Winter days in the Life of J....

We have had some snow lately, or actually the Weather channel used the term, "Thunder snow".  We get heavy snow, then rain, then either hail or sleet, then lightning and thunder then its cold for a few days.  The snow doesn't stick around, but that has been our pattern for the last two weeks.  

We went to see Dr. Marouk, Neurosurgeon for our yearly follow-up and to get the results of our MRI we did on February 14.  I had wondered with an episode a few months back if his shunt wasn't working correctly and sure enough the MRI showed Jeremy's ventricles were a tad larger than last year MRI, but not enough to rush off for surgery.  Jeremy is still progressing physically, emotionally and cognitively.  We will be watching J, see Dr. Marouk in 6 months with a CT scan.

This past weekend, there was a time J got really agitated with me, rubbing his eyes really hard like he got something in there, but wouldn't let us look in his eyes, pointing to his head saying, "fix it".  I was ready to call Marouk.  He was showing signs of getting a UTI earlier in the week so I took a sample in on Friday.  Jeremy cratered fast.  Our Super-Awesome Pediatrician, Dr. Cyrus always comes through for Jeremy, got the results called in an antibiotic and he started them Sunday.  Jeremy did stay home for 3 days but was improving daily.  The good news is the UTI are getting farther apart, which is what we want to the point they don't exist.

Jeremy got another round of botox injections on Wednesday in both legs.  I'm gearing up for another round of great improvements in him.  I told him to tell Dr. Miller and Heather by, he just folds up his little arms puts them in his lap, sticks out his tongue and is silent.

He is getting brave, sometimes he looks at me like just darn me to let go, I tell him, "go right ahead".  He does this side kick that is hard not to laugh at because it's so cute, he will be standing there, stick out his tongue and start kicking his leg sideways or backwards.  He continues to be verbal and responding to commands, "help me dress you" he will put up his legs, or hold out his arms.  This is a boy who knows what he wants.  His nurse brought him a hamburger one night, he finally ate the meat so I wadded up the bun in the package and thew it away, the next morning after my shower I come into the kitchen to find him sitting at the table with that wadded up hamburger bun on the table.  I negotiated that for some corn tortillas.  Then this morning he knew the nurse had her chips on top of the ice-box so I come to the kitchen and he's trying to get something off the ice box, which I knew what it was I told him the chips on on the table.   He insisted they go to school with him.

Here are a few pictures of the ornery little boy.

He wrote on his face with a dry erase marker

He insisted he wear his glasses to bed (he was asleep)

He got in one of his tickle me Jeremy modes