"You want a doctor interested in the the gestalt of your child."

These were the words of our pediatrician last Tuesday when we met with him.  It is one of the main reasons we are so fond of him and the care he gives our boys.  He recognizes them wholly.

We went moved through our week holding out some hope that maybe the meds would provide a touch of relief for Houlder.  That maybe our plan for the lumbar puncture and spinal mri would move along quickly so that we can get some answers and move Houlder up to Hopkins to figure out the heck is going on.

Porter at fencing Wednesday

Frazer at fencing Wednesday

Thursday was a full day.  Frazer had an ultrasound which showed that the renal cyst had not grown and will only need observation.  As we left after five hours at the hospital, I got a message from our ped.  The neurosuregon will see him in a week, and he does not want Frazer to have the spinal mri.  This doctor claimed on the phone to our pediatrician that kids with chiari don't usually have tethered cords which is different than the literature.  But we will still go and try because Frazer has to start somewhere. I guess it does not help me my connection to the national support group for chiari is local and had shared with me that her child was treated by this same suregon.  She had been told for years that her child could not have a tethered cord, and the PNS never ordered the spinal mri.  When the family finally went to Charlottesville, they learned her child did have a tethered cord which caused endless headaches.  I am already trying to convince myself to be open but it was interesting how Frazer has over half the symptoms but this PNS summarily, without reviewing the case, was rejecting the idea.  William's take is that maybe he wants to be the one to catch it.

Of course, William cannot go to that appointment because he has to take Houlder to another doctor's appointment at the same time.  Sadly, I feel that I need to trust my gut with this PNS more than I do the other appointment.  Men and women just experience things differently, but in writing that I wonder if William should take Frazer.  Maybe he can wrangle the spinal mri better than I can.  Will have to think on that.

Additionally, Thursday I got a call from pediatric nuerologist's office giving me an appointment for Frazer.  The endocrine had requested one, and I guess was given an appointment in October which apparently he felt was ridiculous.  He got him another one on the 26th.  Our pediatrician had thought we should skip the whole neurologist thing but I figure one more check in with a different person after the pediatric neurosurgeon cannot hurt. 

I also had to rush disks with mri's and reports to the second opinion pediatric neurologist for Houlder who is willing to consider doing a lumbar puncture but wants to see films again.

By Thursday night, Houlder was curled in a ball of pain from the neuro med.  His back hurt and his stomach -- both common side effects of the meds.

That was Thursday.

Frazer -growth hormone testing watching Pokemon

Friday Frazer and I spent 6 hours in the infusion room of Children's Hospital while he had the testing for growth hormone.  It went relatively easily given the laptop and wifi and instant netflix.  He did pass out at one juncture for 20-30 minutes but they gave him an iv to pep him up.  He had been fine and then whoop, out he went.  It was a long time to be there but in the end, no big worries.

Houlder was miserable again on Friday because of the medicine.

William and I contacted the pediatrician but had no word over the weekend.  The pain was crummy and we just hated waiting to find out that we need more information. 

Sunday Houlder was almost the worst yet as he had some sort of change or addition to the headache.  He said it felt like he had a second one on top of the first.  He is in fact unclear about it.  The pain medicine that made him loopy made him so fuzzy that it scared him.  The other neuro medicine finally left his system after 48 hours.  We debated whether or not we should take him to the ER.  We thought and could not figure out how it would help.  Maybe we are being cynical but unless they would admit him, we could not imagine what they would do.

I have checked on Houlder every 20-30 minutes all night.  Cannot help myself.  I don't want that changed pain to mean something more.  

Porter did run in the rain Saturday his first race.  There were no ribbons but he was the fifth one to cross the finish line.  Dell worked all day on his paper so that he could see an old preschool buddy who was visiting form Portland.  Frazer had a friend over and they got to see "Rio."  There were moments of normal life which were helpful. 

Lining up

Going for the second lap

Yellow spray painted hair for VGF

VGF rain walk

the Odyssey

The night before the GH testing -- brothers sleeping together to ease the nerves in mom and dad's bed

Friends have been so great reaching out and offering to help lead lego group or make a meal or take over some SRA responsibilities.   William, Dell and I got a tuck load of horse manure and two truckloads of top soil so that we can throw together some sort of garden.  Basically herbs.

Monday is usually a fresh start kind of day for me.  I hope the coffee can rally that spirit.  Got to make the plan happen because truly it is about the gestalt.  A little bit of a kink does not take down the whole but too many kinks makes it much tougher for the sum to be greater than it parts.