Xander eating Bacon, the food he eats with every meal because he can
Smiling despite his aggrevation
Sarah spent the night with X again, we were taking turns this week, but she really wanted to stay with him again last night, so I conceded. I am not sure how many seizures he has had, but it looks like he is on his second recording sheet, with nothing but auras on it, no seizures. It makes me wonder what is going on, I am preparing myself for another rollercoaster ride, I am fairly sure that the doctors thought EEG monitoring would be over by now, I think we all did. I am sure of one thing, X is glad not to have his head wrapped up like a mummy; the Dr.'s said as long as he didn't pick at the electrodes he could be mummy-free.
Opening up the two care packages that came in, with his momma
Again the last few days have been uneventful, besides the ever constant screaming coming from the room next door. Thankfully as I wrote this, we have since moved, to our fourth room; this one is much nicer, roomier, and has a 40" flat screen TV. The only bad thing is, while he is being monitored, there was no internet access. So here's what happened today.....
We came into our new room, and we made ourselves at home, Sarah left, after being with him for 2 days, and I took over. Our waiting continued, Xander fell asleep for and woke up an hour later since the nurse wanted to flush his IV. It made no sense since she asked if she could and I said no, I let him be pissed at her, I figured both deserved it. At this time one of the techs talked about quitting since he had not had a seizure, I told him we were going to wait as long as possible. It was almost 2:30 and I wasn't sure we were going to get what we wanted, a seizure; as I was trying to update his status on FB via cell phone, he had one. The funny thing was I was posting that he was not having any and we needed prayer so this could be all over with, for his sake. They were able to inject him with the stuff necessary, and away we went to the scan.
This was his face when Sarah showed him what his Preschool made him
He was not happy about it and made sure everyone knew about it, including our new nurse who referred to herself only as "grandma", a self proclaimed title that would hold absolutely no weight in the eyes of Xander. Every time she tried to console him while en route to the scan, he would tell her "Leave me alone, no I want my daddy". This was also the case for every other nurse and assistant, I explained that he was in no mood to be friendly, and that he was sick of all of this, they said they understood. He fought going under, as usual, and screamed till his eyes rolled back, I felt horrible watching him so upset.
He was so excited to open and read his Valentines
When he came to, it was pretty much the same story; anyone who tried to help him was greeted by a loud and extended "NO!" and if they did not heed his warning it was followed by a swinging limb. I tried to calm him, but it was pointless as long as nurses were there; they got the point and finally left, only then was I able to calm him down. About 10 minutes later "grandma" nurse came in and asked if she could give him his meds. I told her "If you could wait that would be great" another nurse said "Yeah he just calmed him down" and again I was ignored, she said "Grandma's just going to clean your IV then give you medicine". The response to that was the same response he had given nurses all day, and week really, "NO!” That was followed by more crying, she tried to console him, and he yelled louder, again I let them both hash it out since she was so insistent, and he deserved to yell if he was going to be ignored. I only intervened when she "Shhh'd" him, I am sure you all know this about me by now, but there MAY be one or two people who can SHH any of my kids while I am around, and a nurse who has known him 2 hours cannot. She looked over to me and I gave her a death stare that would have scared the grim reaper himself; she immediately left his side and I took over, calming him down a few minutes later. She got the point to leave him alone and we were able to leave recovery and go back to our room; I will say one thing about "Grandma" nurse, she is persistent, and doesn't take things personally, we are good with each other now, I think we both know she messed up and it will not happen again.
The Scar looking better
So now we are up to the minute, literally, X is waiting on the food I ordered for him watching "Hotel for Dogs" while munching on Chex mix and I am blogging. And just for good measure the screaming boy is over in the hall as well, I just heard 10 minutes of nonstop screaming, very similar to that which was heard earlier. We have had some news from the Dr.'s, however until they are more certain, I am going to hold off on telling you, it's not really good news either. One last thing, we are all in good spirits, I think we are all trying to be for each other, and because it makes it easier to deal with stuff, we have our moments, or days, but that is to be expected. Okay, I lied, one last thing; Nana Judi has been a HUGE help, she has been here for almost a week, and I know all of us will miss her when she leaves, Thanks Nana Judi.
To all our CA family and friends
To everyone who has sent us a care package, Thanks, they are helpful, and Xander loves all the letters from his friends and family, we do too.
What a ride... Still miss you and praying constantly. Thanks for the update and photos. He's such an awesome kid... XOXO
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