Friday

I made it to one more event for Kylie!  Difficult and I am a fool for trying it, but it did go okay.  Kylie is in drill team and they went to state this week.  Their team did great!  It was a challenge for me between the travel and the competition itself.  Kyle and the kids went into the auditorium and watched several hours of the competition.  I had my wheelchair (which I really don't like but again it made it possible) which I sat in in a few places that were quieter.  The first half I sat in a quiet corner, but then the last hour or two I sat out a little more in a main hall in hopes of seeing Kylie just once with her team.  What a surprise when they all came walking by and stopped and then even took a picture!  So I now have a picture of the drill team with me (in my wheelchair) and I got to see Kylie all ready to go for a performance.  The trip home was tough but pain meds got me home and although it was hard, it was worth it again.

I don't remember writing what happened with the SC neurosurgeon after the spinal tap.  As I suspected, he felt the number was at the low end of normal.  He is willing to send me to a neurologist or consider doing an injection into the occipital nerve in an attempt to help the headache that way.  The neurologist idea is not at all attractive to me since I have gone that route and have tried every drug combinations I think there could be.  I am just not sold on the drug route again since that attempts to mask the symptoms rather than address the problem, and in my case it didn't really mask the symptoms, either.  The second route is something we would consider but JH really felt a shunt patency test was important to first verify the shunt is working correctly.  So rather than jumping into the injection (we don't feel a neurologist especially locally is going to help) we felt that we should see if there was something else to know. 

The reassurance we have with Johns Hopkins is that their neurosurgery department is rated #1 in the nation and this small group of doctors I see specialize in the problem that I have.  JH doesn't believe that the spinal tap is all that conclusive.  They said that the books will say that it is the test to do, but clinically they have found that it can vary from day to day to time of day and be impacted by a variety of other factors.  So I may have surgery, I may have the injection or who knows what other ideas they may have that they haven't mentioned.  Whatever it is, I pray that I can improve and find contentment again in the place the Lord has placed.