Diagnostic Dilemma

One of the most coachable, teachable, parentable qualities of Houlder is his intrinsic gift of using a struggle or "failure" as an opportunity to improve and refine and relearn.  His internal sense of himself is assured and pleasant.  He enjoys taking the time to figure out the best solution.  He is not deterred if the immediate answer is not desirable.

He has tenacity and inventiveness.

He remains resolute that we will find the explanation.
He maintains this belief despite our unfruitful week in the hospital.

We left with nada.

Nothing.

Zero.

Zip.

It was a diappointing expereince on many levels.  At one point a doctor asked Houlder what he wanted out of his life.  Didn't he want to just get up and move on?

Again, my child's grace is greater than mine.  The retorts that sprang to my mind are not so polite, but he told the inquiring mind, "Of course, when I heal I will finish 9th grade, finish high school, go to college where I want to swim and do something after I graduate." 


His answer was not satisfying to the questioner.

I am often proud of Houlder, but it is not because I have taught him these skills.  His own barometer is a great guide.  Trust me, if it were more in our control, William and I would have duplicated the process. 

And, in the same manner, we cannot force curiosity in a system or process that either does not not have the time for it or reward it.

MCV ran out of options and ways to explore Houlder's situation.  We met nice doctors.  We met doctors who care.  We had some terrific nurses.  At a meeting in which we asked all the players to come to the table, in walks two parent /patient advocates without us asking them to join in -- the kindergarten mom and a SRA dad. 

But, we have nothing.

I don't want to be mad.  I am trying to be like my kid and receive the blow and collect the pieces and move on.  I am finding ways to reduce or disarm Houlder's pain.

Fortunately, that appointment at UVA has come through.  We head there today.  UVA has a different approach to headaches like Houlder's as a disease and studies them while in the mri -- I think it is a functional mri but I am not sure. 

He has an appointment in Bethesda in 10 days with at the Greater Washington Headache Clinic.  This doctor looks at the headache being triggered by something else which needs to be uncovered.

One of the doctors posted Houlder's case on a listserv.  A doctor from the Mayo clinic seems to have a great deal of experience with this kind of situation.  So, I am hoping UVA and Bethesda pan out, but the land of 10,000 Lakes may be roll into view in the future.

I am not usually as tenacious as Houlder but finding what is causing this horrific pain rouses in me a need to uncover and discern what it could be.  We will keep looking and searching and visiting people until we can stop the pain.