Thursday, May 16, 2013

The Latest and Greatest and not so Greatest

Levi had an appointment with Dr Q last Friday.  It went well, overall.  There haven't been any changes to his EEG, which is on the good side.  Dr Q feels like Levi is progressing better than 90 - 95 percent of most children with his condition.  This was very encouraging to hear.  And then came the "but".  Why is there always a "but"?  Until now I had thought that once we had his seizures under control and we had ruled out any known causes (which we did) that we could stop having so many appointments (every three to four months).  I thought we could only go uphill from here.  BUT, yes there's that word again, the problem is that as much as half of those diagnosed with infantile spasm will later present with a completely debilitating form of epilepsy that leaves the person with daily, uncontrolled seizures of all kinds and a high probability of severe mental handicap.  (cue my heart sinking to my stomach)

Dr Q said that Levi is not showing any signs for this syndrome, but that it can present anywhere from age 2 to age 6 and even beyond.  So, we have to watch him closely.

It seems that since he's doing so well, Dr Q feels very encouraged that we probably won't have to worry about it.  But, just that there's a chance is pretty scary, especially when I was just thinking there was no way it could get worse.  Honestly, that's what I've been hanging on to until now.  So, since it can get worse I'm just having to learn to trust God in an entirely new way.   I am trying to hope for the best and yet be prepared if the worst were to happen.  
One thing I know is that God spoke to my heart when all of this was first starting.  He told me, "Levi is going to be who I made him to be."  I have been clinging to that even more since I heard that it could possibly get so much worse.  I keep speaking Psalm 139 over him - that's the one about being "fearfully and wonderfully made".  Please, please be praying for my Levi.  Would you pray Psalm 139 over him?  Would you pray that the epilepsy would not progress to this way worse syndrome?  Would you pray for his complete healing?  Would you pray for peace and grace for his Mom and Dad, too?

On another note (pun intended as you'll see), I've had the perfect outlet to help me process all of this.  I've joined the annual 5in5 challenge with a bunch of musician friends all over the globe this year!  It's really cool. We all have to write five entirely new songs in five days (get the pun now?  note.... song?  Ha!)  Anyway, a couple of the songs that I've written have come straight from the emotions of the past year.  I hadn't written much music since everything happened with Levi.  I think it was a way of protecting myself, so it's been really good to get it all out.

Here's the links to the songs that I mentioned above:  I hope you enjoy them.

This song is from day 4 of 5in5:

This song is from day 1 of 5in5:

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