Luke had the EEG first. He does so great...it must be old hat for him now. They attach 25 different wires to his head and secure them with some very STINKY glue. It's yucky. But anyway, he fell right to sleep, which was great because they always need some portion of the study to be while he's sleeping. So, the EEG showed no changes. :( I'm not surprised...he seizes everyday, so I didn't really expect his brain to look any better today. Still, it's hard to actually have them say that to you. The plan now is to increase the med and see if that helps at all. We return to St. Louis on Nov. 25th. If nothing has changed by then, they'll discontinue this med and do the steroid therapy. Sigh. I get a knot in my stomach every time I think about it. I just really don't think Luke would handle steroid therapy very well. It's suppresses the immune system (they told us we'd be home bound again for 3-6 months since it's flu season), can cause dangerously high blood pressure and has several other adverse side effects that I think would be really hard on Luke. So, the truth is, I'm pretty scared. We have 12 days for something big to happen. Nothing's impossible, I know.
Luke also had a spinal tab this afternoon. He did well for that also. Had to be put all the way under, but he handled the anesthesia ok. Thank God. This was done to check chemical levels in the brain (specifically neuro transmitters from what I understand). They are still trying to figure out exactly WHY he is having the spasms, so that's why they did the spinal tap. The results of that won't come back for several weeks.
If you're reading this and praying, thank you. The longer we travel this road with Luke, the more we come to understand we are truly FEARFULLY AND WONDERFULLY made. It's just unbelievable how every intricate detail has to come together just right in order for things to work like they should. It's comforting to know we are asking Luke's CREATOR to take care of him. We have some great docs, but it seems now, more than ever, we need a miracle.
Hi Andrew and Christie. We can't imagine what you have been through and are still going through. I don't want to sound trite or to offer any cliches. But I do know that God has you and Luke in His hands, that He has not forgotten you, that He hears every moan and sigh, sees every tear, and feels the pain of your heart. We continue to pray with you for Luke's complete healing, for your comfort and peace of mind and that you will wonderfully find yourself in the manifest presence of God today. We love you guys!
ReplyDeleteAs you said one time Kristi, 'Luke is a stud'!!
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