Baylie's journey through Chiari Malformation and Psuedotumor Cerebri/LP Shunt

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Journal

Tuesday, August 12, 2008 6:34 AM CDT

Today is the first day of school!!!!!!!!! Yipeeeeeeeeeeeeeeeeeeeeeeeee! Baylie and Cidney were so excited last night that it took them forever to fall asleep. I had enough about 2am when they were still coming in my room that I threatened them that they would not be able to go to school if they came in my room one more time. That was the last I saw of them. I don't know if they actually went to sleep but at least they were not in my room!

Yesterday at our ice cream social at school when people asked Baylie how her summer was, her comment was..."not so great, I have been in alot of pain". It made me so sad, she rarely talks about her pain.

Last week after I updated her journal we ended up in the ER. Her shoulder pain was so bad that she asked to go and get some better medicine. Of course it was the usual nightmare of not knowing her condition. I almost got in a fist fight with the doctor, he insisted on doing an x-ray on her head of her "VP" shunt. He could not get it that she had an LP shunt. I insisted that I did not want my child to be exposed to unnecessary radiation because of a doctor that does not listen to the patients or their parents .The look on the x-ray techs face was priceless.

So we got her some better medicine and had them burn the x-rays on a cd and out the door we went. After all the doctor said everything was "fine". After looking at the x-rays on my computer it looks like her tubing from her shunt is really high up and may be hitting a nerve. She is better, just headaches as usual.

Thanks for checking up on her. Abbey started 6th grade today. Wow my oldest in middle school, kind of wierd. I am off to the bus stop with Baylie and Cidney so I will update again later.

Hospital Information:

University Of Chicago Childrens Hospital
5839 South Maryland Ave.
Chicago, IL 60637
773-702-1000

Links:

E-mail Author: tressieowen@hotmail.com

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