Wednesday, February 13, 2013

Embracing CHANGE!

The SWEETEST little toes...
 that
CHANGED
MY
LIFE!!!
(I can't get enough of them!!!!!)


Having a typical child
changes you.
But it's much different
than the change 
that happens when
you have a child with
a disability.

Family members and friends
who knew you before the 
birth of your child with a disability
will comment on how you have changed.

And when you think about it,
you know they are right.

How could you not change?
Your expectations change.
The vision of your 
child's future changes. 
You begin the journey
of acceptance.
You have to adjust to
your new "normal".


You start celebrating,
and I mean REALLY celebrating
milestones that people
with typical kids take for granted.  

You don't give up on your dreams
for your child but your
dreams definitely change. 

You try not to compare your child
with typical kids but sometimes
it's so in-your-face  
that it's hard not to.
And then you realize
that it has to stop.
It's not fair to your child 
and it's not fair to you.
You continue the journey
of acceptance.
Accepting your child 
just as they are.

You begin to see
the BEAUTY in them
more than ever before.
Their joy.
Their unconditional love.
Their perseverance.
Their determination.
You start to notice
the things they CAN do
instead of focusing on what
they haven't mastered yet. 
 You change.  
 
You become a research fanatic,
equipping yourself to be the
best advocate possible
for your child.
Medical terms and
educational terms you
had never heard before
the change become
everyday words to you.

When you see another parent
of a differently abled child
you feel drawn to them
when you once would have
walked right past without
even noticing them.

You use words like 
"differently abled" instead of
"special needs" or 
"mentally handicapped".
The word "retarded"
makes the hair on the
back of your neck stand up.
Even though you try not
to let it bother you.
Even though you used
the word yourself
before the change. 
Even though people have
labeled you "too sensitive"
about it.
You can't help it.
You change.

And as you become 
aware of people  
who are prejudiced
against your child 
you also become aware
of your own prejudices
 against others.  
Your own closed
 mindedness comes
to light. 
You don't want 
to stay that way.
You soften.
You change. 

Some of your old friends
accept the change.
Some don't.
They distance themselves.
Maybe they don't 
know what to say.
Maybe they just can't
handle it all.
Whatever the reason,
they are no longer around.
You make new friends.
Friends who get it.
Friends who become like family.
Friends who become your lifeline.

Me?
Yes.
I have changed.
I'm probably a
little less flippant,
a little more serious.
I find joy in the
simple things and
beauty in places I
would have never 
bothered to look
before the change. 
I avoid words like
"tolerance"
and embrace words like
"acceptance".
I am committed
to judge less and
forgive more.


This sweet girl 
changed my life.
...And I feel SO LUCKY because of just that.

Tuesday, December 25, 2012

Christmas 2012!

...So we snuck over to Morgan's Wonderland to check out the Holiday in the Park.
IT WAS AMAZING!!!!
We are SO lucky to have such a beautiful amusement park that caters to children and adults with all abilities right in our own back yard!  People have traveled from all over the world to enjoy this one-of-a-kind facility. It was like nothing we had ever imagined!!!
 
Retta slept through most of our little self guided tour. But we were taking notes for when we return!
They have a full petting zoo, jungle gyms equip with slides and swings for wheel chairs, strollers and all...sound, water and sand sensory exploration areas and addition to catch-and-release fishing, train rides, beautiful pavilions and much much more!
 
 
Retta tried out her first see-saw and enjoyed the snow (tiny bubbles) while waiting in line to see Santa.
 
 
We can envision many, many birthday parties to come at Morgan's Wonder land!
 
***
CHRISTMAS EVE 2012
at Grandma and Grandpa's!
 
 
Santa Larry made a surprised appearance towards the end of the night!
This was the third Santa's lap for Retta to sit on this holiday season. 
1) Therapy Links Santa
2) Morgan's Wonderland Santa
 3) Santa Larry.
 
 ...Each experience led to a more and more dramatic response.
 "Why must I do this again?"
"Santa?"
"I don't think so!"
(Maybe next year Santa Larry...maybe next year.)

Santa Larry and Grandpa. Best Buds!

 ***
CHRISTMAS MORNING 2012!!!

"Lets do this!"


Santa delivered LOTS of wonderful toys!

Scooters, musical instruments, baby dolls and more!


Don't forget the clothes!

';1
Opening presents is exhausting!
Relaxing with Uncle Brian.
 
 
 
Taking a ride on Deno the Dino! (Thanks to Grandma and Grandpa and Noah's Dad's Recommendation)
So much fun, we didn't want to go home!

***
CHRISTMAS EVENING 2012
Back in San Antonio at Aunt Julia's house.

 
 
 
I'm pooped!
 
 
 
But it's been a great day!

Sunday, December 16, 2012

Therapy Sleigh Creation!


Barbara, Retta's occupational therapist is full of great ideas!
She is always coming up with exercises and activities for Retta to do around the house...with pretty much what ever we have laying around the house. She had the idea of putting Retta in a box and moving her across the floor with a rope to work her core!
 
 
Szymon took the idea and created a Christmas Sleigh Ab Machine!
 
 
Complete with candy cane reigns and a piece of old carpet for extra ZOooom!!
The wilder the ride the better!
We practice "GO" ......and......."STOP!"
 
 
Retta attempted to share the sleigh with her boyfriend Burke while he was over for Christmas crafts one Saturday afternoon... but she was more interested in pulling his hair.
....Sorry Burke.
 
Naked and ready to paint!
 
While decorating the Christmas tree I came across the ornament I made with Retta's itty bitty hand on Christmas day last year. (I absolutely could. NOT. believe how small it was)! I had to something to capture her hand print again this Christmas!
 
 
This year's print was much more chubby!
We made nice plump tree branches.
And Yes! ....We wore trash bags for protection!
 
The sleigh has yet to get old!
 
 I am guilty of piling laundry up in the basket (on top of Retta) and taking her and the laundry wherever it needs to go to be folded.
 
Retta thinks it is hilarious!!!
She LOVES to dig for dryer sheets...and then fight Buzi for them!
 
 

Sunday, November 25, 2012

First Thanksgiving...with Turkey!

As always, we had SO MUCH fun Thanksgiving weekend spending time with family in Houston!
 
 
Grandma referbished the old high chair Uncle Brian and I used especially for Retta!
As you can tell, Retta thinks it's extra special!

 
 
 
 
Retta was serious about her Turkey!
 

Friday, November 16, 2012

Where did we leave off..

 
.....OK, so the one hour EEG at Methodist came back completely normal.  However, I was still not convinced we were in the clear as it did NOT appear that Retta had an episode during the recorded hour.  When we returned home, she continued to display the odd movement...and we continued to worry. After several conversations with Dr. Tardy we considered various options. We decided to wait until the morning for Dr. Tardy to finally connect with Dr. T.  
 
Dr. T sent us back to the hospital for the 24 hour EEG (which should technically be called a 40 hour EEG...because that is how long it took to get admitted, up to our room, seen by the hospitalist, orders written and the EEG tech to come up to the room and finally hook Retta up to the machine). This time the EEG was complete with a video camera...and I'm sure an auditory recorder which recorded our every conversation while we were there! Fabulous! They used superglue to hold the leads onto Retta's scalp which was very stinky and I'm sure not healthy to breath in.
 
 
11-16-12
24 hour EEG.
 
                                                 
 
Keeping a toddler's constant motion out of a 'zillion leads was the ongoing task. We rotated toys and books like crazy! Retta became bored with most of them and threw them over the railing and on to the floor. But it was all worth it because whatever the odd movements were...they were definitely caught on EEG & video! We were given a journal and small button to push everytime we noticed an episode.
 
 
That evening, Retta and I decided to split the dinner tray that was delivered to the room. We were starving...and willing to eat anything! Even hospital meatloaf!  Retta LOVED IT! Greasy mystery meat hit the spot!
 

 
The Ipad saved us! We downloaded "Christmas Song Collection" which was a hit! We made the hospital staff ring in the holidays whether they were ready or not!
 
 
Finally...asleep.
 

 
 
" Let's go home!"
 
We didn't hear from the neurologist the Sunday following our discharge. We were told, "No new is good news!" But we did receive a call that Monday morning to come in first thing Tuesday to talk with Dr. T.
 We were told that the odd episodes were absolutely NOT any form of seizure activity! Dr. T shared that it would be easiest to explain to others that the odd movement is a form of a TIC. Not something I was extremely excited to hear, by any means...but Dr. T assured us that Retta would out grow the movement.  Compared to what the movements could have indicated; we are very happy!
 
 
 
And when we made it home...Retta had a LOUD arrival in the mail!
Aunt Nicole C. sent a magical wand and princess mirror! Retta LOVES them both!
(They have made it through the wash several times and have yet to loose their magical powers!)
 
 
 
 

Wednesday, November 14, 2012

Quick Update...


 
     Many of you know, Retta has started to display some odd behavior (facial/ neck gestures) over the last week that have grown to be of great concern.  I noticed a very subtle motion last Wednesday that was nothing more than Retta slightly throwing back her head.  Szymon thought she was mimicking his laugh...but over the next few days we realized that this was not a voluntary motion.  It was during Jaja's birthday dinner that we realized something was not quite right.  
 
     Retta had her first appointment  to see the Dentist Monday morning and I was hoping she would do the little movement in the dentist's presence so I could get her opinion about it. (Retta's dentist, Dr. Cerna also has a daughter with DS!) ...And she did. I was really hoping Dr. Cerna would say, "Oh, that's nothing, my daughter does the same thing."  ...But,  Dr. Cerna suggested we call our Pedi to have it checked out.

"Hi Dr. Cerna!"

"All I want for Christmas is my two front teeth!"
 
     So, after several phone conversations with Dr. Tardy's nurse, we got an appointment with the recommended pediatric neurologist for early December.  But the more we read about the symptoms Retta's displaying - the more we wanted to be seen ASAP!!!!  So later that afternoon I made a u-turn in route to PT and drove to to see Dr. Tardy.  Szymon met me at the doctors office and while sitting in the waiting room I luckily was able to capture an episode (the worst one yet!) with my cell phone.  After showing the video to Dr. Tardy and ...of course Retta showing Dr. Tardy the movement herself.  Dr. Tardy suggested we have an EEG to rule out Epilepsy and Tardive Dyskinesia.
     So Retta and I made our way back to Methodist Hospital this morning for the EEG. (Picture above). (I hate driving into that parking garage...brings back LOTS of unpleasant memories - but I guess, I better just get use to it. I'm sure we'll be making MANY more trips there in the years to come). They let me lay down in the bed next to Retta during the procedure.  And after 35 minutes of fighting tears, flying arms and legs...Retta finally decided to give up and fall asleep. We are hoping this enabled a good 20+ minute read of Retta's brainwaves.  We are very worried.  Just when we thought we were in the clear...and Retta seems to be doing great....
     Dr. Tomasavic (the neurologist) is appointed to read the EEG. I plan to call first thing in the morning to see if & when this will be done. Everything we read on the Internet re: infantile spasms is VERY, VERY SCARY.
 
     Please keep Retta in your prayers. 


 

Wednesday, October 31, 2012

Abracadabra!

Retta has cast a spell on us....We can't help but LOVE this CUTIE!
 

The friendliest witch you'll ever meet!
 
"Get in my Belly!"
We thought we'd let Retta hand out candy...until she started throwing it!
Dad had to rescue the chocolate from the bushes!

 
"Who needs a broom stick when you have a Dad?"
 
AMAZED at what a difference a year (and a heart surgery) can make!