be discovered about how that extra chromosome affects development but scientists know far more today than they did even 10 years ago.  And many of those scientists describe Trisomy 21 in terms of a metabolic disorder.  To oversimplify, the extra chromosome causes an overexpression of genetic material resulting in biochemical abnormalities & an overproduction of free radicals. 

Some theorize that supplements & other herbal remedies can help reduce or eliminate some of the problems associated with this overexpression.  Nutrivene-D is the big name in the supplementation game & they have a special concoction formulated just for kids with Ds.

I am intrigued by this information.  It makes sense to me that having 3 copies of a chromosome can result in metabolic disturbances.  That extra genetic material has to be expressed in some way & I'm sure it explains some of the common characteristics of Down syndrome.  My science-minded brain appreciates the fact that very smart people are trying to identify how that extra chromosome affects Reese & her pals.  I also appreciate the fact that very smart people are also trying to identify treatments &/or therapies that will help improve the quality of life for all individuals with Ds.  What my science-minded brain doesn't like is the lack of evidence-based research that proves the efficacy of these treatments.  As far as I know, there aren't any double blind experiments that evaluate the efficacy & safety of Nutrivene-D (maybe they do exist - I just haven't been able to find them).  Lots of kids with Ds are taking these supplements (I believe one site guesstimated the number to be ~5000) so there are a lot of parents buying into the concept.  And some parents are very vocal supporters.  I've read account after account about how Nutrivene-D was absolutely life changing, how their kiddo exhibited significant gains in speech or motor skills or cognition within a matter of days of the first dose.

These parents have no reason to lie.  I doubt any of them receive any royalties from Nutrivene-D or any other company in the same industry.  And if the results are as significant & profound as these parents claim, then I'm even more intrigued.  But I hesitate to put anything into my daughter's body that hasn't been tested & retested & approved a million times over by the FDA.

So, I guess the whole point to this post is that I'm not really sure where I stand on supplements.  In theory, the whole idea makes sense to me but in reality, the territory is still a little too uncharted for my liking.  And in no way do I consider myself an expert on the subject.  Lots of moms & dads out there in blogosphere are far more educated on the subject & I enjoy reading about their experiences.  I have no doubt there will be more definitive research on this subject in the future which will make my decision whether or not to supplement a much easier one.

Last but not least, a few words on vaccinations.  I am a FIRM believer in vaccinating children.  I will argue against the autism link until I'm blue in the face (and also show you article after article about how Dr. Wakefield has been proven a fraud & all conclusions of his studies have been debunked.)One of my first questions to Reese's pediatrician during her initial visit was whether or not she would be on a regular vaccination schedule.  (I had read that some of our kiddos do better with a modified vaccination schedule, possible due to an immature immune system.)  He was unwavering when he said yes & so Reese has gotten every single one of her vaccinations on time.  She also received the Synagis vaccine last year during cold/flu season to hopefully prevent RSV which added six more shots to her regime.  Thankfully, she's had absolutely no problems & we will continue to keep her on a regular schedule for as long as possible.  That being said, I know a lot of parents have their kids on a modified schedule & it works just fine for them.  I don't think there's a right or wrong answer as long as the vaccinations are being given.  Okay, enough of my soapbox.

Parents make tough decisions every day regarding their kid's health & well-being.  Having a child with special needs makes those decisions a little tougher & often leaves me feeling overwhelmed.  I trust science but I also trust my gut and think between the two, Reese is gonna be just fine.