Behind bars........

I's 4:30 a.m. and all is well in the stillness of this night. I just unhooked one of Jophies antibiotics and was hooking up the next when I noticed he was still awake. This is how you will find him most nights keeping me company as I tend to his needs. I guess some would cringe at the thoughts of staying up all night but to us its just "our normal". In fact I cherish this time I have alone with him. It's so precious to me and I wouldn't trade it for anything.

Once I managed to get his antibiotic running I leaned down to peek in at him. Of course I just melted at that sweet face smiling back at me. My heart absolutely goes all mooshy when his eyes lock onto mine especially when its accompanied by that smile.

These are things he should not be able to do......

You see not only is Jophies brain severely damaged but he also is considered legally blind so for him to show any signs of communication let alone "make very obvious direct eye contact" is nothing short of a miracle. Trust me I've seen the scans and this child should be on a vent in a vegetative state.

His eyes were tested when he was a baby but it's really difficult to determine how impaired because of his inability to complete an actual eye exam. His neurologist however does have a way to "test" kids who have brain damage. The test is a bit primitive compared to all our modern technology but amazingly we were able to determine that he can in fact "see" just not well.

We were also able to determine that.....

• One eye is better than the other
• He can see black/white/bright colors best
• You have to get very close to his face for him to see you
• His field of vision is not directly in front of him
• He can in fact track certain objects

All of this information has been so helpful in how we care for Jophie and that my friends is but one small piece of the Jophie puzzle.

For now he continues on the Zosyn and Vancomycin through the 16th but from there I'm not sure of the next step. My prayer is that he will show NO signs of infection so we can pull the PICC line and get on with life. He continues to struggle with an upset tummy, yeast, a sore mouth/lips as well as a bloody raw bum due to these very strong antibiotics. We're also awaiting test results to determine if he has C-diff. This is nothing new as he has had this a couple times in the past. Their drug of choice for Jophie has always been Flagyl which would mean a few more weeks of IV therapy. I pray he doesn't have this but if so we'll just "Soldier on" because each step we take is just bringing us closer to victory....

This I know!

And now off to sleepy land I go because if my head bangs this keyboard one more time I'm sure to get a concusion!

I sure hope my little convict is asleep now :0)