Monday, August 8, 2011
the end of a long day.
I am OVERWHELMED at the support and love that we all have received. Not just a fluffy kind of love but the Christ-like, self sacrificing servant kind of love. I feel the body of Christ around us so strong and it has truly made this withstand-able.
Not a lot of "new" news today. They informed us that the surgery will be 11:30 on Friday, which I am looking forward to and dreading at the same time. Probably a lot more dreading than looking forward too. We are reassured that the surgeon who will perform it is "the best" and an expert at this particular operation. Non official diagnosis is Craniopharyngioma, yes a mouthful.
Levi wasn't cooperating for some of the initial exams today but the neuro-oncologist suspects some loss of vision on his left periphery. We expect to see an neuro-opthamologist tomorrow and they should be able tell more. Of course what vision he has now is not as important as what vision he has after the surgery, since damage to the optical nerves is one of the major concerns.
His spirits seem much better today, I got to spend time with my precious Levi the way he was before all this made him so miserable. He spent his day asking for Choc Chip Kids Cliffs Bars which he knows as "chocolate bar", and when I mean spent his day, I really mean it. Let's hope tomorrow he might get a taste! Tonight he is on clear liquids, but I am happy to say that he has been holding those down quite well and even asked to feed himself his popcicle. I had to look the other way to be putting all that food dye into him, I mean how do they even make red that bright anyway? (sorry, it' just a thing of mine)
Hoping I can get some sleep tonight, needless to say last night's attempt was a complete failure. Thankfully Dan is a sleeping champ, or rather lack of sleep champ and is going to do another night at the hospital while I run home.
Thanks to you all for reading this and loving, really loving my little Levi.