Thursday, May 03, 2007

National Day of Prayer, 5/3/07 and Emily's 8th

Isn't it comforting to know that you're being prayed for? I know during Emily's recent Emergency Room visit dear friends in our hometown had contacted everyone they know and asked them to pray for Emily. When I learned that, it was real comfort in what could have been a desperate situation.

Today (May 3, 2007) is National Day of Prayer, as well as Emily's 8th birthday. I want to ask anyone who might read this to pray for her, and drop me a line at sowers {at} thefieldistheworld {period} com, if you will. In case we haven't contacted you through e-mail or telephone, in case you haven't read our update in our prayer letter, or you need a summary, here's the situation:

On Saturday, April 21, at about 12:30PM, Cindy was in line at a store with Emily and Luke, and Emily started telling Cindy she was tired and wanted to go home. That would have attracted no attention, except that Emily said it with a pronounced slur, like someone who needed speech therapy. We had some kids come for a visit in the last few weeks who attended speech therapy, so Cindy turned around to tell her it wasn't nice to try to talk like them, even though Emily never mocks anyone. But Emily said she wasn't trying to, she couldn't help it. And Cindy noticed she was talking with her lips drooping on one side. She spoke that way for 20 minutes, and ended up talking in totally nonsense sentences for the last 15 minutes of that, crying in the last 3-5 minutes because, she said, "I'm thinking things and the words won't come!"

Bringing her home, Cindy put her in her bed for a nap, assuming the week's schedule, with two early morning tests, ballet class, swimming lessons and tennis with mom and dad had simply worn her out. Cindy lay down with her and rubbed her head, because Emily told her she had a headache. I called a friend who is a nurse, and she warned us to call her pediatrician or take her to the Emergency Room just in case. So I left a message with the pediatrician, and she called back around the end of Emily's nap. When Emily woke up, she ate a few cheesy crackers and almost immediately threw them up.

We had packed a set of overnight clothes for both children while she was asleep; for Luke, to stay at a friend's house, for Emily, in case we were at the hospital overnight. They got us in quickly for an MRI, Emily was extremely calm and self-controlled for nearly an hour listening to music as the machine thumped and droned all around her still little form. (She spent the next week as an ER doctor giving her friends "MRI's")

She also had blood tests while there, and we got to look at the MRI before we left. Praise God it was totally normal. The MRI was administered in order to try to rule rule out a brain tumor, aneurism or stroke, while the blood work was for ruling out stroke or diabetes. The doctor confessed at that point that he couldn't really tell what had caused Emily's episode...but that he was pretty sure it wasn't "nothing." So he instructed us to schedule an EEG in order to rule out Epilepsy, adding that he was convinced he could trust us (looking me in the eyes) to follow through with that. Of course, there's no way we wouldn't have followed through with it, but it underlined his concern.

I watched the kids on Monday while Cindy called....for hours...calling our insurance, calling the Emergency Room, calling the Pediatrician, looking up "in-network" vs. "out-of-network" providers on our PPO's provider list. Only 4 Pediatric Neurologists are in the Orlando Metro area, and 2 of them are not in our network. One sent a list of questions that told us she was trying to diagnose psychological as well as physical problems...so that left one. It was also turning out that the earliest we could see anyone was September. (Even trying a call to Tampa.) So Cindy stopped and prayed.

Then she decided to call again and she asked the nurse who schedules the appointments how to do it. Her advice was to have Emily's Pediatrician write a prescription requesting the EEG at a hospital that was "in network" and then request that that EEG be READ by that one remaining "in-network" doctor who worked with that hospital. So Cindy asked her if her doctor _could_ read the results and she said, "no problem." That enabled her to get on this guy's schedule and eventually led to his finding a patient who was willing to switch appointments with Emily.

So her EEG test was scheduled for Thursday, April 26th, and we had to keep her awake until 2:30AM to ensure that she was able to fall asleep during the test. We awakened her at 6:30AM to get her to the test on time, and because of this she _did_ fall asleep during the test and we were able to get a "good reading," which is all the technician could tell us. Then, in answer to Cindy's prayer, we were able to get that exchanged appointment with the Neurologist on Monday, May 1st.

Like contemplating the "possibilities" her presentation could suggest, spending time in the waiting room of the Pediatric Neurologist is indescribably humbling. A child whose body are nears adolescence sits in a wheelchair and haltingly tries to sound out words from a primer; other children with seemingly perfect physical health are accompanied by parents with haunted looks. It's difficult to attain the divine perspective on chronically debilitating conditions like this, but we can't help but be grateful to the Lord for the spiritual, mental, emotional and physical health of our children!

The doctor had a wonderful way of putting Emily at ease, doing neurological tests while seeming to be simply at play with her. His evaluation was that she seemed very healthy in all respects, and he informed us that her EEG was also completely healthy. He nevertheless believes, because of her symptoms and her age of onset, that she has a condition called "Benign Rolandic Epilepsy," telling us that this condition has no known causes, but that around 65% will never have another seizure. Episodes are more likely to occur during sleep, so he suggests hooking her up for a 24-48-hour period at dormitories at his offices, but admits that even if an EEG leads to a diagnosis of this condition, he very likely will not prescribe medication for her.

Our online research of this condition showed us that some 90% of children with this condition outgrow it by age 15, that misdiagnosis of epilepsy can occur relatively frequently, (as one article puts it, "...a single seizure, even if thought to be epileptic in origin, does not constitute a diagnosis of epilepsy."), and that the impact of improper medication on the developing brain is not well understood. A good friend also added the suggestion that if there's no need for medication, an official diagnosis of the condition on her record might itself have implications on her future that we would want to consider.

Our friends and our church have been wonderful to us during this time! Thank you so much for your support and prayers. Please continue to pray for wisdom and peace.

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