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.   

Going Home!!

We are going home!!  I am being discharged, then we are going back to the Ronald McDonald House and cleaning out our room. I am doing very well today.  Yesterday afternoon was actually a tough time for me.  I vomited, had a slight fever, had squirelly eyes, didn't eat from 11am until 10 pm last night.

But, I am better now and I am saying, "C Ya" to Phoenix Children's....

Doing Great!!

I am doing great.  I am very sensitive to pain meds.  Once I am off them I come around and get back to MYself.  I think if all is well, I may get to go home today or tomorrow.  The spinal shunt is very small and it is doing its job by draining my spinal cord.  Dr. Moss wants to do another MRI next month to see how my cerebellum is doing and how far it is pulled down and to see if the syrinx continues to be drained. 

I have been in more pain with this tiny surgery because it is in the thoracic region of my back.  Your thoracic vertebraes are attached to your ribs.  I can feel pain in this region, whereas last year I had surgery in my lumbar-sacral area and I have much less feeling there.  So, hopefully in our next post, Mommy will be telling you that I was sent home.

Successful surgery

Yes, it actually happened.  I am doing very well.  Dr. Moss did NOT do the decompression.  He did, however, put the shunt into my spinal cord.  He made this decision at the last minute and Daddy and Mommy felt it was best.  My recovery will be much easier.  The center is closing so I will write more in the morning.

Thank you all for your prayers.

Postponed Again

Yep...believe it.  Ciaran's surgery was postponed on Thursday.  I apologize for just now updating her page.  My home computer crashed and we are not sure what we are going to do about it. 

Anywho...surgery is now scheduled for Wednesday, December 9 @ 12:30.  At lease we won't have to leave leave at 2:30 in the morning...that's a good thing.  We won't have to leave until 6-7 :)

Mommy is absolutely going batty over these continual postponements.  She was pretty sad/mad on Friday.  It really does do a number on the old brain.  The postponement for today was because another boy had a brain tumor and they wanted to get his surgery done first this morning and it requires an 8-hour surgery.  So, in Mommy's mind, she is wondering why his was more important.  Yes, I understand the tumor part and cancer but my brain is being crushed by my skull.  What's more important???  I don't know.  What I do know is I vomit on nothing, I gag in my sleep, my body is twisted like a pretzel and I am in a lot of pain. Mommy is just frustrated.  Would Mommy want the surgeon to do an 8-hour surgery after mine...No.  Would Mommy want my surgery after he just completed an 8-hour surgery...No.  So, here we sit.  

I am still feeling all your prayers.  Thank you.  Love you all.  Stay tuned. :-)

Alrighty...

Surgery is now scheduled for Monday, Dec. 7 @ 8:30. 

Mommy is going to go pick up her hair off the floor now.  She was pulling it out because she was so aggravated. 8-/

POSTPONED :-(

Okay...yesterday at 3, Mommy received a phone call postponing my surgery.  INSURANCE (humfff) has not approved my surgery yet.  So, thank goodness we had not left yet to make the trip to Phoenix.  Talk about a blow...we were packed and ready to go.  We had our clothes, food (for the Ronald McDonald House), toys, books, and vehicles ready to go.  Daddy had his business covered for the week.  Mommy was doing pretty good, she was prepared, just not looking forward to the handing me over part, but mentally prepared for the long week ahead.  Mommy was even joking about her face being broke out from the stress and now she will have to go through that AGAIN!! 

Keep praying....we hear them and feel them.  Maybe there was a greater reason (besides the lousy insurance company) and that is the way God disguised it.  I don't know but Mommy says if it is rescheduled to close to Christmas that we will celebrate Christmas early....I'll never know the difference. ;-)

Talk to you all soon!!

Getting anxious

Hi Everybody (as Ciaran would say)....I can't believe THIS surgery is going to happen in 1 week.  I am honestly getting quite emotional about it.  I think because it is the holiday time, it is actually making it tougher.  I am in the Christmas spirit but can't envision Christmas...at least until we are back home. 

Thank you all for your well wishes and prayers.  I love you all SOO much!! 

Thank you, Betty-Memaw, for letting us come over and use your computer.

Another surgery

As most of you know, Mommy thought my spinal cord was retethering.  Well, two weeks ago we went for my MRI and Dr. Moss gave us the results.  They were worse than Mommy expected so it was a loonnnggg ride home from Phx. 

One of my conditions is called the Arnold Chiari Malformation.  My cerebellum is pulled down in to my spinal column and is compressed against my skull and upper cervical vertebraes and it is not allowing the correct flow of brain/spinal fluid.  This is causing a syrinx...a fluid filled pocket in my spinal cord.  The spinal cord should be solid.  3/4 of my cord has fluid in it.  This is causing my scoliosis, my headaches, my irritability, my lack of not wanting to eat, my gagging and coughing, my loss of balance, etc.

To alleviate all of this, I must have a decompression surgery.  This surgery will consist of removing the occipital portion of my skull and the back of the top 3 vertebraes.  Yippee.... :-{ Folks, this is a doozie of a procedure.  IF this procedure does not help to drain the syrinx, another procedure will have to be done.  Dr. Moss will have to put in a shunt in my spinal cord and it would drain into my abdomen just like my other shunt in my brain.  All of this info has to be sent to SLC Shriner's Hosp to my orthopedic doctor because they are monitoring my scoliosis. 

Surgery details :::: December 2, 2009 at 8 am at Phx Childrens Hospital.  They told Mommy I should be in there 3-5 days.  The toughest part of recovery is learning to turn my head again because they will have cut through my neck muscles.  Nurse Mary told Mommy they do sedate me for most of the time.  Mommy is happy about that because
I hate to be on my back (this is probably why) and I will have to stay ON my back.

Mommy will be able to update my site from the hospital.  She found out where the computers were...The Emily Center.
 
Please put me in your prayer groups.  Pray for me, Mommy, Daddy and Dr. Moss. 

Love to all and Happy Thanksgiving.

P. S. Our computer crashed so Mommy is going to Memaw's house to update.

Halloween 2009

On Halloween morning, we went to our Mommies and Me playgroup.  It sure was a blustery day but we still had fun at our party.  There are two photos at the end of the post that Mommy can not get moved up to the top so this posting will move around a bit.

November 1 is my cousin, Jacob's birthday.  This year his mommy, Auntie Shaunacie, went all out for his party and had a Haunted House for his birthday.  I loved eating his skull cake. My costume this year was...the itsy-bitsy black widow.  I had spiders and webs all over my chair.  My silly cousins, Marissa, Kolton and Austin went bobbing for apples....more like drowning for apples.  This is my newest cousin, Camdyn.  This little, chunky monkey is 4 months old!!  I sure love her though.  I gave her lots of hugs and kisses. Scary, Scary...

Halloween night we went to Bliss' house for a fun-filled party.  I recently met Bliss at one of my playgroups. 

Taa-daa...the black widow.  What really scared me was when my own shadow would cast in front of me....it looked like a giant spider was coming up behind me.

Mommy's nails...perfect for the occasion.

The kids were playing musical chairs....

Here, I am trying to throw the ball through the monsters mouth.  All of the parents made fun games for us to play.  Because of the temperature, we didn't play another one of the games because it included water....brrrrr

Tethered Cord Again??

Okay, so by now you are asking, "What's goin' on with Ciaran?"  Well, as many of you already know, she had a detethering last November.  It seems her spinal cord has retethered.  We are scheduled for an MRI on Nov. 9 to confirm this.  Some of the signs that Mommy saw were:  the curvature in my back is getting worse and worse.  A small dimple started forming in my scar about 3 months ago.  My issues with bowel management are completely out of the window.  Mommy can't get me to go for nothing.  It's very frustrating.  There have been changes in my bladder control also.  I am full an hour to an hour and a half after being cathed.  Crazy stuff.  Oh Yeah, there's the attitude thing.  I am sure whiny when I shouldn't be. 

When we went to our Shriner's orthopedic clinic a few weeks ago, they partially confirmed Mommy's fear.  Once they took x-rays of my back they said the curve was up to 43 degrees.  It was 35 degrees in February.  That's 1/8 of a circle.  (I don't know how my daughter can handle the pain sometimes)  The Shriner's docs are also waiting on the results of this MRI to see what step they are going to take next.  I may have to have 2 surgeries within the next couple of months.  It's very obvious there is something wrong, Mommy just wishes it would not keep happening.  Isn't there anything they can do to protect my cord so the scar tissue doesn't grab a hold of it.  We haven't spoke with the neurosurgeon yet...we will see him on Nov. 10.  Maybe he will have an answer to that question.

Ciaran CRAWLED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Mommy wasn't sure if I would ever crawl on all fours. I currently commando crawl and boy, am I fast that way. Mommy remembers another online friend of ours, Caleb, that began to crawl around the age of 3...needless to say, Mommy didn't forget that. And now that I am 3 months from my 3rd birthday, I can do it too!!! I realize the video is very dark (Sorry) but you can see me on all fours. Woo-hoo!!

Bowling!!

Yesterday, Mommy wanted to go bowling so we packed it up and cruised over to the Riverside to bowl...whatever that is. Well, I quickly learned what bowling is. I lOVE it and I am GOOD at it. I even beat Mommy =)Daddy helping me to the ramp.

Here I am giving it a big Riley push. I think I got 2 strikes yesterday. YEA!!

Blake update!!

Just a quick note to let everyone know that my brother, Blake, the college FRESHMAN, got FIRST CHAIR for bass in the UNLV symphony . He beat out other students that were in their fourth year. I told you he was a gifted musician. Mommy hopes some of that talent rubs off on me. =)

My brother, Blake =)

I wanted to introduce you to my youngest, older brother, Blake. Some of you may not know him so I wanted to share some of my highlights with him...with you.
To be quite honest, Mommy doesn't like these first pics because I was very sick in them because my shunt had malfunctioned. =( However, it was a part of my life and as you can see I am very loved.
This is Blake William Riley. He is NOW 18 years old and when I was born, everyone told me I looked like Blake. :)
The EVER cool baby in shades at Blake's baseball game.
See how much better I look...I had a shunt revision and the world is once again okay. Blake and I hangin out in our toyhauler.
Daddy and Blake were sooo mean. They gave me my first taste of lemon. Ewww.... gotta love that face. Now that's a pucker...
I love this guy!!!
Memaw with Grant and Blake.

Sleeping Beauty
Helping me figure out my new toys for my 1st Christmas.
Studdly =D
What a cutie!!

What a dork?!?!?
Blake is a gifted musician. These pics were taken after his Christmas Orchestra Concert in December of 2007. Blake plays the bass. Bernie and Blake are watching the concert that just took place.

Love this pic!!! Right after one of his baseball games...he didn't know we were coming...it was a big SURPRISE!!

Not only does Blake play the orchestra bass...he plays the electric bass. Blake is in a band called, We Build Ruins. Daddy describes them as groovy rock. The entire band is extremly talented. On this night, they were at Saxby's in Henderson.

Blake, Daddy and I at Grant's Metro Cadet graduation.

After a football game his senior year of high school. We always ate at Timber's. It was our favorite place.
Daddy and I keeping an eye on Blakey. Senior night...boy, were we proud. Not only is he an incredible musician, he is an incredible athlete, student and brother!!

This was our Dessert by Firelight night. As a family, we got together for goodies and to say a little prayer for me before my detethering surgery last November. Blake, being the ever faithful Christian, led the group with a special prayer for me and my surgeon.
Playing with me while I am on Ollie

At my birthday party, we made cards for other kids that were in the hospital. Here is Blake showcasing his.

This is Blake and a very, cute girl (can't remember her name) at a surprise birthday party for cousin, Diana, in Sunset Beach, CA.
Hangin out at the beach...

WE BUILD RUINS

Jammin'

At cousin Jeremy's wedding.

So sweet...dancing with Grandma Betty. I am the only one that calls her Memaw...I'm special...tee hee

Sly dog...
Blake at his Nevada All State Orchestra concert at the Artemis Hamm Hall at UNLV. He is the second bass player on the right.
What a beautiful bunch!!Handsome men. Like Father, Like Son

Giving Blake and the orchestra a big YEAH!! Oh my gosh...I'm wearing my glasses. How did anyone ever get a pic of this???
At the dinner after Blake's concert...I wanted to hold DonDon. He's almost as big as me but he will always be my baby =)

Blake graduated in June from Coronado High School. The ceremony was held at the Thomas and Mack Center.

The after party was at Blake's house so we all went over there for food, fun and GREAT music.

Blake's ambition is to become a dentist and he starts college on Monday, August 24 at UNLV. He has received a music scholarship so that will help fund his college career.

I am so proud of you, Blake. Good luck in college. See you soon....Sissy