Still Think it's JUST Eye Boogers??

Guess what Jace woke up with? His eyes crusted shut! I dare the doctors to tell me they are just "eye boogers" again. I can tell the primary care doctors do not want to deal with me. They made their rounds early in the morning before Jace was awake and when I did mention the eye stuff to one of them she literally acted like she didn't hear me. I need to say something again - I am starting to lose fight in me, either from being tired or from really being more concerned about the seizures and getting his medication right. Can't wait for JB to get back up here and let him be the bad guy for a little bit.

So I snapped a quick picture of Jace acting like a monkey while changing rooms last night.

We were moving pretty quickly so the picture is blurry but you can see he is standing on his monitor and hanging on to the rails - like he was surfing! LOL

Jace was ALL smiles yesterday at dinner!

I LOVE this FACE - even when its covered in chocolate!

Today some co-workers came up to visit with us. They brought us lunch and visited for a while. Its nice to talk to someone else here besides nurses and doctors. Thank you Ranjita and Ida!

Since Jace slept in so well this morning (not like he had a choice since he partied all night long) I got to take my time showering. My mom brought my razor up here to me and boy was I thankful. I was starting to feel very....ummm.....European! LOL

Ok - on to the serious stuff now. Jace's last episode was yesterday at 12:40 pm until he had one this morning after playing in the playroom and then had another one after lunch. 3 hours apart exactly. Oh how I wish these would just be done and over with already.

The neuro team made their rounds and explained that the EEG yesterday still showed seizure activity. The only good news about this was the light induction test didn't cause Jace to have a seizure - its nice to know we don't have to look out and avoid strobe lights or poorly working florescent lights for the rest of his life.
The team was discussing what they wanted to try and the neuro who was in charge today (not the same as the one from earlier this week) said that Banzel is very new. Not much has been documented on it about toxicity. All I do know is that we are not going to push the limits when it comes to increasing his dose. I am only willing to go to an amount that seems reasonable for Jace's age and weight.

I am running on little sleep so I think I will end the post here and if I forgot anything I will update again later!