Odyssey of Thought

I am unexceptional in the hours I spend driving in my Honda Odyssey.  During my time I try to connect the dots of our lives.  For whatever reason, I am driven by the feeling that our bodies are connected parts to each other, that humans are connected to each other, that humans are connected to their environment and that we are, despite overwhelming evidence to the contrary, driven to function in unison -- not harmony necessarily. Driving kids to practices -- now primarily doctors appointments -- and school provide me much contemplation.  I keep wrestling my synapses to make order from the nonsensical.  I believe there must be a "connect the Dot" at Ben Franklin that I have missed. 

Insert picture of the "thinker" driving an old beat up silver Honda Odyssey with a twist. The thinker is a middle age mother who needs her oldest child to jump out of bed and run to school and splash in the pool and her third child to trip a switch and make an adjustment to turn the dial back.

Tuesday night William and I met with our pediatrician for 3 hours.  We are extremely grateful that he could meet with us.  He apologized that he sent us to someone that he thought would find Houlder's case as much a puzzle as he did.  He was not the one who needed to apologize.  He stepped up, and we have a plan as follows:
Houlder:

1. lumbar puncture with pediatric neurologist we got second opinion from
2. spinal MRI in case of tethered cord or other issues
3. following up on ideas of chlorine toxicity and glutton intolerance
4. re-screening of lyme, mono, chronic fatigue and a few others
5. pain management doctors
6. appointment at Hopkins with a pediatric neurologist and hopefully a few days admission to observe him

Frazer:

1. spinal MRI to check for tethered cord which is prevalent in Chiari patients
2. appointment with pediatric neuro-surgeon
3. appointment with geneticist
4. looking into some of the specialists for Chiari at DC's Children's Hospital, University of Chicago's Children's Hospital (both have grants from NIH), Duke, and UVA
5. initial contact is local but planning that treatment maybe out of town -- options vary widely from fairly extreme (removing 4 inches of skull to make room for growth) to a wait and watch
6. pursuing the growth hormone testing tomorrow which will be horrible for sweet Fraz but also pursuing the connections between chiari and growth hormone -- there is a connection but literature is not clear.  It may or may not effect treatment plans but will also compel us to find a place that treats it in a collective group way and not so practitioner by practitioner.
7. following through with urology ultrasound today to follow up on cyst found in January -- probably nothing but maybe relevant once genetic testing results come back
8. Continue to postpone ASD heart repair until we have a better grip of the entire situation

Okey Dokey.

Got that?

The stuff rumbles around my gray matter.  For info on the chiari try www.asap.org.

Friends, you have been awesome reaching out and helping.  We appreciate it so much.  I owe many folks notes back and emails and FB's.  I am getting there.  Maybe this weekend.

Porter is running in his first race at Collegiate, a 1/2 mile fun run, and then tee ball and Village Green Fair (sugar and inflatables).  Dell continues to write a research paper using Laura Hilenbrand's Unbroken and Kurt Vonnegut's Palm Sunday and Slaughterhouse Five to explore treatment of American POW's and how they re-entered American life.  Have no clue if he has a clue but it is some big idea thinking.  William continues to study every waking minute that he is not traveling and working for this test he has in June.  We are developing a new normal but it is changing a bit each day.

It is the truth.  Hopefully we will make it back in better time than Odysseus.