Ciaran's Page

A Voice From the Past

2011-10-24T09:32:00.000-07:00

Hello fellow bloggers. It has been quite awhile since our last posting. Our apologies.

First and foremost, thank you for keeping us in your thoughts. I did not realize how much I missed you all. Life kept happening and quickly and hasn't given me a chance to come up for air.

Ciaran is doing well, for the most part. She is having surgery #10 on Wednesday. This will be her 5th detethering.

Ciaran is in her 3rd year of preschool and will be 5 in January.

I promise to get caught up with each of you in the near future. Please keep us in your prayers this week....

Walking =)

2010-08-24T09:59:00.000-07:00

Short update

2010-06-25T22:49:00.000-07:00

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!!!

2010-01-23T06:34:00.000-08:00

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

2010-01-09T21:25:00.000-08:00

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 =)

2010-01-05T13:32:00.000-08:00

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!!!!

2010-01-01T21:11:00.000-08:00

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

2009-12-29T23:38:00.000-08:00

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!!

2009-12-27T13:28:00.000-08:00

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!!

2009-12-11T09:44:00.000-08:00

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!!

2009-12-10T11:05:00.000-08:00

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

2009-12-09T17:59:00.000-08:00

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

2009-12-07T08:02:00.000-08:00

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...

2009-12-02T10:29:00.000-08:00

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 :-(

2009-12-02T09:10:00.000-08:00

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

2009-11-24T10:43:00.000-08:00

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

2009-11-21T13:28:00.000-08:00

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

2009-11-09T11:39:00.000-08:00

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??

2009-10-19T22:27:00.000-07:00

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!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

2009-10-05T20:05:00.000-07:00

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!!

2009-08-31T08:12:00.001-07:00

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!!

2009-08-27T08:46:00.000-07:00

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 =)

2009-08-11T12:13:00.000-07:00

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

HKAFO's

2009-07-26T00:57:00.000-07:00

As most of you already know, I have KAFO braces. We realized I needed something more to stand up. Although I had these great leg braces that were helping lock my legs and help straighten my left foot, they still were not enough for me to stand up on my own. Mommy made a few calls to the Orthotist in Phx and they placed a call to Dr. D'Astous in SLC to get a script to change my braces to HKAFOs (hip-knee-ankle-foot orthosis). Once the appt was made, Mommy was dreading this appt because she knew they were going to have to cast my abdomen and that is something she knew I would HATE.

Here we are getting my back molded. What surprised Mommy was that it was plaster...she expected it to be that other material that they used on my leg casts.

Not a happy camper...I cried alot :( I hated being held down in the same position for that long of a period of time. Then they flipped me over and molded my front side.

I liked the feeling of the squishy stuff in my hands. Notice how I'm kickin it with my hands behind my head. I didn't mind being on my back as they did the casting. I think it's because I could see what they were doing.

This little video is of me giving them a big, "Yea!!" because they are almost done.

Then they outlined my body like it was a crime screen.

2 weeks later we went back to Phx to get my new brace. Daddy was able to come with us which was really cool and fun. Sam had to make a few last measurements before he could finish it.

Taa....Daaa!!!! I am standing!! I had to point out my earrings to everyone just in case they didn't see them.

I really love standing upright. With Daddy's steady hand, I felt SO tall. Mommy was amazed at how tall I was...it was a very touching moment for her. =)

I was able to go play with the kitchen at the orthotists office. A little shaky at first...

Let me see how far I can push it...Daddy's in a sprint to catch me. I'm testing the waters ;-)

I love this standing thing. I could get used to it.

This is when Ann came for my first physical therapy appt with the new brace. Now we can get down to business. Here I am trying to swivel my hips.

Giving it my all. Mmmffffff.......

Wow...is that a smile on my face during P/T??

Moving along....

Jade and DonDon came over to see me in my new brace. Boy was I happy to be taller than London finally. Giving him a little love. =)

How about a little kiss too??? No, okay then, I'll show you mister!! Here's a choke hold for ya. Boy, am I little devil sometimes.

Where are we, you ask????

2009-07-16T20:45:00.000-07:00

Hi all, we are still here and doing fabulous. For the last couple of months, we've had computer problems and it had to go into the shop for a little cleaning. Needless to say, we are back and ready to update.
This is my pretty green Easter dress. I looked lovely and I had to give you a back shot to showcase my bows and my pretty pony. =)

It got extremely cold as a storm moved in right before the Easter egg hunt so, we did a quick change.

Here I am...cute as ever at a doctor's appt.

Can you see me Mommy??? Playing with Mommy while spending the night in a motel room in Phx after a May appt.

At the baseball game!!

I never do take the easy way...who needs sidewalks?!?!?!

Awww...a cute, little punkin in her chair with a great, big field behind her. She looks so tiny...

Hmmm....Jade and DonDon are laughing and I'm not...hmmmm. But DonDon sure looks adorable in this pic.

Playing my piano...

Pure cuteness =)))

Standing in my stander....lookin like I'm gonna cry.

The ANGEL!!!

Giving my friend, Ashlee, a big hug.

Eating a scrumscious (sp?) cupcake at Shayleigh's baby shower. No, I shouldn't have been eating it (EGGS!) but they were so pretty and Mommy knew I wanted one.

In the mornings we take walks with Memaw, Grandpa and Foxy. I'll let you guess which one this is...

Cruisin...

Ethan

2009-05-12T13:02:00.000-07:00

My online friend, Ethan from Texas, has an amazing video that you all have to watch. His blog is listed on the right hand side of my page. Ethan goes to hippo therapy (horse) and he is making incredible progress. Honestly, he is a little stronger in his legs than I am but I am so proud of him, that his video brings me to tears. Go ETHAN!!

What's goin' on??

2009-05-03T00:09:00.000-07:00

Okay...when I started this posting, I thought I had saved it...not published it. But I would like to thank Jessica for being such a great team player and telling me that she had some rain......gee, I wish it would rain here. Be sure to check out Jessica's blog http://fincheradverture.blogspot.com/, she had a great posting last week about SUFFERING.

So, what's goin on here you ask...well, first of all, Mommy is having a problem downloading pics from the camera to the computer. It just happened one day...the computer said there were, "no photos" to download. So, if anyone has any ideas on how to possibly fix this...let her know. Whenever she gets it up and running again, I will post my Easter pics and other fun activities that I have been doing.

Mommy and I are going to Phoenix on Wednesday. I am being fitted (cast) for a brace that will help me stand better. It is going to have a locking mechanism at the hips similar to that of the knees. Mommy is kinda dreading this appt because I will have to be still (held down) while the cast is drying. Wish us all luck. Aunt Dawnie told Mommy yesterday that she would go with us...we'll see if she actually does.

I had an appt recently with my urologist and my urodynamics test results were wonderful...in fact, he doesn't want to see me for another year!! Last time I had this test it was in October and prior to my detethering and like everything else on my body, my bladder wasn't working very well...it was only holding about 46 cc's (or was it 64?) of urine before leaking, and now it's holding 126 cc's...YEA!!!!

Mommy thinks I look like a little school girl in these pics...so grown up. I was using the calculator as a phone to call Bbllllake and Don (London).

My 1st carnival

2009-04-18T07:33:00.000-07:00

Recently, my brother Ashton took me to my 1st carnival. Here are some pics from that exciting night.

Don and Jade...with her pretty purple highlighted hair.

Coming down the slide...I was brave in my brother's lap.

Mommy thinks I look like a doll in the last pic. A very, unhappy doll. :-(

The Yogurt

2009-04-18T07:21:00.000-07:00

Riding tall with Daddy-Pooh...nice hat DaDa

Enjoying my fruit punch flavored yogurt...actually it was pretty gross...Mommy even thought so.

Boy...do I need a haircut...

I'ts even in my hair...ewww...

Happy Birthday Oma!!

2009-04-18T06:44:00.001-07:00

Happy Birthday Oma!! In February, we went to Vegas to the Nascar race with Oma and Papa. Here are some pics from that exciting trip.
Chillin' in the drivers seat :-)

We were sooo close to the track. Mommy had never seen a racetrack before and was amazed at how steep it was.

Relaxing with a bob...ya, Mommy is trying to break me of them...keep tryin Mommy!!

Owwie!! Someone hit the wall!!
What the heck is goin' on?? This is the loudest noise I have ever heard...other than my own screaming of course.
Oma was trying to keep me distracted...
Mommy-Pooh...twinsies with the pigtails.
Needed a little hydration....and a haircut!!

Trying to make my escape....I'm outta here!!

My Mommy's Legs

2009-04-07T16:41:00.000-07:00

By looking at the pics below, there is no doubt I have my mother's legs....long!! It is really noticeable when I am in my braces. =)

Check out this video

2009-04-07T15:35:00.000-07:00

For anyone that knows me, you know that I have this kind of determination. Someday, I will make a video similar to this =)

http://vodpod.com/watch/1165857-walk-on-espn-video

Look at me

2009-04-06T08:08:00.000-07:00

These are what you think they are.
Normally, Mommy keeps the bathroom doors closed because, I'm a girl, and I love the bathroom!! Whenever I get in there, I go through all of Mommy's stuff. (And if I'm crawling, Mommy doesn't want me on the bathroom floor...ewww, gross) So, low and behold, the door was left open and I saw my opportunity to explore. Daddy came to check on me and when he came out, he said (staight-faced), "You need to go look at your daughter." The above pic was what I had done. Mommy had two bras sitting on a chair in the bathroom and I thought I needed to put them on. The blue one was a sports bra. Aren't I cute?? :-/

Spina Bifida Clinic

2009-04-01T21:49:00.001-07:00

My new favorite thing to do is sit in Daddy's chair...I feel like a big girl.

On Friday, March 27, I had my annual spina bifida clinic. Mommy, Daddy and I left at 3:30 am to arrive at St. Joseph's Hosp for a renal ultrasound at 8:00. Then we went next door to the CRS clinic for our day of appts. First we saw a pediatrician that thought I was doing wonderful!! I am growing well. I am in the 15 percentile for length and 25 percentile for weight....but what do those charts mean anyway??

Then we saw a urologist that said my kidneys looked great!!! No reflux of urine...Super Yea!! We talked with a psychologist, a child life expert and the ladies from the AZ Spina Bifida Association. Mommy wanted to have a word with Jenny, the SB clinic coordinator, to let her know that after lunch, we did NOT want to meet with the orthopedic doctor because we had moved my orthopedic care to Shriner's Hosps. Normally, there are 3 ortho docs at CRS and they rotate on Fridays for the SB clinic. Well, guess who's turn it was this week....Dr. Vu. If you don't know who he is, please see previous posts. In a nutshell, we CAN NOT stand him. So, Mommy told Jenny she did not even want to see him or have him come into our room. After lunch, we saw Linda, the physical therapist, and an O/T. Linda, the P/T, agreed with Ann, my P/T at home, that my new braces are super terrific but I still can not stand up on my own. Besides getting my left foot to stay straight, the main objective for the braces was to enable me to stand up...and I still can't. I need HKAFO's. They would start at my hips and go down...helping me to support my weight. Mommy is going to have to take steps to see what we can do about this. I also don't have my new walker yet. It is going to have forearm troughs that might help me to stand straighter.....we'll see.

When we were all done for the day, we booked it home. It was so cool to have Daddy with us for the day. Mommy was able to sit in the back with me on the way home...it was so nice to have company with me =)

Priceless...

2009-03-14T08:45:00.000-07:00

WHEELCHAIR...$5,678

STANDER/W TABLE...Donated, thank God, if not, it would have been $3,000

WALKER...this one was donated, but the one that was ordered for me was about $2,500

KAFO's...$3, 700

Special Shoes...$75.00

TRICYCLE...$300

GLASSES..$300 (Still waiting on insurance to reimburse from last Sept)

Mommy and I travelling to Phoenix (a 4-6 hour trip) 42 times over the last two years

Juggling 4 therapy appts a week (Physical, Occupational, Speech, Developmental Specialist)

4 surgeries to date from a brain surgeon...BILLIONS, I'm sure!!

The opportunity to see our baby girl Riley STAND UP...

to see her progress mentally like any other two-year old...

to see her ride a bike and feel the wind through her hair...

to have her healthy...

to HEAR her say, rather yell "MOMMY"...

to HEAR her say, "HI DADDY" everyday, nonstop, for the first 20 minutes when Daddy gets home from work...

to have her grow physically at the right height and weight for her age...even if it is on PediaSure...

to see her throw temper tantrums like any other two-year old...

to hear her SCREAM at the top of her lungs just because...

PRICELESS!!!

Gee, Mommy could get a new car if we traded in all my equipment...isn't that crazy?!?! Just kidding, Mommy doesn't want or need a new car but isn't it an interesting synopsis???

My new KAFO's & other equipment

2009-03-13T10:19:00.001-07:00

These are my new KAFO's and my new shoes. Cute, eh??? So far I like them very much. I am only wearing them for about 2 hours now. The time that I wear them increases everyday.

I have not been a happy camper when it comes to using the walker. It is not the exact type that the doctor prescribed but it is one that Ann, my P/T, had for us to use in the interim while waiting for mine. I always make it a struggle. Mommy has been showing me pictures and videos of one of our on-line friends, Ethan, so I can see how he does it. She's hoping I will catch the drift...we'll see.

Ann is trying to help me move along the sofa.

This is my stander...it does just that...stands me up. Laura, from the Parent Network donated it to us. This is a REALLY nice stander.

Daddy and me reading some books. I love my Daddy!!

Pic of me not too happy to be in the stander. This pic must have been from the beginning of the stander days because I ask to be in it now. I love being tall.

The cool table that came with the stander also is perfect for me in my wheelchair. Here I am checking out the latest toy catalog...as if I don't already have everything in it. hehe :)

Phx results

2009-03-13T08:14:00.000-07:00

Boy, did Mommy and I have a busy week. We were exhausted, needless to say. We ended up leaving BHC at 2:30 Wednesday morning because I had to be at St Joseph's Hosp at 7:15 for a CT scan. Well, because we had left so early, I slept most of the way and we didn't have to stop which made us arrive an hour early...yippee, an hour early to a hosp...so much to do at 6:30am. :-/

This first pic is of me waiting for my CT scan...can you see the excitement on my face?? Gotta love the bedhead also :)

My second appt was with audiology. I needed a hearing test and we have been trying for about 9 months to get one done. Julie, the doc at CRS was wonderful. She did several tests and I was so good for her that she was able to complete them all. My hearing is fine...Yea!!

Thursday was a tough day...really tough day. Mommy and I were on the road for about 12 hours all together.

My first appt was with Katherine in neurology. We told her about all the impressives things I am doing now like counting to 20 and doing my ABC's. We had a big discussion about me and my eating habits, which as many of you know, are pretty much nothing. ;-) She told Mommy not to worry too much about that now because I am only two afterall, and she said to see how things go for another 6 months and then at that time we might do a modified swallow test with a speech therapist to see if I have any throat issues. The CT scan from the day before is going to help to see if my Chiari malformation (look it up) is playing a part in my not eating. Dr. Moss will tell me the results tomorrow on that. The thing that confuses Mommy so much is that I ask for food and tell her that I want to eat but once I have food I don't eat it. I will however eat Play-doh and my plastic food from my kitchen...hmmmm...

Katherine also told Mommy that sometimes kids don't eat until they are 5 or 6. She also said that Mommy may have to adjust to my world of eating instead of me adjusting to theirs. Another...hmmmm....

Here I am at the CRS waiting room and coloring pretty pictures. I am the cutest in my little RN scrubs.

After neurology, we had wheelchair clinic because Mommy thought I needed my seat adjusted. I have grown so much since I got it that Mommy had to tweek my backrest just so I could sit up. After much deliberation, the therapists at WC clinic decided I did not need an adjustment because I was sitting at the back of the seat and the only option was to get a bigger seat. They were afraid I would not be able to reach the wheels with a seat that was 2" wider and longer.

Next, we had to go to the Orthotics Specialists to pick up my KAFO's. Mommy has been waiting anxiously for this day. Once they put the braces on me, Sam, my orthotist, had to make some adustments to the braces. He wanted to make sure I wasn't being pinched in some areas and wanted to make sure my knee was bending properly. Then, Sam had to take the braces over to the lab and make his changes. He said he would be gone 15-20 minutes...well, 40 minutes later he came back. Mind you, we have been at the othotic office for 2 hours by now. I was just a wee bit restless...teehee...Mommy was pulling her hair out. But all in all the braces are done and fit properly.

THEN...we had to go back to the WC clinic to make sure I still fit in the seat with the braces on. All was well and I fit. Whew....what a day.

Friday morning we had an appt with neurosurgey. Dr. Moss said my CT scan was good and he didn't think my Chiari or syrinx was causing me any problems. As always, the best part of going to the neurosurgery clinic is seeing Ms. Mary. We love her!!

Here I am waiting to get a shunt series, which is x-rays of my shunt and the pathway of the drainage tube. I think they took 3 pictures.

I tried on Mommy's shades while we were on potty break. I am so stylish. :)

My last appt was with Dr. Peters in Opthamology. It is quite a hike over to her office but we love her office so it is worth the trip. Mommy told her I wasn't wearing my glasses (tattle-tale) and Dr. Peters said to just keep trying.

That concludes my doctor visits. Several of my doctors don't want to see me for 6 months...YEA!!! Other than my spina bifida clinic on March 27, I don't think Mommy and I will be going back to Phx until the end of summer!!!

Off to Phx again

2009-03-03T06:51:00.001-08:00

GOT MILK??

I am so sorry that I am behind on my updates, but Mommy and I are leaving today to go to Phoenix. I have 7 appts this week. It really isn't too bad because we haven't been in 2 months. My list of appts are:
1)CT scan
2)Audiology-I need a hearing test
3)Neurology
4)Wheelchair clinic
5)PICK UP MY KAFO BRACES!! YEA!!
6)Neurosurgery
7)Eye doctor

I promise to update everyone with my past events as soon as I get back.

Uncle Jeremy

2009-02-22T22:54:00.000-08:00

My Uncle Jeremy was in Las Vegas for a football coaching clinic so we stopped on our way back from SLC to visit with him. I had not seen him since Mommy and me made the trip to Reno in June.Yo...are you lookin' at me???

Update on my back

2009-02-22T22:23:00.000-08:00

Okay, most of you know I have scoliosis which was caused from the tethered cord. Although I had the detethering surgery to free my spinal cord, the scoliosis did not go away. Mommy doesn't think my back has gotten worse since the surgery but it certainly got worse since the last x-ray in July when my curves were 28 & 29 degrees. Dr. D'Astous took x-rays while we were in SLC and my curves are now 35 degrees. Yikes!!! The doctor doesn't want to do anything at this time because I am so limber and strong in my trunk area that bracing my back would actually make it weaker. He would like to monitor my spine and see me again in 6 months. So let's all pray that it doesn't get worse...OKAY?!?!?!

The statue and my 1st snow

2009-02-20T15:12:00.000-08:00

Me, Mommy and the Shriner statue...we were trying to duplicate the pose...we almost got it...

Mommy kept telling me I was going to see snow for the first time and boy, was she right...there was lots of it.

Will it hurt me if I touch it??? Maybe I will just pick at it...hmmm
London wasn't too sure of it either.

Video of me standing

2009-02-20T13:46:00.000-08:00

This is a video of me standing on my own. I have the neoprene braces on and they work well enough to hold me up. There are more videos, but because Mommy was working with me, Jade videotaped them and they are on her camera. As soon as we get them uploaded, I will post them. Check me out!! Look how tall I am!!

Our day in SLC at Shriner's Hosp/Ronald McDonald House

2009-02-20T12:48:00.000-08:00

To start the day, London and I took a bath...we were dirty, little monkeys. This was my first time in a bath with someone else and boy, was it fun. After we were all ready, we left the Ronald McDonald House and went the few blocks to the Shriner's Hospital...it took Mommy 15 minutes to warm up the car so we could get in it to drive 5 minutes...hmmm...I wanted to try on Jade's beads. I started the day with pigtails....and ended up with braids, my first ones. After they took x-rays of my back and legs, we had a few minutes to kill so I played with this cool, touchy board on the wall.

All went better than expected. Usually Mommy has to be ready to do battle with the orthopedic docs, but not this day. They were more than willing to help me out. Mommy wanted me to leave with at least AFO's [(Ankle-Foot-Orthotic)(see previous post about left foot contortion)], but instead, we left with a script for KAFO's (Knee-Ankle-Foot-Orthotic) and Dr. D-Astous also thought I should have a walker. I am so excited to get my new equipment. For the interim, they gave me some neoprene knee stabilizers for an adult and we will go to Phoenix to get the actual braces. I went to Physical Therapy and met Keri and Mark. While I was with them, I got to stand up for the first time. It was COOL!!

Trip to SLC

2009-02-20T10:37:00.001-08:00

I know everyone has been dying to find out how my trip went so I apologize for my delay in postings.

On Tuesday morning at 5 am...yes, I said, 5 am...Mommy, Jade, Dun (London), and myself set out on our trip to the Great, White Northern part of Utah. Jade kept us fed and entertained while Mommy drove. Here are a few pics after eating Cheetohs. Messy....

This is a pic of the back of the van...Mommy thought it was kinda funny how packed the car was for a 2-night stay. But, if you figure you've got 2 babies, that means 2 cribs, 2 strollers, 1 wheelchair and lots of warm, bulky clothes for the Great, white, northern part of Utah.

Absolutely Gorgeous!!

Mommy had to have this pic...it was a MaryKay pink Cadillac....also, gorgeous =)

When we arrived at the Ronald McDonald House, Mommy opened her door to this....enough said.

Off to SLC

2009-02-02T07:21:00.000-08:00

Okay everyone...tomorrow we are leaving for the SLC Shriner's Hosp. Mommy will try to take lots of pics and we will post them when we get home. We are driving so pray for us that we have a safe journey.

More cards

2009-01-29T12:24:00.000-08:00

These are some more cards that everyone made for the kids in the burn units at the Shriner's Hospitals. I made the purple one with the shooting stars on the bottom picture.

Go Cardinals!! Go Cardinals!!!

2009-01-29T12:20:00.001-08:00

Go Big Red!!! Good luck Cardinals!!

My new trike

2009-01-29T11:46:00.000-08:00

Okay, as most of you know, Mommy hasn't figured out that she can't hold the camera sideways so here you have another video where you need to crank your neck to the right. Sorry...some people never learn.

My birthday party!! I'm 2 now!!

2009-01-26T14:35:00.000-08:00

As most of you already know, my birthday was January 23. We had an awesome party at my house on Saturday, the 24th and most of my family and friends were there. We had the party outside and we could not have asked for a more beautiful day. Here is a pic of me before the party with my "Birthday Girl" tiara on.

Mommy decorated my wheelchair for the special occasion.

Elmo and all of the cupcakes that Jade made...Thank you, Jade!!

Since so many people were coming to my party, we decided to open their gift as they arrived...it worked out wonderfully. Auntie Norie and Oma helped me open my presents.
I loved this card from Aunt Linda, it sang to me.

I got a lot of stuff for my hair, brushes, barrettes and ponytail holders. Just what I asked for :)

Oma standing guard over the present table.

This is my Aunt Sharon and cousin, Domanique, from Las Vegas. Thank you for making the drive down.

Auntie Norie helping me open my presents and look at the CUTE gift basket that Cassidy and Grant made me.

This is Mommy's friend, Kristen, that she hasn't seen in years. She brought her cutie pie little boy, Dravin, for the festivities. Seated at the table are Ashton, April and Uncle Dave-O.

More presents!!! Auntie Bree is giving me a HUGE hug as Marissa and Coltan look on.

I felt like being a big girl and wanted to sit at the table with Cassidy.

This is Debbie Kort...she's my photographer. Yes, my own personal photographer...I'm so spoiled. Most of you have my portraits and she is the one that took them. She brought me barrettes and some magnetic letters that tell me the sound they make.

Aunt Becky holding Kayden, Cory and Aunt Linda holding Paige.

This is Scarlett and David checking out Elmo.

This is Katri Rajaniemi...you might remember her from her birthday party a few months ago where there was a live Elmo.

Auntie Valerie helping the kids make their cards. What a trooper she was!! One of the things we did at my party was make cards for the kids that are in the Shriner's burn unit. Since the Shriner's are helping me out, we wanted to give back by sending some love to these poor kids who are recovering.
Zachary, Austin and Seth
My cute, red headed brother, Blake and his sports themed card.

Cousin, Zachary and his jungle themed card
We played pin-the-nose on Elmo. Katelynn won...way to go Katelynn!!
This was the best present ever....check out my new BIKE!!

I was very proud of myself here. I gotta give myself a hand. tee-hee

Poor LondonRoma, he was sick and spent most of the party inside resting.

My time with Oma

2009-01-26T14:24:00.000-08:00

When my Oma was here, I made her some cookies in my little kitchen. Here I am showing Oma the sign for cookie...at least my interpretation of it.

Here's the three of us after the party, boy, were we pooped girls.

Last minute party supplies

2009-01-26T14:19:00.001-08:00

Mommy, Jade, London and I all went to Vegas on Wednesday to meet Oma and to get some last minute party supplies. Our first stop was Party City...here are the cutest kids you know. :-) Mommy loved this little crown but she said for $10...NO WAY!!

Haircut

2009-01-26T14:07:00.000-08:00

Mommy realized I had better get a haircut before my party so Aunt Debbie stepped up and got me an appt at a moments notice.

My adorable cousin, Olivia

All done!! Now you can see my beautiful blue eyes!!

My Papa stopped by

2009-01-26T14:02:00.000-08:00

I forgot to put this update on last week. We were so busy planning my birthday party that I didn't mention my Papa stopped by on his way through town. We grabbed a bite to eat at IHOP and while we waited for our food, Papa and I colored a picture. It was a short visit but it was nice to see him.

Counting sparkly things

2009-01-20T06:45:00.000-08:00

Birthday Party...this Saturday

2009-01-18T22:49:00.001-08:00

My second birthday party is this weekend, Jan. 24 @11 am. If you have not RSVP'd, please do so asap. It's gonna be a good one.

London's First Birthday

2009-01-16T07:53:00.000-08:00

January 13 was my nephew's first brthday. London looked cute as can be!!! There was a party for him at Peter Piper Pizza. It was my first time there and boy, did I have fun. Aunt Cindy couldn't get enough of him.

Ashton and his adorable sissy with her pretty pink balloon.
I loved the baby in the window.

London...not sure how to get the Prince crown on.
My cuz, Marissa thought I needed a little help. Aren't we cute??
Eatin' his first cake.

Ashton says, "Get in there".
I've got a little green around my mouth after a little taste.
I loved Skeeball...I was pretty good too!!
Crazy table?!?!?
Lisa was being silly with the balloons...she played with me alot...it was good to see her. Lisa is Jade's Mommy.

Opening his gifts. Cousins Seth, Zachary and Austin in the backgrouond.

My Left Foot

2009-01-16T07:07:00.000-08:00

Okay, here's the deal. As most of you know, Mommy has been very unhappy with the orthopedic care I have been receiving. I have seen two docs in Phx but both thought I didn't need braces yet. (See July postings) Mommy, and most of my therapists, all agree that I should have had some type of bracing months ago. My left foot that has always turned up and out, but remained flexible, is now stiff in the ankle joint. This makes it very difficult for Mommy to do my stretches and range of motion excercises.

Instead of going to Phx again and being disappointed, (I don't think Mommy can handle that again) I have been approved to go to the Shriner's Children Hospital in Salt Lake City, UT. The SLC hosp specializes in orthopedic care and the doctor I am going to see is an Infantile Scoliosis Specialist. Although I had my detethering in Nov. and my spinal cord is free, my spine is still quite curved so Mommy is so thankful for this scoliosis specialist.

The Shriner's Hospitals are completely free!!! Completely!!! They are even going to pay for our transportation there. Once we are there, we are going to stay at the Ronald McDonald House. So, the next time you see a man with a funny, maroon hat (phez) on, tell them, "Thank you" and that you know someone special that they have helped. (Mommy's crying right now)

Here I am at the local Shrine club. Mommy, Daddy and I went there on Monday for tacos and to talk to Clint Stevens...he's the local President of the Shriner's Club. It was my first experience with a pool table...where did the ball go???? oh, wait, there it is!!

Baby Doll

2009-01-16T06:55:00.000-08:00

When Jenni was here last week, we role-played with a baby doll...here I am giving it some medicine...something I am very familiar with. Roxy should love my precise technique.

This is Jenni and we were playing with the baby...check out this adorable video.

Feeding myself!!

2009-01-12T08:56:00.000-08:00

I'm such a big girl now. I love mac n' cheese...what child doesn't?!?!? Check out my skills with the fork :-D

New Year's Eve

2009-01-12T08:05:00.000-08:00

We decided to go over to Aunt Debbie/Uncle Duane's house for New Year's Eve. They weren't doing anything and neither were we. They were kind enough to make us some GREAT burgers for dinner.

I had a little fun with some glow sticks.

Checkin' out Aunt Debbie's drawers...hmmm

Playing in the tunnel...Aunt Debbie was chasing me...hehe

Since I did not see the Reeds for Christmas, I got to open another present...it was a cool Winnie the Pooh phone...

This was my reaction. :-\ Actually I like it now...I found the Itsy-Bitsy Spider button and now the world is good.

Another Christmas picture

2009-01-03T14:45:00.000-08:00

I forgot to add this adorable picture of me at Christmas dinner. I am pointing to my adorable, little cousin, Kayden.

Some random pics of me

2009-01-01T22:55:00.000-08:00

Some of these pics were so cute, I couldn't pass up the opportunity to put them on my blog. In this first pic, I am eating a plastic fry...I won't eat a real fry, but boy, hand me one of these plastic suckers and I turn to mush. Hmmm.....???

Sprocket hitchin' a ride on the Sit'N Spin.

Reading like a good little girl...I LOVE BOOKS!!
Ever so cute in Daddy's Farmer Jon hat from Halloween 2007.

Mommy loves this profile shot of me...she loves the silhouette behind me and she loves my little button nose.

Mommy thinks I look just like her in this pic....

Christmas!!!

2009-01-01T15:09:00.000-08:00

Merry Christmas Everyone!!! I enjoyed Christmas a lot more this year....afterall, I am almost two. I wasn't to happy about being woke up by London playing with my toys, but I soon got over that when we started to open presents. Ashton, Jade and London joined us on Christmas morning...it was so fun!!

London loved the toys he got from G-Ma and Grandpa...we both played with them.

I even rode his quad that Santa brought him...with a little help from Jade I was able to scoot along.
I am generally an easy child to please (ya, right) but on Christmas morning, I was completely thrilled with the wrapping paper. Santa brought London a drum, but I loved it so much that Mommy said she would get me one for my birthday next month.

I got a new kitchen from Santa. This one is perfect for me...I can play with the bottom half when I am on the floor or I can play with the top half while seated in my wheelchair. Cool, huh???
Ashton & Jade got me pots & pans, apron, hat, potholders and learning fruit for my kitchen. London was trying on the chef's hat...it's too big kid...maybe next year.

On Friday morning, my other brothers came down from Henderson and Cassidy came with them. Daddy was working so we all just chilled awile and I tried my best to entertain everyone.

I got so much cool stuff from my brothers and Cassidy...food for my kitchen, Play-doh set, books, slippers and towels. So much for the spoiled, little one.

Ann, my physical therapist is going to be thrilled with my next present...it works my abs, back and arms. Felicia, my brothers' Mommy, got me this Sit' N Spin. I had to try it out right away....Check me out!!

Blake and I were playing on Friday night after G & C left to go back to Vegas. I love my Ollie chair that my Papa got me for my birthday last year.

This Little People barn makes animal sounds when you open all the different doors. My Aunt Cindy and Uncle Chuck got it for me.

My First Christmas Cookies

2008-12-27T22:22:00.000-08:00

Mommy and I made some cookies...it was my first time and I felt the need to taste everything...probably a typical kid thing to do.

Taa-daa....cute for my first attempt.

Boombox Parade

2008-12-27T21:33:00.001-08:00

Bullhead City has a Christmas Boombox parade. This year it was cold so we sat in the van. I got to sit on Daddy's lap during the parade...here I am teaching him how to hold the steering wheel with two (not one) hands.

Here they come...the high school band and the fire engines!!
Pretty float

Time to put the beanie on...although we were in the van, the windows were down.

Little One started to putter out....

Parent Network Christmas Party

2008-12-27T20:40:00.000-08:00

On Saturday, December 13, there was a Parent Network Christmas Party and my brother and his family with went us for the festivities. First, we went to Rotary Park for a community Christmas party but London and I were too small to really appreciate what was going on...maybe we will enjoy it more next year.

Gotta have my bink!!London's scrunchy face!!
After the park, we went to the Knight of Columbus Hall where the party was....here Daddy and I are playing a ball tossing game.

I won a medal for my efforts...YEA!!
I did not want to see Santa...check out the terrified look on my face. Mommy decorated my chair with garland that I picked out and I had a huge jingle bell on the back.
I may not have wanted to see Santa...but I certainly wanted what he had for me. London, Jade and Ashton....cute family.

Mommy and her princess....My first candy cane.

I can count!!! Sort of...

2008-12-12T11:37:00.001-08:00

I am learning to count...listen closely

The Hudnall Wedding

2008-12-09T14:17:00.000-08:00

On Saturday, Nov. 29, we went to Vegas for JR Hudnall's wedding to Alicia. JR is Sherry's son...Sherry is Mommy's best friend...they used to work together at the bank. Here I am with Lilly, minding my own business, and here comes Mommy again with the camera...geez...

This is Sherry...this is the first time we met...showing her my new ride.

Mommy and Sherry

The wedding party. The groom is JR and the bridesmaid on the far right is his sister, Courtney.

Mommy wanted a picture with me and I didn't want any part of it....hmmpff....

Daddy and I strolling on the dance floor.

Cruisin...exploring....

Ashton and London

Mommy and Courtney...Mommy met Courtney when she was 3.

Daddy-poo and his princess.

Cute family...Ashton, Jade and a very, unhappy LondonRoma.

Dancing babies

Courtney dancing with me.

Handsome Groom, JR

One pooped, little girl on the drive home.

Happy Thanksgiving!!

2008-12-06T21:27:00.000-08:00

On Thanksgiving, our family had Thanksgiving at Uncle Duane's/Aunt Debbie's house. Here I am having the turkey of my choice in a bottle form with my Aunt Becky.

Kaydence and Candace
Playing with my ipod.

Me, Kaydence, Candace, Ashlynn and Dillon all playing with the dollhouse.

Giving Memaw a kiss.

Me and my cute cousin, Paige.

My new wheels!!

2008-11-26T06:34:00.000-08:00

While Mommy and I were waiting to get my fancy, red wheels, I made some last minute calls with my phones to let everyone know we were officially picking up my chair.

I got my new ride on Monday...it is so cool. After Mommy loaded the chair in the car, she had to snap this pic just to show how little it is.

We decided to go shopping and when I passed in front of a mirror, I stopped and yelled, "Baby!"...not realizing it was me at first.

At the end of the second video, notice how close Mommy lets me get to a POLE...silly Mommy:-/

You wonder why healthcare is so costly...maybe it's because they charge $5,789.00 for a toddler's wheelchair...Geez 8-{

Blake's Honors Orchestra Recital

2008-11-26T06:33:00.000-08:00

I know I am a little behind on postings...but here goes. Memaw, Mommy and I went to Vegas on Saturday, November 22 to watch my adorable brother, Blake, play bass in the Honors Orchestra Concert at the Artemus Ham Hall at the UNLV campus. We were so impressed. Blake played wonderful as usual. ;-) He is the second bass from the right looking at the above pic.After the concert, we went to dinner with Blake and his girlfriend, Andrea. I was a ham as usual...feeling great after my spinal cord surgery 2 weeks before.

Enough already Mom!!! How many more pictures can you take of me????

News Flash

2008-11-18T16:20:00.000-08:00

Mommy and I are picking up my wheelchair on Monday, November 24, 2008 @ 12:30 AZ time!!!! I am so excited, I can't stand it!! Mommy took a couple of short videos of me at my wheelchair clinic back in September so take a look at those. That was my very first time in a chair. What can I say...when you got...you got it!!

Miss Priss

2008-11-17T16:24:00.000-08:00

Check out the new scrubs my Papa and Oma bought me from the gift shop. Look at me, this pic was taken on Saturday...you would never have known I had back surgery on Wednesday. Memaw, Aunt Debbie, Aunt Nori, Uncle Dave-O, Ashton, Jade and London all came to see me on Saturday.

Back of scrubs...too cute!!

Mommy took my bandages off Sunday night. This incision is longer than the first but we all think when it is healed it will look better than the first one. Check it out, my cute little heart birthmark is still there.

Discharged

2008-11-17T16:18:00.000-08:00

I was finally discharged on Friday around 3 pm. We went back to the Ronald McDonald House and loaded up the car. Oma and I took a picture next to Ronald. His place is soo cool!! Thanks, Ronald McDonald House!! We finally arrived back in BHC around 9...I slept really good in my own bed...about 12 hours or so.

Thurs night/Friday

2008-11-17T16:11:00.000-08:00

Oma stayed with me in the hospital last night. I slept all night for her.

Making my morning calls....I'm back on track :)
A cute, fuzzy pic of me on Friday morning.

Daddy gave me some yogurt...my second favortie food in the world next to ice cream :P Yummie!!

Better times at the hospital

2008-11-17T14:55:00.000-08:00

This is Lily Angel...my Papa bought her for me. When I squeeze her belly she recites a prayer.

The nurse brought me some ponytail holders so Mommy put my hair up. Can you believe this is me shortly after the morphine wore off...Amazing!! Oma's on the phone...probably with Papa.

Chillin' with Lily

Oma and Papa bought me the giant Elmo balloon and the Winnie and Piglet balloons.

Daddy knows who his true friends are...hehehe...
Daddy and I started to tucker out so we napped. Daddy had stayed with me at the hospital Wednesday night. Since I was whacked out on the morphine, I was up quite often throughout the night.

Morphine

2008-11-17T14:12:00.000-08:00

We discovered I can not tolerate morphine. It took about 24 hours to realize that, so in the meantime, my world sucked. As you can see in the first pic, I am holding on to the crib...I wouldn't let go. My world was spinning, I was so nauseous that they had to give me antinausea medicine. I could not sleep, my eyes would not focus and would roll so far back in my head that sometimes no one could see the iris only the white part. We kept telling the nurses but everyone kind of blew it off.

On Thursday when Dr. Moss' asst, Mary, came in to check me, she noticed right away that there was something wrong and said she would go get the doc. When Dr. Moss got there, my eyes were fine (of course!) although they had been scrambling for the last 24 hours. He asked if anyone had held me yet and the answer was no. Mommy was so happy to finally hold me. So Mommy and Oma held me for a couple of hours. It made me feel a lot better. The hospital chaplain, Charlie, came in to talk with us and said a wonderful prayer for my recovery.
Still feeling puny...

Oma's turn to comfort me.
Holding on for dear life as my world spins.
Then....BAM-MO!! I was better. 30 minutes after the chaplain and Kerry had come to my room and prayed for me, I snapped out of it.
Goodness, here I am sitting up...just like that. Crazy stuff...Mary came back in the room a while later and said she realized it was the morphine. Thank GOD he put that wisdom in Mary's head to discover that fact...I know it was those hands that were put on me during prayer a few minutes before that helped me get out of my funk. Funny thing is, I've had morphine after all of my other surgeries but I think I was given more doses over a longer period of time...this time; whereas with the other surgeries, Mommy recalls me getting only one or two doses as opposed to the 24 hour cycle I was given.

Titus and his family

2008-11-17T14:03:00.000-08:00

This is Titus. Most of you will remember from a few months ago that Mommy and I went to Kingman to play with Titus and Trevor. Well, Titus just happened to have doctor appts this week in Phx and his family was also staying at the Ronald McDonald House. While I was in hospital recovering, Mommy, Daddy and Oma had dinner with Titus, his mommy, Kerry and his daddy, Scott. Titus looks alot like my nephew London in the top picture.

On Friday, while Titus was having an MRI, his mommy, Kerry, came to see me and the family. Before she left, she said a beautiful prayer for all of us.

Post-Op

2008-11-17T13:45:00.000-08:00

Daddy getting his first look at me...he was crying...so was Mommy

Elmo was the first one to my bedside....I love him.
My back with bandage.

The surgery went very well. The doctor actually said it went smooth...although it was severe, he was able to release the cord and nerves from the scar tissue. During the pre-op consultation, Dr. Moss said the chance of cutting the leg nerves was only about 1%...he has only had to do it 3 or 4 times. So, as most of you know already, he didn't have to do that with me...YEA!!!

Arrival at hospital and waiting

2008-11-16T21:19:00.000-08:00

We had to leave sooo early to get to Phoenix by 6:45...but look at me...bright eyed and bushy-tailed. Here I am in the admitting waiting area.

Oma and I waiting for my MRI and x-rays
I had to make a few last minute calls...

Me...getting a little antsy and wondering what is going on.
Daddy-Poo lovin' on me.
Mommy had to see my heart-shaped birthmark one last time in case it changed.

Elmo in the waiting room once they took me into surgery...he was calling everyone and raising Mommy's cellphone bill. Geez...

Last post until surgery

2008-11-10T20:52:00.001-08:00

This is going to be my last post until my surgery on Wednesday. This is the plan...Mommy and I are going to Vegas to get Oma tomorrow (Tuesday)...it was much cheaper to fly into Vegas rather than Phx. Then we are going to Toys R' Us...don't know why we would go there...as you can see from the above pictures, I don't need anything. We are going to bed very early and leaving BHC at 2 am. I have to be at Phoenix Childrens Hospital at 6:45 to check-in for a 7:30 brain MRI then some x-rays called a shunt series. My surgery is scheduled for 9:30 am. Mommy and Daddy will let everyone know how I am doing as soon as possible. Mommy is going to update my website for me while I am recuperating...so check it often. Mommy, Daddy and Oma are staying at the Ronald McDonald House (a wonderful charity!!)

Save a special prayer for me...say one for Dr. Moss-the neurosurgeon, and his staff...say one for Mommy and Daddy, they are so anxious they are starting to drive me CRAZY!! I LOVE YOU ALL...talk to you next week.

Dessert by Firelight

2008-11-10T14:05:00.000-08:00

On Sunday, November 9, we had a family gathering down at Don Sullivan Park near the Colorado River. Everyone was supposed to bring a dessert and we had coffee and hot chocolate to sit and eat/drink around the campfire. Towards the end of the evening, my brother, Blake, and Aunt Cindy said special prayers for me and my upcoming surgery. Blake prayed for me, my doctor, Mommy, Daddy, and the rest of the immediate family. He also said a prayer for Aunt Becky, cousins Christopher and Cory(because their Daddy died this week), and for Cory and April's newborn baby, Kayden, that is in the hospital in Vegas. Aunt Cindy's prayer included St. Jude's prayer for the sick. This first pic is of Daddy and Blake lighting the fire.

Elmo and I are going for a wagon ride...Yippee!!

My cousin, Jake, pulling me along....

Auntie Shaunacie and Mommy.

Olivia and I chillin' in the wagon.

Ashton holding both us babies.

Cousin Kyle, Auntie Debbie, cousins, Kevin and Valerie

Auntie Linda (all the way from Lake Havasu!!) and cousin Breanna.

Ashton, London, Daddy and Blakey

Auntie Bree with Olivia, LondonRoma, Ashton and cuteness....that's me!!

All the little cousins at the shindig...

Aunties...Becky, Debbie and Cindy

Cousins, Cory and April

Cousin Kevin, Uncle Bob (from Havasu) and Kyle.

My cute brother, Blakey!! All the way from Henderson.

The end of the evening with Auntie Cindy...I'm trying to make my get-a-way...

Thank you to everyone that came on Sunday...it meant the world to me and especially Mommy and Daddy. A special thank you to Blake and Bob and Linda for making the long drive to Bullhead City. I love you all!!!

More London playdate pics

2008-11-10T13:52:00.000-08:00

Mommy wanted to throw this pic in because it shows how bad my back and ribs are getting. When I try to sit up, the right side pokes out a lot.

More pics of LondonRoma and I playing...we are just the cutest kids...don'tcha think so??

Playdate with my nephew

2008-11-10T13:33:00.001-08:00

I love this little light wand...my eye doctor had one and I loved it so Mommy got me my own.

London...going through the animals.

Wow...look what I have...ta-daa
London, let's pull all 300 pieces of this mat out...come on, help me.

Throwing London the evil eye. Mommy don't give that to him...it's MINE..

Mommy wanted London to come over and play with us tonight because she is not sure when I will be feeling well enough to play again...so we caused a little mischief...as only babies can do.

Grant came to visit

2008-11-08T09:25:00.000-08:00

Grant came to BHC on Wednesday...he had some official paperwork to sign ;-) ;-) He played with me for a long time. First he drove me around in my car...then he blew bubbles with me.

Right before he left to go back to Vegas, he said a beautiful prayer for me and the family.

Cousin Jake's 8th birthday party

2008-11-05T20:31:00.000-08:00

Last Saturday, I went to my cousin, Jake's, birthday party.

Here I am lookin' like party central herself :) in an adorable polka dot dress...

Aunt Cindy and I are doing the "Itsy-Bitsy Spider"...that is, by far, my favorite thing to do right now.

Jaime trying desparately to get me to wear my glasses... :(

Playing with cousin, Marissa...

Halloween 2007

2008-11-03T13:21:00.000-08:00

Last year I was a Piggy....cutest little Piggy you ever saw.

Check out my curly tail and hooves...

What a snout I had!!!

Daddy was Farmer Jon, and I was his Piglet...

This is Rose Phillips...she is single-handedly making sure I have a college fund....Thanks, Rose!!

Aunt Shaunacie giving me a Halloween bear from her and Aunt Debbie.

Halloween 2008

2008-11-03T13:06:00.000-08:00

For Halloween, I dressed up as Pebbles. Here I am having a little bob to get some nutrition before the big night.

Mommy, Daddy and me...boy, did I have fun!!

Before we went trick-or-treating...not looking real festive at this time.

Check out the bone...I was a perfect Pebbles.

Asleep

2008-11-03T13:02:00.000-08:00

When Mommy takes a shower she usually puts me in my crib with some toys to play with. I was completely tuckered out and couldn't even lay myself down to sleep so I just crouched in the corner and zonked out...zzzzzzz

OctoberFest

2008-11-03T12:49:00.000-08:00

We were out walking at the OctoberFest at Rotary Park and here is a pic of me....I'm very pooped out.

My nephew, London, or LondonRoma, as Mommy calls him....looking-ever-so-cool in my shades.

Blake's final home football game - Senior night

2008-10-29T22:51:00.000-07:00

Mommy, Blake, Daddy and cuteness...that's me...with the evil eye (if looks could kill)....we are at Blake's last high school home game.

Still the little nudist...

2008-10-29T22:49:00.000-07:00

When Mommy came in to wake me up, I had a surprise for her....I was already up and decided I didn't need my diaper anymore. :P

I also decided I didn't want my shirt on but I couldn't quite get it off.

Notice where the neck hole is......hmmm....

Mommy took this opportunity to snap a few pics of my back...kind of like a before surgery shot.

Mommy loves my birthmark on my butt...it's hard to tell in these pics but it's shaped like a heart....awww....

Another Beautiful Poem

2008-10-29T22:45:00.000-07:00

Mommy wanted me to share another poem with you all...

A Trip to Holland

By Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans…the Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several months of eager anticipation, the day finally arrives. You pack your bags and off you go.

Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland!” “Holland?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place.

So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy.

But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

More pics from the past

2008-10-23T16:14:00.000-07:00

As Mommy was looking through the pictures, she found a few more she wanted to share with my viewers...

A little attitude while eating...hmmm...evil eye... I guess I didn't like what she was feeding me...

BEEEEaUUUtiful blue-eyed girl!!! Much happier in this picture....hehehe

This pic was taken at Aunt Cindy's 50th birthday party (oops, was I supposed to say that?). Daddy had just given me my first taste of lemon...ewww

Grant was scratching my head....I liked it...

Lookin' cuter than ever...jumpin for joy!!

Surgery is scheduled

2008-10-23T15:29:00.000-07:00

This pic was Mommy's first favorite of me. She said I looked very pretty in my hot pink dress that my brother, Ashton bought for me. She called me her little cue ball...I wonder why??? What a skinny, little thing I was...I don't look too happy either???? I think I was at Jennifer's baby shower in this pic...she was pregnant with Joshua...my little friend from a few posts ago. Ok, surgery is scheduled for Wednesday, November 12 at 9:30 am at Phoenix Childrens Hospital.

P. S. Has everyone seen the "car" Daddy made for me...if not, check out the post from October 13...too cute for my own good.

My back

2008-10-23T14:06:00.000-07:00

Mommy quickly took this picture of me this morning as I was watching one of my favorite baby shows. You can see just how bad my back is....sad, huh??? And to think that my original orthopedic doctor, Dr. Vu, was such an idiot and didn't catch it....I can't even repeat where Mommy thinks he should go....straight to ****!!!

The Special Mother

2008-10-22T14:03:00.000-07:00

Mommy wanted me to share this poem with you all......

The Special Mother

by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressure and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children.

Did you ever wonder how these mothers are chosen?

Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation.

As he observes, he instructs his angels to take notes in a giant ledger.

"Armstrong, Beth, son. Patron Saint, Matthew."

"Forrest, Marjorie, daughter. Patron Saint, Celia."

"Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."

Finally he passes a name to an angel and smiles.

"Give her a handicapped child."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God. "Could I give a handicapped child a mother who knows no laughter? That would be cruel."

"But does she have the patience?" asks the angel.

"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off she'll handle it. I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of it's own. She has to make it live in her world, and that's not going to be easy."

"But Lord, I don't think she even believes in you."

God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods.

"If she can't seperate herself from the child occassionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says momma for the first time, she will be witness to a miracle and know it. I will permit her to see clearly the things I see--ignorance, cruelty, prejudice--and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her Patron Saint?" asks the angel, his pen poised in the air.

God smiles. "A mirror will suffice."

Results of appts

2008-10-18T09:46:00.000-07:00

Kinda funny...I'll wear my shades, but not my glasses....hmmm... Look at how long those piggytails are??? This is me throwing Uncle Shaun a dirty look...he played with me so much...I had a ton of fun at their house!!
My cousin, Skyler, eating his basketti...
Well, I had my spine MRI on Thursday and much to Mommy's surprise...it only lasted a little over an hour. They ended up gassing me instead of putting me out through an IV.

On Friday, we met with Dr. Moss, the neurosurgeon, and Mary...his right hand nurse ;-) They reviewed the MRI and concluded I did, in fact, have a severely tethered cord. He said I need to have surgery within the month and should have that scheduled the first part of the week....I will let everyone know when it is. This will be my 4th surgery...good God, I am only 20 months old...

Here is the clincher...it's worse than we thought...he asked Mommy a lot of questions about my legs and feet and their movement. He said there is a possibility that once he gets into my spine and spinal cord area where the tethering is occurring, that if the leg nerves are wound up too much, he might come out and ask Mommy & Daddy if they want them cut. This might truly be the best option for my spinal cords sake. My abdomen and organs are truly more important than my legs. If this should happen, let's pray that Mommy and Daddy are at peace with their decision. On the other hand, Mommy knows a lot of other SB kids online and most come out of surgery pain-free and actually have more mobility. We're praying for that.

Dr. Moss also said I have a Syrinx (google it) located in the cervical area of my spine, but his biggest concern right now is the detethering of my cord. He said the syrinx is very small and shouldn't be causing me any additional pain or discomfort. He wants to reevaluate this theory about 6-8 weeks post surgery.

Off to Phoenix tomorrow

2008-10-13T23:29:00.000-07:00

Mommy and I are going to Phoenix in the morning because I have three appts this week. Tomorrow I have what is called a, "Screening Clinic"...basically that appt is similar to a general pediatric appt...we kinda go over everything. On Thursday I have a full-spine MRI. This procedure is supposed to take up to 3 hours...they will sedate me so no worries about me being in the tube. If you recall, they think I may have tethered cord...see previous post for explanation. On Friday we have an appt with the neurosurgeon, Dr. Moss, to discuss the results of the MRI. That's going to be our week...it's a long one. On Wednesday, Mommy and I will probably go to the daycare so I can play with the kids. Keep praying...we will get the results posted as soon as we can ;-)

My new car!!

2008-10-13T23:27:00.000-07:00

This is my new car that Daddy made for me.

Someome gave me a walker so Daddy put a footbar up so I can kick back and enjoy the ride!! My own personal carnival ride!!