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!

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!

 

 

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!

 

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!)

 

 

 

 

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. 



 

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!

 

 

 

Branford, Connecticut

"You dragged me all the way to Connecticut and all I get is a few pictures with a bunch of pumpkins!?!"

 

Our four day trip to Connecticut to attend Cousin Carolina's wedding was a whirlwind! After weeks of planning and packing - it flew by in a heartbeat! So fast, we didn't even have time to properly capture the amazing weekend.  We stayed in a 7 bedroom house that was over a hundred years old right on the water.  It had THE MOST breathtaking view of the ocean that I had ever seen!!! You could see on FOREVER!  We forgot Retta's sleep sheep; but not to worry...we opened the windows and listened to the natural music of waves rolling in and rain falling at night! I could have slept in 'till noon...but Va-cay with a baby means everyone is up at 6:00 AM!

 

There was LOTS of partying and celebrating...but I rounded up the troops and talked everyone into an orchard excursion that was taking place the town over.

Bishop's Orchard, Connecticut!

"Hey, don't I have a wedding to be at in two hours!"

"...But the pumpkins are so pretty!"

...And they taste good too!

Retta,  practicing her pageant waive!

The tree's were AMAZING in Connecticut!!! Neon green, bright orange, fuchsia, lipstick red and canary yellow (Dad's favorite Party City color)! We thought there were flowers in the trees!!!!

 

 

 

 

 

Uncle Russell, Cousin Noah and Aunt Julia joined us on the last minute pumpkin adventure!

 

Our soon to come cousin was there with us too!

 

 

"Next year I want to play in the Hay Pin, make a scarecrow and ride the donkey!"

 

....We'll capture Retta in her fancy wedding attire this holiday season!

We had too much fun to pick up the camera!