Parker update March 9

Today was a good day for us.

Parker retains his fever but they think it could be related to inflammation in his head still healing as opposed to an infection.

He is doing better at holding his head up -- but still with pain.

He has an auditory nerve test scheduled for tomorrow at 1PM. We are a bit nervous about this as one of the major potential side effects is hearing loss and we have not seen him be overtly responsive to sounds since he has been awake.

I started out this morning alone with Parker at the hospital in hopeful anticipation that the weekend was over and things would start happening again. It didn't seem that was on his treatment plan for the morning and by the time Renee arrived at 11 AM I was getting anxious to progress, starting to pace the halls, call doctors, start making progress goals for PJ, looking at mitigating potential future scenarios, etc. At some time during this Renee decided it would be good for me to go back to work.

While for the first 2 weeks it was essential for us to both be here together as much as possible, we both felt that we were in a good enough place that we could rotate hospital shifts so we could gradually resume some of our former responsibilities.

My work has been amazing through all of this and have basically told me to come back when I wanted to come back and if I needed to come back partially-- they would adjust. It was nice to get outside the sterile hospital environment for a couple of hours, to think about other things; different things than pneumoccocal meningitis and its side effects. Re-connect with colleagues who have been supporting other unnoticed burdens while also sending moral support. Work is a good distraction from life.

While I was gone, Renee and PJ were visited by the "Rire Medecin" a group of singing clowns that roam the hospital and provide a bit of relief to children and families. After they left Renee wrote this tender note on a the back of one of the drawings Abby made for Parker:

"2 clowns came by and sang to my soul today. 'Il fait beau, petit poussin' pour Parker. It was soooo beautiful and touching and healing. I cried. I cried for my stress, my worry, exhaustion. They shut the door and I cried some more. 'Lache' she said to me, 'Lache'. I cried for my son- for his pain, for his suffering- for his choice. I cried for God. I cried for His love, for His grace, for His strength... to me, to you, for all of us. Our souls have been torn-no- ripped wide open- exposed- then filled up with hope & faith & prayers. All of mine, and Johns and all of our dear, dear loving friends'. We have been strengthened - by our own resolve... but carried as a couple- as a family- as a unit- by all of your quick, un-judging, raw expressions of love and concern & prayers. Today we celebrate that with earnest. I realize that the sickness is three weeks long for Parker... and for us.

Week one -- Survive
Week two -- Endure
Week three -- Heal

We are looking at week three ---- and feeling the healing.

'Il fait beau, petit poussin, Parker... Il fait beau.' "