More Crazy days loom ahead

I apologize for not updating sooner, I was literally being smothered by all three boys who refused to allow me time to myself. Poor Israel missed me so much he refused to leave my side, even to sleep, when I had to discipline him (Time-out) for trying to bite his brother he cried so hard I actually felt really bad. Zane screamed like a banshee when I took the elevator without him and when I went into the room without him. Xander just randomly comes up and hugs and kisses me telling me that he missed me so much he cried. It’s good to know you are loved so much.


I have some good news, X has not had a seizure in two weeks, he is on high doses of his meds., and on Dilantin, but at least his brain has been able to rest. Besides a few dozen scabs on his bed, and the occasional bloody end result, X has been doing well. He even mentioned missing his doctors, and wanting to stop by and visit with them. Now on to more current things; as I type this Sarah and I are waiting in X’s PICU room, she is sleeping and I am waiting for him to arrive. Let me fill you in on what has gone on, yesterday we had the functional MRI, that lasted 2 hours. Here is a link if you want to better understand a Functional MRI http://www.radiologyinfo.org/en/info.cfm?pg=fmribrain X did exceptionally well, the techs did say they were very impressed with his ability to do what was asked of him. We only had one meltdown, and that was resolved in a matter of minutes.

We have still not yet received the results of that test, but after meeting with both Dr. Wetjen (surgeon) and Dr. Worrall (neurologist) is was decided that the grids would be placed on his brain; which leads us to today. X and I stayed at a hotel since Auntie Deven and little Wren have blessed us with a visit, and only 5 are allowed in our room. The boys love them both, making it that much easier to leave them in their care, and I am was equally pleased to learn that Wren knew her comic book heroes, despite being a very southern lady. Now I say that not because I am being sexist, I just have never met a young girl who knew not only comic book characters, but their real identities, I was and am impressed.

On a side note, the hotel X and I stayed at was a bit of an adventure in itself. While en route to the hotel X said “YES! Me and you get to stay in a Hotel! No loud boys yelling…..No mommy yelling at me (In a very mommy like voice) ‘Xander why are you doing that, stop it?’ Just me and my daddy.” I laughed so hard, I told him “Yup no more yellers”. When we finally arrived I was trying hard to be optimistic about the place, but it was really hard to do; the place looked like a mix between a 1970’s B horror movie, and a cheap adult film site. I made sure I kept X very close by as we walked to our room, anytime he went to touch something I would grab him and pull him back. I was going to leave when I opened up our room, but X was so excited he started jumping from bed to bed squealing; I figured “Ehh, this will just be another good story to tell him later.”, so we stayed. The hotel bathroom smelled like really bad feet, all my law enforcement friends will know exactly what I am talking about, the weird part was it was only the tub.

I let X play around for a bit, then washed his head with that red anti-bacterial soap; or as I called it “Superman Soap”, he bought it making it easier for me. After that we settled down and 4:40 came quicker than we expected.

Once we got to the hospital X was happy as usual, and made the nurses laugh; we saw a few people we knew (Dr.’s and nurses) and he was sure to hug them all. Once again he asked me to go with him to the surgery room, and once again I had to watch as he fought every second of being put to sleep. No tears this time, for me, I am not sure what is going on. I sort of feel numb about the whole thing, maybe because this is the second time around. At any rate, no tears, Sarah on the other hand, has been crying quite a bit, I am guessing because she has not had a break from this whole thing and is now at her breaking point.

I will post more later, pictures will come as well. We all know how these next few days go, so I should be able to keep you all up to date. The both of us as honestly not looking forward to seeing X is so much pain again. As always thank you to all who have been praying for us and have blessed us with gifts. To all my blue friends, thanks, you are like family.

OKAY quick very up to the minute update: He is out of surgery and in our room. He is in more pain than the last time, but at least that part is over. I can tell already it is going to be a long night. The functional MRI was inconclusive, we just found that out as well, that really stinks but hopefully we can get it figured out without that. The internet connection here is very touchy, there are times we have it and other times the floor is shut off, so that is why I am not able to always post as soon as I want to.