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Wednesday, October 29, 2008

Blake's final home football game - Senior night

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...

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's hard to tell in these pics but it's shaped like a heart....awww....

Another Beautiful Poem

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.

Thursday, October 23, 2008

More pics from the past

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

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 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

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 ****!!!

Wednesday, October 22, 2008

The Special Mother

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."

Saturday, October 18, 2008

Results of appts

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 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'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.

Monday, October 13, 2008

Off to Phoenix tomorrow

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'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!!

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!!

Katri's birthday party

Mommy and I went to Katri's birthday party on Saturday. Katri is Catherine and Glen Rajaniemi's daughter. We had to dress snugly because the party was at their cabin in the Hualapai Mountains near Kingman, AZ.
Me....looking ever so sporty in my new outfit from Memaw...I've got my party hat on but no drink or balloon in my hand.

Guess who showed up at the party...ELMO!! I love Elmo but this guy was a little big.

This is Katri...she's ONE!!

This is David...he is not ONE yet...few more months and we'll have another party to attend!!

Mommy and I with green tongues, lips and fingers after eating cupcakes.

Friday, October 3, 2008

Taking a break from all that Shopping!!

Oma and I had to make a quick call to Papa....Big Dog's is closing....

Wednesday, October 1, 2008

My new glasses

So far, my brother, Ashton is the only one that can get me to keep my glasses on...even if it was for only a minute. He is snapping on the strap in this pic. A little adjustment...
Taadaaa....cuteness at its finest!!

Update on doc visits from last week

Mommy waking me up...I'm chillin' with pillows from her bed. We stayed in a motel again because we went to see some of Mommy's friends from when she was in college and it would have taken 1 1/2 to 2 hours to get out to Uncle Shaun's house after that. Mommy loves this motel because they give her 5 pillows on the bed.

Me with my new eyeglass case...I think it is a phone...hmmm??? No dial tone...

We had to go to Phoenix on Thursday for several appts. The first appt was a renal (kidney) ultrasound at St. Joseph's Hosp; second appt was with the urologist, Dr. Ritchey, at CRS. We discussed the results of the ultrasound which were good...Yea!!! Mommy really tries to stay on top of my cathing so there isn't any reflux of urine from my bladder up into my kidneys....if that did happen, that would put waste back into my bloodstream since the kidney filter your blood. We do not have to do another urodynamics test....that tests the how much pressure my bladder can stand before I leak...until March, after my 2nd spina bifida clinic.

Lastly, we went and picked up my glasses...I don't like them and do not want to wear them.