On Sunday, Lauren's two enzyme counts were at 430 and 200 something. They both need to be below 100. This is a big improvement from Friday when the one enzyme count was over 800. The on-call GI (gastro-intestine) doctor for the weekend said he is really not concerned with the count as much as the fact they have plateau'd. As long as they are the same or better he thinks we'll start Lauren on clear liquids today. While I'm sure he is a competent doctor, he just met Lauren for the first time this weekend. Two weeks ago, we started Lauren back on liquids and food too fast and she had a relapse. The regular GI doctor's plan was to go very-very slow this time. We trust his opinion a little more since he's familiar with Lauren's condition. Hopefully the regular GI doctor will be back today.
Thankfully, CHOC is allowing one other designated family member other than the parents into the room. We signed up granny as the "other." This allowed me, Hilary and Marissa to spend some time together yesterday, which we spent roaming the Main Place mall and having dinner at Olive Garden. That was nice, but we are sure hoping and praying that Lauren's pancreas gets better and that she can come home this week. It's getting so hard on both girls (not to mention prego-Hilary). Last night when I told Marissa good-bye, she was going to granda and granny's house to stay the night (which she has been doing for the past two weeks), she started crying and latched on to me with a vise-grip type hug and wouldn't let go. She wanted to come home with me, but since I need to be at work by 6:30 she can't stay with me. After 15-minutes, I finally had to pry her off of me. Heartbreaking. While Lauren doesn't usually make the same fuss as Marissa, it's still heartbreaking and depressing to say goodbye to her and Hilary, and then go home to an empty home.
Other stuff:
- Yesterday was Lauren's last basketball game/practice. She was really disappointed she couldn't be there since she heard she was going to get a trophy. It would have been her first trophy. Thankfully one of the other mom's picked it up for her (thanks Cathy).
- We spoke briefly with Dr. Finlay about the swine flu and Lauren going to school. I got the impression that he is not as concerned as CHOC is. We're going to discuss further next week when we meet with him after Lauren's MRI on Aug. 5th.
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
Monday, July 27, 2009
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