September - Platelet Disorder Awareness Month

After two years...yes folks...it has been TWO WHOLE years since my last blog post.    :-(   Life has just been SOO busy...

Well...I just learned that September is "Platelet Disorder Awareness" month...

as a result...in an effort to share "McKenzie's Recent Journey"...I felt inclined to fire up the 'ol blog again...here goes:

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Bruises. What's the big deal?  We all have 'em.  

And what energetic (just as clumsy and careless as the next person) 6 year old doesn't have bruises?  It's pretty much a right of passage, am I right?  Well, our soccer playing, acro dancin' bike riding, tree climbing, always rolling on the ground with her little sister, McKenzie was no exception...however, in addition to the "I fell and bumped myself" type of bruises, she also had a significant amount of "unexplainable and refusing to heal" type of bruises (mostly on her legs, back and arms).  After several weeks, and more random bruises appearing on top of previous random bruises...add to that a new development of nose bleeds that would not stop.  I finally decided it was time to pay a visit to the pediatrician. 

Doc ordered up a CBC.

Drew McKenzie's blood.

Sent it to the lab.

Within minutes doc returned to our room.

"Mom", she said with a serious face, "McKenzie's platelets are significantly low".  "To put it into perspective, it's important for you to know that the average platelet count is 250-400...and McKenzie is currently at a 6.

"We still need to cross other "concerns" off the list, but it's likely McKenzie has a condition known as ITP (Idiopathic Thrombocytopenic Purpura).  Which is an auto-immune disease/blood disorder, in which her body attacks her platelets. 

"I just got off the phone with the Hemotology/Oncology clinic over at Children's Hospital. They have a room available for her and want to begin inpatient treatment right away."

As you can imagine...I was overwhelmed.  But more than anything, I was SCARED.  It was explained that without a sufficient amount of platelets a person is subject to internal bleeding.  These nose bleeds she has been experiencing could be indicative (or at least a precurser to) bleeding in her brain.  Big time fear set in.

A curious McKenzie from across the room chimed in "What does this mean?

"Well McKenzie" doc said matter-of-factually. "Here's the deal"  "Your body is low on platelets" "You and your mommy are going to get in your car and drive to a nearby hospital"  A worried look on her face, McKenzie asks "Why"?  "McKenzie this is a fun Children's Hospital, with lots of really nice doctors and nurses who are going to give you some medicine to help make you feel better".  "Do we have to stay the night?"  "Yes, it will be just like staying at a fun hotel, with games, and movies and stuff"   Will it hurt?  McKenzie asked.  "Yes, McKenzie, it might"  "But only for a short time.    This infusion is important in helping your body fight off these bad white blood cells, that are attacking your platelets.  Right now your Platelet count is very low, and it's important that we get that back up to safe levels"      "okay" McKenzie said. 

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so what's any "self-respecting" mom to do in my shoes, at that moment?  

1) Call Joe (bring him in the loop - Macy was hanging with him at the office during our doc visit)

2) Call my mom (to cry and ask her to pick Toby up from the groomer - oh and let Macy sleep over!)

3) Call my sisters (cuz that's what they're for)

4) Oh and post to Facebook of course.  This is the status update that brought my friends/prayer warriors into the loop and made us feel LESS ALONE!       

"Well...Miss McKenzie is getting treated to an immediate "staycation" at Children's Hospital resorts & fun park - courtesy of Blue Cross Blue Shield. Congratulations??  :-(   Due to an unfavorable CBC, specifically extremely low platelet count (among other symptoms), she will begin inpatient treatment for what is likely to be Idiopathic thrombocytopenic purpura (ITP). They'll run more tests to cross other concerns off the list. At this moment this is all we know for sure.

Please keep our sweet princess in your prayers. Hoping for a comfortable stay, quick recovery and complete healing."

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It turned out to be a long night...three failed attempts at inserting Intravenous Immunoglobulin (IVIG) into her veins (her bruising was just too significant). An IVIG is an infusion of antibodies extracted from the plasma of over one thousand blood donors...which will essentially overwhelm those "bad" antibodies that are attacking her platelets.   finally, around 3am...the fourth attempt was a success.

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Long story short...fast forward FIVE months later...McKenzie's body responded positively to that first IVIG infusion.  Since her diagnosis in April, she has only been restricted from activities for a short time. Her counts, while still low, have maintained at consistently "safe" levels.  We continue to go in weekly (sometimes bi-weekly) to have her platelet counts checked.  So far so good.  She was given the go ahead to resume all school activities, dance classes and sports.  I'm not gonna lie though...girlfriend HATES those frequent visits to the hospital.  Some weeks are all out drama-fests.   :-/

We are optimistically hopeful that, after a few more months of close monitoring, it will be determined that she has an "ACUTE" version rather than a "CHRONIC" version of ITP and she will go into "remission."  It can take as long as six to eight months for this to happen.  Crossing our fingers, and sending many prayers up daily! 

Something that brought strange "contentment" and satisfaction to McKenzie's heart and mind, was coming to the realization that everyone has their "stuff".    "Macy has her "thing" and now I have my "thing."     Okay.  I suppose that's one way to look at it!

In the meantime, we do the best we can to make her appointments fun.  In some way, I see it as wonderful "mommy/daughter" bonding time.  #alwaysasilverlining!   :-)
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In other news...McKenzie tells us she wants to be a scientist when she grows up.  
ha!      #figures.    :-)

 I love this kid!   

Special Olympics Young Athletes 2012-13 kickoff

Building a stronger foundation, to ensure the most promising tomorrow can never start too soon!  

While people with Down Syndrome have more advantages and resources at their disposal to assist them in living successful and full-filling lives (compared to that of  yesteryear) - the future's lookin' bright!...they still, however, have much to overcome...along with the intellectual disability that accompanies this extra chromosome also comes various physical challenges.  People with DS have low tone, so it is important to work on proper form and technique at an early age.  Macy WILL do everything her big sister does.  It may take a little bit longer and she may just have to work a tiny bit  whole lot harder.  But that is okay.  This makes conquering each new goal ALL THE MORE REWARDING!!  No milestone goes uncelebrated  :)

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We had our first Special Olympics "Young Athletes Program" of the season last night.   15 Young Athletes and siblings participated!!  Great showing  :-)

The PT students did a wonderful job of keeping it organized, structured and keeping our kiddos engaged the entire time.  Sure, there were a few "escapees" every now and again, that's going to happen, but everyone did a great job scooping and rounding them up!  Bringing the runaways back into the mix. 
Macy enjoyed getting together with her friends and is already looking forward to next week!!
A big thanks to the staff at Special Olympics NE (especially Hannah) for supporting this program.  Tony and the D.A.D.S. group for getting it started 8 years back, The UNMC PT students (led by Emily & Danielle) for contributing their time and talents to our amazing kiddos, and a HUGE thanks to Elite Cheer for allowing us to utilize this great space year after year.  This venue is centrally located and lends itself PERFECTLY to this type of activity.  The gymnastics mat is especially forgiving to our little one's knees as they learn new skills & abilities.   

I am excited to be playing a more significant part in it this year (from the parents perspective).  Just want to keep my finger on the pulse and ensure it continues to thrive!  I also want to assist in the area of communication to make sure everyone knows what's going on and always feels welcome!

Here are some pics from last night  :-)

They formed circles at opening and closing where they stretched and sang songs, etc...as well as about every 10-15 minutes to bring the kids together and refocus their attention.  I think that was a great idea and very efficient at achieving that goal!

Hi Addi!

she's sure got Macy's, Eisley's & Jaxson's attention here

go Jaxson go.

Eisley, Charlie & her big bro Bobby.

Brady takes a turn going through the tunnel

GOOD JOB BRADY!!

Hannah helps Charlie & Vollen out with the balls.

Macy spinning with the scarfs.

This activity kept her attention for quite some time.   It was like she was off in her own little world!

oops.  Vollen takes a break to watch the cute cheerleaders down in the gym below.  Can you blame him?  hehe  silly boy!

Jaxson's big sister is SUCH a good helper!!

perfecting her balance beam skills.

hula-hoops are always a win-win for Macy!

so much fun to be had with a simple hula-hoop.

Eisley and her sister RUSH excitedly to the next station.

over & under...well...mostly under for Miss Eisley.  Whatever gets you to finish huh?   :-)  GOOD JOB!

Brady trying to figure out what his silly parents are up to...

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The Young Athletes Program not only teaches productive movement and strengthens physical development, it just as importantly facilitates an awesome opportunity for our children to get together regularly and form a tight-knit bond that will (hopefully) last forever.  These friendships and steadfast camaraderies are just getting started!   It will carry through to when they are able to compete on a more competitive level in the Special Olympics Program.  This will benefit each of them ON and OFF the field of play.  :-)

We want to, of course, expose Miss Macy to as much as possible.  Whether, she finds her niche to be art, music, dance, drama, etc...I'd be lying if I didn't admit that I honestly want nothing more than to see my baby girl "shine" in the area of sports some day!  I feel she will be a "better, more well-rounded" person for it.

Back to it... oh & it's DS Awareness month!

Warning - I feel a long-winded, somewhat incoherent and perhaps irrelevant ramble coming on here...I've been in a bit of a funk lately, and I think "getting it off my chest" is what the doctor has ordered!
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Can't believe it's been 45+ days since my last blog post.  eeek!  Perhaps I'm having withdrawals.

One might be thinking..."good for her"!  Another may assume it's because her priorities have finally been appropriately aligned.  Like maybe those dishes aren't still piling up, that laundry mountain(s) has been tackled, maybe those rooms (yes ROOMS) filled with "waiting.to.be.donated" items have been delivered to their desired destinations...but no.  As we speak dishes mount (AGAIN), Mt. Everest is still waiting to be put away (AGAIN), and those boxes in undisclosed areas of the house are still (sadly) collecting dust.   :-(  It's the crazy-cycle around here!  Of which I'm sure ALL can relate.  You're just lying to yourself if you deny it.

Let's just say (aside from my motherly/wifely domestic duties) my little photography biz has also picked up speed.  Fall is "primetime" for family pics!  I am loving this new state of "self-inflicted busyness" I have for no good reason, other than it's fun (?), thrust myself in.   oh well.  It is what it is.  And I am thankful.

Can you believe THIS IS MY 500th blog post?  I know.  What?  How did that happen?  Too much time on my hands I guess. (right!)  But seriously, where has the time gone??!?!  It seems like decades ago that I wrote that first post...

I've been absent from the blogosphere for so long, I almost feel like I need to "re-introduce" myself...

Sometimes, my focus is SO MUCH about my children, that I feel hidden in their shadows.  I have been spending so much time editing other families digital memories and am behind the lens so much, that I rarely get captured in the viewfinder.  Which is fine (because I'm not the most photogenic), but also somewhat hypocritical.  There is some buzz going around the World-Wide-Web about the "disappearance of moms"...you know, we use our kids faces as our Facebook profile pics, our calendars and Social Media "check-ins" revolve around our kids' schedules, etc...

As a person who is insistent and almost obsessed with documenting history and journaling important events/milestones as they happen, I am somewhat dissapointed in my efforts of preserving my own sense of self.  What footprints am I leaving behind?  who knows.  who cares.

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so here goes.  (below is an introduction I wrote for another "project" I was working on & didn't want to see go to waste)  hehe

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I am a young professional (former Advertising & all things Media JUNKY), turned stay-at-home mom, special-needs advocate, picture-taker, video-maker, church-worker/volunteer and blogger.  Oh & newly crowned V.P. of the DSA.  woot! 

During this season of my life, family is my whole world.  I am trying my very best to take full advantage of every moment with my children while they are young (while trying to suppress, as best I can, those all-too-familiar temper tantrums of course).  Seize the Day.  I have a wonderful husband who stands beside and supports me in all I do.  For this I am grateful.

I officially became a blogger during the wee morning hours back in January 2010, not long after our second daughter Macy was born.  Our family blog was initially created (while spending many quiet hours in the Children's Hospital NICU) as a way of sharing health (and emotional status) updates with family and friends.  You see, we had just learned, that our Little Miss had Down Syndrome.  Our world was rocked to the core.  Every thing we thought we knew was being challenged.  Priorities reassessed.  Life goals realigned.  It's crazy to think how something as simple (and microscopic) as an extra chromosome can change everything (but also, in many ways we later find, not much at all).  

Now blogging serves as a type of therapy, release and creative outlet for me. Getting my thoughts and feelings down on “paper” allows me to better process all that is going on.  Not to mention a fun way to journal our adventures as we adjust to this world of Special Needs and simply being a family of four :-) 

"We write to taste life twice, in the moment and in retrospect." --Anais Nin 

I'd say the same theory applies to picture taking.  I have a passion for snapping photos of everyday occurrences from creative angles and perspectives, to later being delighted to discover the beauty & wonder that is (sometimes accidentally) captured. Forever frozen in time in the form of still frame images.  I guess you could say I’m obsessed with weaving pictures and words to tell a story, our story.  We all have a story, each one deserves to be shared.

"A shutter is clicked, the flash goes off, and you've stopped time, if just for the blink of an eye. And if these picture's have anything to say to future generations it's this: I was here, I existed, I was young, I was happy, and someone cared enough about me in this world to take my picture." ~one hour photo

If my blog posts (which are eclectic & random at best) happen to create a bit of awareness and understanding and perhaps inspire acceptance for individuals with Down Syndrome.  That's an added bonus!  My main goal with each post is to share ideas (educational otherwise), resources, triumphs, challenges, struggles and successes.  But most importantly, my objective is to simply connect with families, friends, evens strangers, who walk down a similar life journey.  Through blogging, I have learned that this world is much smaller than originally suspected.  We are NOT alone. 
If I am just one "happy" post away from saving just one precious (and life-deserving) soul from being terminated in the womb, due to it's "genetic make-up", than so-be-it.  It just might be worth it after-all!

A little more about me? I married my college sweetheart on September, 21, 2002.  Joe and I are the proud parents of two beautiful baby girls.
Both my girls are perfect...
McKenzie (5) is special beyond measure, as she's the one who taught me how to love & gave me a "momma's heart"...Little Miss Macy (almost 3) is the one who broke this "momma's heart", shattered it into a million pieces and repaired it 100x BETTER than it was before!
Macy happens to have Down Syndrome. But Down Syndrome does not define her or our family. She is amazing. We are so thankful to be on this journey we call life with her.  Afterall, it's the journey, not the destination.

We live in Elkhorn and things we love most (in no particular order) are spending quality time at home, heading out to the lake for the weekend, cleaning, sitting on our front porch, watching McKenzie & Macy's imaginations at work, annual trips to Estes Park, "mommy & daddy" date nights, Husker Football, CWS, good food, mission work, photography, VOLUNTEERING, family, friends and therapy.  Yes, therapy.  Macy has a wonderful team of OT’s PT’s, Speech Pathologists and special Education teachers who help her push toward conquering new milestones.  EVERY skill & ability is celebrated at the Harnisch House.  NOTHING goes unnoticed, nothing gets taken for granted.  Advocating on behalf of my daughter and all people with special needs does not consume my life, but most certainly is an honor and high priority.

okay - so there's my little "bio"
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I feel it's appropriate that this post (incoherent ramble) comes out as we near the completion of Down Syndrome Awareness Month.  It is during this month of October that I'm supposed to be focusing my posts on Down Syndrome (here's last years post), helping to generate awareness and acceptance for all those who posses this extra (some call magic) chromosome.  Helping to facilitate a sounding board for all issues, challenges, successes and resources relevant to the interest of Down Syndrome. 

So, I guess...in some strange way, that is why I'm glad this post does not JUST focus on Down Syndrome.  That would be an injustice.  And we shouldn't give this chromosomal abnormality that much credit.
After-all, Down Syndrome Awareness happens every waking moment of our entire existence.  It is in celebrating the SIMPLE things in life that acceptance happens each and every day.  Not just during the month of October. 
In fact, it is when we acknowledge the craziness and normalcy all intertwined together into one very complicated existence when "awareness" is truly spread.  Awareness that...IT'S ALL GOOD!  Ob-La-Di Ob-La-Da (Life Goes On)

I hope it illustrates the fact that our stresses and anxieties are stemmed by the very same annoyances that plague everyone else down the street, around the corner and across the country.  (I will say, however, that all this extra assessing, evaluating & testing by Macy's TEAM as of late (cuz she's almost 3) does have me a little anxious (and quite honestly, inconvenienced).  oh & just had big sister's first Kindergarten P&T conference today, turns out, our "typically developing" kiddo has some things that don't come quite so easy to her either, go figure, looks like we have things to work on with her too - HA!) 
But, all in all, my mind is not consumed with worry, fear or anxiety as it relates to the unknowns of our girls future, etc...nope, I AM totally stressing, rather, over the fact that those dishes are NOT washing themselves, wondering why the heck (in this 21st century) they have NOT invented machines that wash/dry/fold & put away our d@mn laundry FOR US.  I mean seriously, is that asking too much!  And for the love of God, why hasen't that SAINT of a DELIVERY TRUCK arrived in my driveway with 4 strong men knocking down my door to take MY OLD CRAP AWAY!!!

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So there.  That's it.  I just HAD to get that off my chest.  I feel amazingly better!  Thanks for listening (reading) - your genuine interest in my mental state has saved us a boat-load in therapy bills.  ha!

Now, in these next few weeks...I have a lot of blogging to catch up on and will (in the future) make an effort to get our family happenings (big & small) posted in a more timely fashion.  less words, more pics!

This fast approach of cold/non-photo-friendly weather, coupled with the arrival of Daylight Savings is sure to assist me in achieving this goal.  :-)
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I leave you with one picture!

a recent return trip to our favorite place in the world

one more...because y'all know it's dang near physically impossible for me to take, let alone, post just ONE picture at a time.  This was in Ponca last week  :)  Yay Leaves!!

Our Tiny Ballerina...and how it's not about "dancing"

Our Little Miss Macy is an OFFICIAL BALLERINA! She had her first class the other day at Rennae's School of Dance...and totally rocked it!! She followed directions, did (almost) all the moves, took turns, waited patiently and HAD SO MUCH FUN!

All thanks to her amazing and very special teacher, Miss Kathy, who does such a great job of engaging, redirecting, and being patient with our TINIEST OF DANCERS :-)  I'm sure it helps that she also happens to work as a TA for students in Special Ed at a nearby elementary school!

follow this link to check out the VIDEO (warning, it's LONG!) - so, in case you're bored...and looking for a way to pass the time...
Here's a little something to help you get through the next 8 minutes of your life...perhaps bring a smile to your face and some inspiration to your heart.  :-)

Macy's First Ballet Class...THE VIDEO!   click here

Sorry...I couldn't bring myself to edit those clips down much more.  So this is what we get.  :-(     hehe!!!    

I just love how even her classmates are helping to keep her in line  :-)

Big sister gives her a few "pointers" before leaving the house  :-)

Macy tells me "YEP, I think I can do that!"

"like this?"

big sis was demonstrating how to do the splits...

but, pretty sure Macy had her BEAT!  That hypotonia (lax ligaments as a result of low tone associated with Down Syndrome) is tough to compete with.  hehe

I am seriously still in tears thinking about how wonderful Macy did that morning. Honestly, I had lowered my expectations (as to not be dissapointed)...and thought "if Macy would even last just 10 minutes before having to be pulled out, I'd chalk it up as a success".  But Miss Kathy kept her attention and on-task the ENTIRE TIME!! HUGE kuddos to her :-)

These last couple years, Macy has proudly supported and sat on the sidelines for big sis.  A full year of Gymnastics and another of Ballet & Tap.  Last year, while waiting patiently in the lobby, Macy was REGULARLY pulled into an adjacent studio and "coached" by little girls who were between classes.

So, yes.  Macy LOVES dancing (or maybe it's just the watching herself in the mirror part -whatever).  She loves mimmicking the actions of others - you know the tune..."anything you can do, I can do better".

But, do we think she's actually ready for a full-fledged class??  Not really.
I received a note from Miss Kathy explaining that the 3 year old ballet class is small and even has another 2 year old in it...so if we were still interested...Macy would be welcome to join in.
I was TICKLED!!

We have devised a plan and so long as I am on-site during her classes, to help with potty-training and to be available to pull her out & allow her a "break" if needed.  Sometimes, kids just aren't "feeling it" and are entitled to "off-days" as well.  This would apply to any two-year old really.  :-)
I don't want to put too much pressure on her teacher and have her diverting too much attention towards Macy...so we have a simple "exit-strategy" in place!
My biggest thing is that I do not want her to be a distraction or take away from the other girls' experiences.

arriving at the studio

greeting a new friend!

SOOO excited to "get this party started!"

Coincidentally, McKenzie has a tumbling class in the next studio over, so we would have been there already anyway.  It's awesome how things just work out sometimes :-) 

So give it a try we did!  And Macy impressed the SOCKS OFF ME!  :-)

borrowed a cute boy's (Ben's) phone to take care of some business before class starts.  hehe

stretches!

What a HAM!!

To most this may have looked like your every day, run-of-the-mill, ballet class...
and it was...
but to this momma...
it was so much more than just dancing.

Sometimes, even I myself, overlook and forget the challenges she is up against.  People with Down Syndrome have physical and intellectual disabilities.  So, if you would have told me after she was born that she would/could be participating (and succeeding) in a "typical" ballet class.  I'm not sure I would have believed you.

I can't help but be impressed (and get emotional) when watching this video.  For three reasons:

1)  She is demonstrating the intellectual and cognitive desire to focus and follow the directions of her  teacher for the entire 45 minutes!  (Miss Kathy's fierce eye contact & constant stimulation helps keep Macy in line)
 
2)  She had the physical stamina to stick with it for that long as well.

3)  Macy, like most children with DS, was a late walker (due to low tone)...those PLIES would be hard for any toddler to do, let alone a toddler with low muscle tone. (it's no wonder she had to stop for a few "breaks").  Also, kiddos with Down Syndrome often walk with "wide gates"...Macy is no exception, so the fact that she can put those toes together, point them and hold them like that for any amount of time, is awesome to me!  She has a few balance checks while in this position, but as you could see in the video, she was trying SOO hard!! 

I am so proud of my baby girl!  And thankful for her kind, patient and engaging instructor!