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Tuesday, December 29, 2009

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 =)

Sunday, December 27, 2009

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.   

Friday, December 11, 2009

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....

Thursday, December 10, 2009

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.

Wednesday, December 9, 2009

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.

Monday, December 7, 2009

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. 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. :-)

Wednesday, December 2, 2009


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-/


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!!