Lauren was up at CHLA yesterday. With the rain, it took over two hours to make a 60-mile trip up to the hospital. Her labs results were good, so they lowered her daily steroids dosage down another 2.5 mg so she is now on 10 mg a day. Her blood pressure was high, which it's been since early November. We didn't meet with Dr. Finlay, but we met with Anna (P.A.). We discussed Lauren's dizzy spells and her eye problem. She consulted with Dr. Finlay and neither are concerned. They both continue to believe her issues are related to her steroids and her high blood pressure. While that makes Hil and I both feel a little better, we're still not totally relieved. We'll feel much better after Lauren's next MRI on Feb. 3rd. But we'll try not to dwell on it. Of course that is much easier said than done.
Speaking of which, me and Hil were discussing the other day how each of us deal with stress. Hilary said she thinks about Lauren and prays for her all day, every day. While I, this is going to sound bad, play golf in my head all day long, especially when I'm going to bed and trying to fall asleep. I think about the next golf course I'm going to play and how I will play every shot on every hole of that course. I told you it was going to sound bad. It sounds even worse writing it. But this is the only way I've been able to stay sane. Except the last few days, due to Lauren's dizzy spells, I've haven't been able to use that stress-reliever tactic beccause I can't stop worrying about Lauren. It has caused me to wake up 4 or 5 times a night. So now I'm tired!!
Now that Lauren has gotten both her flu and swine flu shots (two shots were recommended to help her body build extra immunity), with the okay from Anna and Dr. Finlay, Lauren is going to back to school! And Marissa too!!! Both are really excited. Of course, the person that is the most excited is Hilary. Apparently keeping three young girls occupied at home, every day is tiring. Not that I would want to trade places with her. While it's nice to see how excited Lauren is about going back to school, it sure makes us nervous, especially with the regular flu season about to kick in. It will be especially good for Marissa, since she has a lot more energy than Lauren. Lauren can sit still for hours working on her homework and/or coloring. While Marissa likes to run around the house like a rabid tiger, sliding across the floor, jumping off the sofa and pouncing on anything that moves.
We've continuing to give Lauren 4 oz. of Hilary's breast milk a day, without her knowledge of course. A couple days ago we were almost busted. We usually mix it in some chocolate milk, but we were out of chocolate milk mix so we had to give it to with only her regular milk. After a couple of sips she said this milk tastes funny. Behind her back, me and Hilary looked at each other, bit our lips and had a oh-oh look on her face. "What do mean?" we asked. She said, "this milk tastes like Finlay's breath." We just added extra cow milk to help dilute the taste and it worked. Whew!
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
Thursday, December 31, 2009
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