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.