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Sunday, November 30, 2008

Thanksgiving Drama

For some reason this never posted a few weeks back ...We had a nice day on Thanksgiving with the Evans family in Greensboro.  Roxie loved the special sweet potato casserole that her Nana made for her and she also tried lots of the other yummy dishes.  She seemed happy and healthy on Thursday.  However that night Roxie woke up around 2:30am and her Dad went in to try to get her back to sleep.  He slept next to her for a few hours and then came running in to get me at 5:40 with Roxie in his arms.  She was just beginning to have a seizure.  We gave her the Diastat shot immediately (Valium)  and the seizure stopped progressing. However she continued to have rhythmic eye movement for the next hour, which we think was continued seizure activity.  Then at 6:40 the seizure began to progress again.  We gave her a second shot of Diastat and left for the ER.  The second dose completely knocked her out and stopped any visible seizure activity.  Although we were initially underwhelmed by the old and drab appearance of the ER facility at Cone Hospital in Greensboro, the staff there was great and took good care of us while we were there.  We do now feel blessed to have such nice pediatric ER facilities in Charlotte.  Roxie continued to be stable in the ER and we were discharged by 10:15.  The blood and urine samples taken in the ER to check for signs of infection were normal as was the chest X-ray, so we still had no idea what had caused the seizures.  Roxie was discharged and we went home hoping she'd just sleep off the Diastat and be fine.  But then just a few hours later Roxie started vomitting.  She was sick on and off for the rest of the day and through the night and was extremely weak.  And on Saturday morning she woke up and wanted to eat and then fell back to sleep for the rest of the morning.  We decided to try to go back to Charlotte at that point since Roxie kept food down for 3 hours.  We'd feel more comfortable in case of another emergency in Charlotte.   She had a hard time on the trip home and was still grouchy for the first 3 hours we were back.  But at 3:00 she suddenly seemed to have some energy  and her mood improved.  She continued to get better for the rest of the day.  Then on Sunday morning Roxie was back to her normal self.  We think that she may have had a stomach bug (again). We were sad and frustrated that we were not to be able to see the Sprinkle and Thomas side of the family as we had planned because of the illness.  But we had to consider that the Sprinkle's farm is at least 30 minutes from an ER.  Phelps and I try not to be tied down because of Roxie's medical challenges, but we don't want to take chances when we know she is sick.  

On Tuesday we met with Roxie's Neurologist, Dr. Nelson,  to discuss where to go from here since she's now had 5 seizures in less than 3 months.  The good news is that the eye movement that Roxie continued to have for an hour last Friday even after the first dose of Diastat is a minor seizure and does not cause brain damage.  Also, she explained that epileptic patients who may have never had a status seizure as a small baby or child, may later have seizures that progress into status.  This is because as the white matter in the brain grows because it allows more and deeper connections of the activity.  I guess that made us feel a little better.  She gave us a new arsenal of medications to try to use when Roxie does have another seizure including a tablet that dissolves in the mouth and a medicine that we can squirt up the nose.  And we have a schedule to increase the anti-seizure medications whenever Roxie does have another seizure.  Dr. Nelson did mention that there was a small possibility that Roxie could be having so much more seizure activity because of a stroke.  We have seen no regression, but she said it is possible the stroke is in an area that doesn't affect development.  Dr. Nelson indicated this is a remote possibility, but Roxie is at risk for stroke because of her Mitochondrial Disease.  So we are scheduling an MRI in the next few months just to take a peak at her brain.  We hope and expect everything to be OK, but it was a reminder that in the future complications and regression are always a possibility for Roxie.  

But to end on a happy note, Roxie has been taking steps with her PT and with her teachers at school for the past month.  Her muscles continue to strengthen!  Yeah Roxie!

Wednesday, November 12, 2008

New Research on Roxie's Birthday

Today's Roxie's sixth birthday. She had a great day, and it seemed clear that she knew it was her special day. Mom made her a cake and she loved her gifts, one of which was an interactive DVD.

Tonight I came across some very cool research. Not sure whether it has anything to do with Mitochondrial Disease, but it's very interesting.

Tuesday, November 11, 2008

Bracing for Flu and Cold Season

Every time Roxie coughs or gets a runny nose Phelps and I get a little anxious.  It is impossible to forget the severe RSV and psnumonia Roxie battled last January at Hemby Children's Hospital.  I sometimes have flash backs while I'm in the shower of her surrounded by doctors and nurses helping her breath as monitor alarms buzz and beep (a sound that will forever make me tense) or of her sedated and breathing for weeks with the help of a vent.  Doctors had previously warned us that Roxie is "at risk" for severe illness because of her muscle weakness and Mitochondrial Disease.  But until last January we had been relatively lucky as far as her health goes.  And she did finally recover in early February after 17 days in the hospital and a few weeks on a TPN line at home.  Since then she has been relatively healthy.  Unfortunately over the past two months Roxie has had 3 seizure episodes and 2 illnesses resulting in trips to the ER, but luckily no overnight stays at the hospital. Phelps and I are more than a little worried about any illness that this cold and flu season could bring to Roxie.  She had her flu shot a few weeks ago and we stress the importance of hand washing to her teachers at school and CAP workers at home. We know that totally avoiding germs is impossible especially with the kids in her class. But when an illness does strike we are a little calmer because we are more experienced at administering the Diastat shot given when she goes into status epilepticus (a long convulsive seizure lasting more than a few minutes) and know that in the past her vitals have remained stable during the seizures. So although we are worried about the next 4 months, hopefully we won't have any overnight hospital stays or too many trips to the doctor this winter.  Please remember that everyone should get a flu shot and wash your hands more often to keep our community a safer place for at risk kids like Roxie.

Wednesday, November 05, 2008

The Cure at Troy

As I type, I'm wearing three bracelets, hand-made in Kenya, and given to me by my parents over a decade ago. During the early evening hours as the election results were just starting to come in, my four-year-old daughter, McRae, pulled these bracelets from a random drawer in our living room where I had placed them a couple years ago and said: "Here Daddy, you wear these."

Without hesitation, I put them on. As I did so, I remembered their Kenyan origins, and almost simultaneously, realized that the man I hoped would be named the next President of the United States also had a connection to Kenya. The coincidence was uncanny, but I didn't have time to dwell on it. Instead, I just let it add to the special moment that seemed to be unfolding.

Now, with the results finalized, I can't help but reflect on the significance of all the "uncanny coincidences" that have occurred through this election cycle. But I don't believe any of this has truly been a coincidence. I believe our nation saw a person with humility and statesmanship and vision and fairness, and we decided to act on our instincts. We decided to shake off our cynicism and fear of "being had" and elected someone who we believe can take our best qualities, our greatest strengths, and use them for good and prosperity in America and abroad.

After Obama was declared the victor, the television studios flashed historical images of the civil rights struggle in America juxtaposed with live images of people celebrating from around the world. It was powerful in so many ways. This is a seminal moment in our lifetimes. I believe most people recognize it and will make the most of it. We have a lot of important work to do. And as I wear the Kenyan bracelets that my daughter handed me -- perhaps unwittingly, perhaps not -- I am thankful, proud, and humbled to be living for this and to know that the next generation now has a brighter future.

I am reminded of an excerpt from a poem that hangs in my office. It's by Seamus Heaney, and it's called "The Cure at Troy."

Human beings suffer,
they torture one another,
they get hurt and get hard.
No poem or play or song
can fully right a wrong
inflicted or endured.

The innocent in gaols
beat on their bars together.
A hunger-striker's father
stands in the graveyard dumb.
The police widow in veils
faints at the funeral home.

History says, Don't hope
on this side of the grave.
But then, once in a lifetime
the longed for tidal wave
of justice can rise up,
and hope and history rhyme.

So hope for a great sea-change
on the far side of revenge.
Believe that a further shore
is reachable from here.
Believe in miracles
and cures and healing wells.

Call the miracle self-healing:
The utter self-revealing
double-take of feeling.
If there's fire on the mountain
Or lightning and storm
And a god speaks from the sky

That means someone is hearing
the outcry and the birth-cry
of new life at its term.