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!!