Wednesday, October 29, 2008
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.
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
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!!
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.
Wednesday, October 22, 2008
Saturday, October 18, 2008
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.
Monday, October 13, 2008
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
Wednesday, October 1, 2008
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.