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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 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

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 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!!

This is my new car that Daddy made for me.

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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.