Just found out the Lauren's enzyme levels doubled from 400 to 800. They need to be below 100. The GI (gastro intestine) doctor said he is very annoyed. He thinks it might be the decadron (steroid) or the lingering virus or both. So basically he doesn't know why they are not going down. I sure hope it's not the steroids, since we have been having a hard time weaning Lauren off of them and in the past she can not function without them. Her speech becomes slurred and she gets headaches. The GI doc, by the way, is great. He really is considerate to what Lauren hears and always interacts with her and makes her smile.
Hilary told me that Lauren cried twice last night, when I left and again at 2:30 am when she got up to go to the bathroom. She cried for 15 minutes last night that she misses daddy. While she might have been crying for daddy, it's mostly because she is stuck at the hospital and wants to go home.
Hilary asks everyone to pray that her counts go down so that we can go home. I think we are getting close to a breaking point.
The Nihei's: Our Story
On April 1, 2008, our 4-year-old daughter, Lauren, was diagnosed with a brain tumor. After her biopsy on April 8th it was determined that she had a bithalamic anaplastic astrocytoma with extension into her brain stem.
In the beginning of March we noticed a personality change in Lauren who normally is a very outgoing and happy-go-lucky kid. She became very clingy and shy. She didn't want to talk on the phone anymore, or play on the slide with the other kids at pre-school. By mid-March, Lauren started complaining about headaches. Her pediatrician thought it might be a sinus infection or that she may need glasses. He put her on antibiotics and we made an eye appointment.
A few days later when she started holding her head funny and her headaches returned we insisted on a CT scan. That's when her pediatrician sent us to the ER at Children's Hospital of Orange County (CHOC) for a CT scan, and when our world was turned upside down and our nightmare began...
Story continues at bottom of page
In the beginning of March we noticed a personality change in Lauren who normally is a very outgoing and happy-go-lucky kid. She became very clingy and shy. She didn't want to talk on the phone anymore, or play on the slide with the other kids at pre-school. By mid-March, Lauren started complaining about headaches. Her pediatrician thought it might be a sinus infection or that she may need glasses. He put her on antibiotics and we made an eye appointment.
A few days later when she started holding her head funny and her headaches returned we insisted on a CT scan. That's when her pediatrician sent us to the ER at Children's Hospital of Orange County (CHOC) for a CT scan, and when our world was turned upside down and our nightmare began...
Story continues at bottom of page
Friday, July 24, 2009
Update
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