Short update

Ciaran has had an exciting year and I apologize I have been unable to share it here.  Our computer has been acting up for about 9 months now and at this time, we just can not afford a new one.  So, we have to deal with it. 

Right now, we are sitting at Cardon's Childrens Hospital in Mesa, AZ.  Ciaran had an MRI in May that revealed she once again had a tethered cord, Chiari issues and a syrinx the entire length of her spinal cord.  You may recall that in December she had a spinal shunt placed in hopes that it would drain the syrinx....well, it didn't work. 

Earlier today she had her 6th surgery which included a spinal cord detethering and Dr. Moss was able to drain the syrinx by placing a catheter into the spinal cord all the way up and drained it as he pulled the catheter back down.  The detethering went well and Dr. Moss was able to untangle the mess of nerves at the end of the spinal cord/column.  Dr. Moss said he could see the spinal cord go up the spine by about an inch afterward.  Mommy noticed how much straighter Ciaran was already as she laid in recovery.  We will have to have another MRI to determine if Ciaran will, in fact, have to have a posterior fossa decompression.

Keep us in your thoughts and prayers.  If the decompression surgery is needed, then I hope it is done correctly and that the results are worth all the chaos we seem to have been through the past year.

Love to all our followers!! 

Ciaran's 3!!!

Today is my birthday!!  The big 3!!  We are having my party tomorrow and boy, is it going to be a BIG party....I can't wait!!

Mommy loves these kinds of pics of Me. 

Having a little tea party with Mommy. 

This pic was taken at the hospital last month.  I loved this little, square window.  Teddy bear by side....the first of many of my presents from my stay.

Sharing some tea with Mommy and Daddy

Attempting to sit up with a little help from Daddy-Poo

Cute even in a hosp gown =)

As I just woke Ciaran up, I asked her, "Who's birthday is it?"  I can't help but go back to that very fearful day 3 years ago.  More than anything I couldn't wait to see "IT" (we didn't find out the sex) but honestly, we were so afraid and scared for "IT'S" future.  And now....if she's lucky....she won't spend the entire next year in time out.  I love how she has grown and is so "normal" or typical.

Little did I know I was receiving one of God's greatest "extraordinary" gifts. 

Inspirational Video

The following video is from one of our online friends...TheGibbs.  Their blog is listed at the right as...Our Little Gibblet.  Greyson Gibb recently had the opporunity to attend The Conductive Learning Center and this video showcases some of their students.  Grey is the adorable, little guy with the superman shirt on. 

When you think you are having a bad day, watch this...it helps put life in perspective.  It takes some people every once of their being to stand up or roll over...so grab a kleenex.

The Haircut =)

The reason for the haircut...Mommy knew they were going to shave the back part of my head for the decompression surgery so she wanted it cut so that the top could be put up in a ponytail or pigtails and not hang down in my incision. It took two cuts to get it wear Mommy wanted it.

Aunt Debbe cut it the first time and boy, was it a beautiful cut.  I look so sweet. =)

Later...the same day....Mommy realized it wasn't short enough.  We happen to be at Aunt Bree's house so Mommy asked her to cut it some more.  This is the result. 

As Mommy always says, "Cuteness at its Finest!"

Happy New Year!!! Welcome 2010!!!!

Just to catch everyone up with me and my cuteness, here are some pics from the week of Christmas.  During the Christmas weekend, Mommy, Daddy and I went to the Magical Forest at Opportunity Village in Las Vegas.  Here, Daddy and me are hangin' with Santa. 

We went to our annual BoomBox Parade.  I love it because I get to sit on Daddy's lap and pretend to drive.  I have to adjust the radio to the right station so I am in sync with the parade floats.

Mommy and Daddy let me open one of my Christmas presents early because they were afraid I wouldn't be able to play with the hoop at Christmastime because they THOUGHT I was having the decompression surgery.  As most of you know, I didn't have that surgery so now I am just a stud at hoops. =)

Mommy loves these pictures.  I am deciding what I want to eat from my upside-down menu ;-).  Then I am actually eating the bean dip at El Palacio restaurant.  If you know me, you will know that I hardly EVER put food in my mouth so Mommy's glad she captured it on film.

When I was in the hospital, I got this cute, little tea set so I couldn't wait to get home to have a tea party with my pals.

Pic of Oma and me.  I love standing in my braces.  I am SOO big =)

Here is our little family at the Long House in Bullhead City.  Love the Tim-Tim Tree lights.  (That's Ciaran's way of saying Christmas tree.)

  Opening presents Christmas morning.  Love this one!!!

Cute, little, devious ANGEL!!!Grant, Daddy and I were checking out baby WesleyOpening the biggest present in the house.  An easel from Grant and Cassidy!!!Playing with Paul, Cassidy's Daddy and her Uncle after Christmas dinner. This little lady is Lilly...she is Grant & Cassidy's new doberman.  Opening MORE presents ;-)  This adorable purse was from my brothers' Mommy, Felicia.  Thank you for all my presents!!Shootin' some hoop with Daddy, Grant and Lilly.  I was trying to be brave and pet the doggy.  I like Lilly's house soo much, I spent most of the day inside it.

Cool Christmas Tree

 

The Neiman Marcus store in Dallas, TX held a contest for the most creative Christmas Tree.  The trees would be displayed in the store's front windows.  (This was actually from last year or the year before...Mommy can't remember)  The young man that created this one was a patient at the Scottish Rite Hospital in TX.  If you look closely, you will see that it is wheelchair wheels that make up the base.  The next row are crutches, the third tier are forearm crutches and the top star is made up of prosthetic hands. 

How Genius!!!  There is beauty to all of our equipment =)

Merry Chrismas Everyone!!

Merry Christmas everyone!! The Riley clan had a wonderful Christmas Eve at the Reed House, then a fantastic Christmas dinner at the Trainor House in Henderson.  I got lots, I mean LOTS of presents from Santa, my brothers, Blake and Grant, my aunties/uncles, friends, etc.  On Saturday, we went to the Magical Forest at Opportunity Village in Las Vegas.  It was spectacular.

 I am doing well and my incision is almost healed.  Mommy is not convinced this surgery fixed all of my issues.  She does think my eyes and the nystagmus is better, especially when looking straight at someone.  One will still cross when I look to the sides.  My back is still jacked to put it mildly.  I still don't sit very still; I have no balance.  Mom's not sure on the bowel problems also...we'll see. 

Thank you for your prayers.  I am sure you are dying to see pics of me, especially since we cut my hair before the surgery.  We thought I was going to have the decompression so we cut my long blonde locks and boy, am I a cutie pie with short hair.  We are still trying to find out if our CPU is salvageable.  If not, we need to buy a new tower.  Bear with us.