Nightline & New Med

Tonight, on Nightline (ABC) at 11:35 they are doing a show about a child with Infantile Spasms who had brain surgery. I don't believe it is the kind that Oliver could have because that child, Evan, doesn't have TSC. At this point neurosurgery has not been mentioned as a option for Oliver but, every failed drug puts us closer to that reality. From the article it looks like it will be interesting. Some of the statistics in the story are scary but, this is the reality of IS and why they are so bad! Below is the link:

http://abcnews.go.com/Health/baby-half-brain-removed-treat-seizures/story?id=12503272

Med Update:

This afternoon we were able to give Oliver his first dose of Clobazam. So far he is seizure free but, that doesn't mean much yet. It will take at least 3 straight days of no spasms for me to feel like this is possibly the answer we've prayed for.

Also, he has done a few animal sounds today and a few of the developmental items we thought he "lost". Praise the Lord! We are so encouraged! There are many more to recover but, we hope this is a trend. He has his developmental assessment on Jan. 4th which should give us more detailed information.

Mom & Dad Update:

It continues to be hard for us as parents. I think we are wearing the stress on our faces these days. Our minds are besieged with thoughts and emotions as we care for Oliver and wonder what exactly is going on in his brain. We are praying constantly for direction and strength. It is easy to be overwhelmed with the magnitude of these decisions. In many ways this has been more challenging than any other time we have faced. The adrenaline is gone and the reality of the road ahead has set in. That being said I am reminding myself that now is the time for us to rise to the occasion and accept this challenge. Now is the time for us to take heart and keep working tirelessly for Oliver. I mean this is what it is to be a parent! It is hard, this ain't for wimps. We need more faith now then ever before. Please pray we'll be transformed by this experience and we won't allow it to define or break us. We want to leave a legacy of faith and strength to Oliver- now is the time, now is the test. There will be rest eventually so now we have to run the race set before us.

Therefore, since we have so great a cloud of witnesses surrounding us, let us also lay aside every encumbrance and the sin which so easily entangles us, and let us run with endurance the race that is set before us, fixing our eyes on Jesus, the author and perfecter of faith, who for the joy set before Him endured the cross, despising the shame, and has sat down at the right hand of the throne of God.

-Hebrews 12:1-2