Tuesday, June 17, 2014

The Whimper that started it all


In order to bring you up to speed with the present I must, first, take you to the past. April 3rd 2014- as I was walking passed Natalie's bedroom door I heard a distinct whimper. THE whimper. The one that she makes only when she is sick. I couldn't throw open her bedroom door fast enough. What my eyes discovered was a pale & weak little girl. I scooped her up and rocked with her. Ben and Hannah joined me, but Natalie was not interested. She always expresses interest in her sister, but not this day. Her skin grew more pale until it creeped upon her face and her eyes become more distant as the seconds passed like hours. This ordeal lasted approx 7 minutes, but it felt like 7 years! My first thought was, she's having a small seizure because once she came out of her episode, she was tired and lethargic. I was on the phone with the pediatricians office as soon as they opened, I secretly wondered if I was the first call and if I could win some sort of prize. In a way I did, because Natalie scored an appt with her primary doctor as soon as I could get her in the office.   After spending the better portion of our morning in the pediatricians office, we had an action plan...a visit with a local, lauded & loved neurologist for the next day, an EEG and an expedited sleep study.

  The very next day, April 4th, little miss Natalie had a remarkable appt with Dr. Fischer. She impressed him with her abilities and receptive language skills. The fact that he took his time with her, allowing get-to-know-each-other opportunities via play was astounding and is practically unheard of with physicians these days.   Natalie played with toys and books in his office while Dr. Fischer and I discussed Natalie’s extensive medical history and recapped her ‘episode’ from the day before.  Dr. F gave her a thorough exam and she allowed him to listen to her heart, look in her ears, nose and throat without batting an eyelash…typically she gives the doctor hell and makes them work for such an exam.  But not for Dr. Fischer!   For him, she was a complete angel…and that made him adore her even more.  At the end of our 1.5 hour session with Dr. Fischer, he concluded in his best judgment that she’d not had a petite mal seizure and that we should follow up with her cardiologist.  However, we were to have an EEG just to be sure. 




     To spare you the boredom we shall fast forward through many phone calls & email exchanges all to get Natalie booked for an EEG, Sleep Study, and a cardiology appt.   I swear it’s a full-time job in and of itself to be this little girls personal assistant! The EEG was booked right before our trip to Denver, the Sleep Study was for the evening immediately following our arrival home from Denver and her cardiology appt was booked for May 18th. 

     Between Natalie’s episode and our impending trip to Denver (it was a Natalie & Mommy trip with a dear friend and her daughter to see a nationally recognized Down syndrome clinic and have Natalie evaluated by the Physical & Speech Therapists) the Rohe’s were caught up in a whirlwind.  Natalie’s EEG was booked just before Denver and I was feeling incredibly anxious and emotionally depleted, so Ben joined us to this trip for support and boy was I glad…I needed his emotional support so I could be the mommy that Natalie knows & loves.  At the end of another 1.5 hour appt I felt like I could use a stiff drink…and it was only 9 in the morning!  And I still had to go home and finish packing for our trip to Denver!    

Denver trip was an absolute blast!  We both have fond memories of our time spent with Shannon & Piper!







   
At last the 18th of May was upon us and it was just Natalie and I venturing to her cardiology appt.   I was a mix of emotions this day, as no test so far could tell us why Natalie had an episode of unresponsiveness.  First on the adgenda, EKG…all clear, nothing out of the ordinary.  Next up, echocardiogram (essentially it’s an ultrasound on her chest).  We are greeted by Mary and taken back to her room.  I remember her from when I was pregnant with Natalie and we had monthly fetal echocardiograms.    Mary had recent;y had a son when I was there for one last echo, right before Natalie was born, so I made sure to ask her how he was doing, realizing he was about 3.5 yrs of age.  After making some small talk, she began her process.  Considering Natalie has about a dozen of these under her belt, I know exactly what they are looking at and for, so my heart completely sank when she got to Natalie’s left AV valve…I knew something wasn’t right.  I decided to keep calm and wait for the doctor to discuss the finding with me.  Of course I would have to wait an additional 30mins for the echo to wrap up before we could be placed back in an exam room to speak with her cardiologist.  When Dr. B entered the room, I could tell by the look on his face that he didn’t have good news to share.  Sure enough, he said that Natalie has moderate to severe regurgitation on her left AV valve.  I wanted to scream and cry “but you told me in a post-op visit that she only had a 15% chance that she would ever need surgery again!  That’s an 85% chance that she WOULDN’T require surgery!  And now you’re telling me that her valve is failing?!?” but I refrained.  I kept my composure and listened to all that he had to say.  After much discussion, we left with a prescription in hand, as the decision was to trial Natalie on a blood pressure medication to see if it will help alleviate some of the pressure on the valve and perhaps that is all it may need for the regurgitation to decrease.  Right now we wait.  She will follow up with her cardiologist in August. 
      This prescription we left with is for a special medicine that has to be compounded…which means it comes from a special pharmacy.  As I pulled up to the special pharmacy, my heart sinks…I don’t want to go in, I don’t want to get this script filled…well, I do want to get it filled!!  Especially considering my daughter’s life depends on it…but I think you get the jest…I shouldn’t be here, in this parking lot…there was an 85% chance that this wouldn’t happen…why is Natalie part of the 15%?!?    I sucked it up and headed in, handed over the script and waited the 2hours for the medicine to be compounded to the specifications required for her.  I leave there with a bottle of cold medicine and two oral syringes.   When I first came home, I was panic stricken.  What if I forget to give her the medicine?  Don’t we have enough in her daily routine, now we to have to remember to give her medicine TWICE a day?? And not just any medicine…refrigerated medicine.   This isn’t like a round of amoxicillin, she doesn’t get to stop taking it after 14 days.    Natalie's medicine sits on the top shelf of the fridge, in front of the eggs as a reminder…hey!  Don’t forget me!  And yet every time I open the fridge door and spot it, it’s like a punch to the gut.  But I know it will all be ok.  Natalie is a fighter!  She’s my tough, rough and tumble child.  When she takes a spill that would make most kids cry, she gets up, brushes off and goes about her business.  Oh, and the medicine must be awfully tasty because she reminds me at nap time if I’ve forgotten to give it to her.  She takes her index finger and points at her tongue!  So much for this mommy’s worry that she wouldn’t remember to give her child an important medicine…the three year old has it covered <3

  Thanks for reading!    Oh and here's a few pics of her get up for the sleep study!




YES!   She was expected to sleep like that!!

Tuesday, July 9, 2013

Impromptu Date Night with a side of Speech Therapy

Two Friday's ago during Natalie's speech therapy session, I approached the topic of weaning Natalie off of straw sippy cups and inquired how I might go about introducing a regular cup for her to drink from.  Natalie's rockin' speech therapist was all over it!  She darted out of the room with insane enthusiasm and returned with at least 10 varieties of liquid holding apparatuses; dixie cups, nosey cups, medicine cups, tumblers and tupperware.  Sixty minutes later, Natalie and I walked out of her session with a game plan devised by her SLP & me.  The following night Ben & I had an impromptu date night with Natalie in tow.  



























                                                                         
 After an intimate dinner on Main, 
we strolled over to our local Starbucks (sidenote: I'm so in love with Starbucks, I've attempted to get my mom & sister to work there...just so I could have free drinks!  Both attempts were an epic fail.  Plan B:find a handsome barista and date him on the side;-) )  While we are placing our drink orders I notice Via Refreshers on-the-go packets in a new flavor...Valencia Orange.  I quizzed Jonathan as to which flavor Refresher he would prefer "the Orange or Lime?" he said "If you remotely like orange, I recommend going with Valencia!"   SOLD!  I added it to our order.   Sweet barista Jonathan surprised us and fixed a sample of the Valencia Orange Refresher and served them in these adorably small Starbucks sampler cups.  Soooooo, naturally I had to have Natalie practice drinking from the cute cup!!   AFTER I shared some of my sample with Natalie, barista Jonathan notified me that "the Refreshers do contain caffeine!"  I promptly informed him that I would be dropping her off when they closed and she would remain in his care until she fell asleep! 





 Needless to say, I kept the cup and I make her practice with it one meal a day...with water, NOT the via Refresher! Hahaha.

Monday, July 8, 2013

Unk- Quiet, Gentle & Kind


   


 To say today was exceptionally challenging would be an understatement.  Each of us said goodbye to a portion of our heart...some more than others.  

     Raymond, Ray, Unk, Unk the Great.  Those were just a few of the names Ben's uncle acquired during his 77 years here on earth...and I can't believe it's been over 2 weeks since his passing.  Every time I pull onto the family property and behind the big house, I expect to see him outside doing some type of yard work.  It was an unexpected passing and it's jolted each and every one of us. 

   I was blown away when Unk's wife, Arlene, asked me to do a reading at his funeral.  What an honor to be able to speak at such an amazing man's end of life service.  Of everything he has accomplished, I felt out of place being the person chosen to pass along the following message:

{Go placidly amid the noise & haste & remember, what peace there may be in silence.  As far as possible without surrender be on good terms with all persons.  Speak your truth quietly & clearly; and listen to others, even the dull & ignorant; they too have their story.  Avoid loud and aggressive persons, they are vexations to the spirit.  If you compare yourself with others, you may become vain & bitter; for always there will be greater & lesser persons than yourself.  Enjoy your achievements as well as your plans.  Keep interested in your own career, however humble; it is a real possession in the changing fortunes of time.  Exercise caution in your business affairs; for the world is full of trickery.  But let this not blind you to what virtue there is; many persons strive for high ideals; and everywhere life is full of heroism. Be yourself.  Especially, do not feign affection.  Neither cynical about love; for in the face of all aridity & disenchantment it is perennial as the grass.  Take kindly the counsel of the years,  gracefully surrendering the things of youth.  Nurture strength of spirit to shield you in sudden misfortune.  But do not distress yourself with imaginings.  Many fears are born of fatigue & loneliness.  Beyond a wholesome discipline, be gentle with yourself.    You are a child of the universe, no less than the trees & the stars; you have a right to be here.  And whether or not it is clear to you, no doubt the universe is unfolding as it should.  Therefore be at peace with God, whatever you conceive Him to be, and whatever  your labors & aspirations, in the noisy confusion of life keep peace with your soul.  With all its sham, drudgery & broken dreams, it is still a beautiful world.  Be cheerful  Strive to be happy.}


       Doting husband & magnificent uncle; our very own animal whisperer.

Unk & Hannah; touring the property



Unk & Mai-Tai
Arlene & Unk

Ray, Marna & Herb, Tabitha
Ben's Uncle, Mom, Dad & sister



Wednesday, March 20, 2013

World Down Syndrome Day- Video

Hello there!  Happy World Down Syndrome Day :)   I can't believe this day is finally here!  Natalie and I have big plans and lots of fun to cram into this 21st day of March!!
  Back in October 2012 I had this brilliant idea to make Natalie a special video for her 21 month birthday; that day came & went and the video was only in the beginning stages  Then I decided that I would complete it as a gift for her 2nd birthday...yeah, that didn't happen!  At the beginning of March is when I finally had my ah-ha/lightbulb moment!  March 21st is World Down Syndrome Day; a day used to increase awareness and break down the negative barriers built up around those with Down Syndrome. Why March 21st, you ask?  Because it's 3. 21 and those with DS have an extra copy of their 21st chromosome.  To honor Natalie on this very special day, I made her an extraordinary video and there simply could not be a better day to launch it!!

I dedicate this video to my delightful daughter, Natalie!!  
   

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Mobile version.....

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Tuesday, February 26, 2013

Spread the word...


  What. A. Day.  Simply amazing.  I’m on cloud 9.  My heart is bursting at the seams. 
      Natalie and I set out first thing this morning, headed to A.I. for Natalie’s back-to-back OT & PT sessions.  You see, she missed her OT session yesterday because her mommy allowed her to play hooky.  Natalie had an opportunity to drive her Mater car around the gym at the ELC because the Go Baby Go! project was gathering for the filming of a segment set to air on WHYY.  Believe me, I pondered it all flippin’ weekend.  Himming and hawing…weighing the pros and cons as if it were a life or death decision.  It was an opportunity for my daughter to potentially be spotted on a local broadcast TV show.  In the end, I made the executive decision to allow her to participate and in the end, I was so glad I did.  It turned out it wasn’t just an opportunity for her to be recorded and potentially be on TV..it was something more...something I didn’t realize.  The pre-school children that attend the ELC have ‘gym class’ time slots in the morning hours.  This allowed Natalie the opportunity to interact with her peers!  She was able to get down, crawl around, and play, touch, interact and see her peers in action.  Talk about a proud mommy moment…it brightened my entire morning and eventually spilled over into my afternoon and evening.  Enough on that topic…back to where I started!  We almost never do back-to-back therapy sessions for Natalie because it has proven to be too much for her.   Today was an exception; we threw caution to the wind and ran with it.  Sure enough, my girl rocked it.  See for yourself….


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    Oh…wait!  I almost forgot.  Before therapy started, I needed some form of caffeine…off to AI's cafeteria we headed.  After we checked out, I stopped to get Natalie settled with a drink and a snack of her own.  During that time a mom approached us to talk to Natalie and inform us she has a 10 year old son with DS and shared with us her story.  I love it.  I simply adore that other families, friends and even teachers of someone with DS feel comfortable to approach Natalie and I.  It warms me to the core.

     After therapy we packed up and headed north, to Winterthur.  Natalie had a pair of jeans from Gymboree that turned out to be ‘skinny fit’.  Have you seen her shape?  It’s extremely similar to mine…and we are NOT skinny jean material!  Hahaha.  So we dropped them off to Natalie’s friend Charlotte.  Once we ended our lovely slow-paced drive around the grounds of Winterthur we headed into Greenville.  We stopped at Delaware Running Company to register & pay for an upcoming race.  As we were headed for the door, I was walking & Natlaie was crawling (at her usual fast pace), the guys yelled out “Hey!  She’s quite fast.  Do you want to get her fitted for some running shoes?!?” 

    At this point, I have exactly 30mins to get from Greenville, home and then to Hannah’s school.  Guess what.  We managed it!  It may or may not have included me cutting off one of Hannah’s classmates mother.  Oops!

    Pick up Hannah and zoom off to my grandparent’s house; Hannah spent some quality time with my Gram & poppop while Natalie and I headed off to my alma mater.  I was asked by Amy, one of my fellow Caravel graduates & mommy to Kayla (who also rocks her own set of designer genes) to join her in speaking to some students about SPREAD THE WORD TO END THE WORD.  As I headed back to the school where I gained my 4th through 12th grade education, I can’t even begin to describe the emotions that were coursing through my veins.  In my head as I drive the grounds of Caravel: ‘Oh look, the little gym, I remember watching it being built.  Hey, wow…there’s where I had my first make-out session’.  Oh the memories that came flooding back, they made me chuckle & blush.  I have to admit, it felt so weird parking in the same parking lot that I parked my junior and senior year; except this time I was unloading a stroller and a toddler from my, dare I say it, mini-van.  Walking into the 400 wing office…I honestly wanted to puke.  There was rarely a time I was in that office for pleasure!  The ambassador of the Blue-Gold High School participants walked us down the halls of 400, through the 500 wing and into the newly added 600 wing.  I was in complete shock at how the school had evolved, yet stayed the same.  By the time we reached our destination, I was in complete awe and wondered how long my mouth had been agape…and how many students saw me like that!?! I hope it wasn’t any of the ones I was about to present to!!  Hahaha!   Amy and I barely found time to locate a corner to wedge ourselves and strollers into when the bell rang.  Within a 3 min span, 40-50 students filed into the room and in an instant the vast room shrank like a damn shrink dink!  Ruth, Amy and myself dove right in.  Beth’s talk segwayed into Amy’s speech and Amy’s into mine.  You would’ve thought we spent all weekend practicing and prepping our talks & transitions; when in actuality it was all done via email and texts.  Boom!
     It was such an inspiring 45 minute gathering.  Amy and I spoke from the heart and of our own personal experiences with the R-word.  Even if we each reached only one student today, I would consider it a success.  But let's be honest here...Amy and I made a kick-ass team!  We are taking this show on the road!!!

Natalie & Kayla entertaining themselves with the dry erase board:)
Natalie driving her Mater car!