Thursday, June 9, 2011

Well we are still waiting for the results of the EEG test done last week.  It seems to be taking longer than expected, and I'm just praying that it shows that he is not having Infantile Spasm seizures and it's something different and way less concerning!  Patrick has been researching online and found that the medication that eases the tightness in his muscles may cause seizures.  So we looked back at hard dates and found that these new seizures began within a few days after we started the medication.  We spoke with the doctor and she has decreased the medication until Monday but has not yet prescribed a new med.  She said if the seizures decrease by Monday we will take him off Baclofen, but if not we will keep him on it.  Patrick and I discussed it and agree that we want him all the way off  Baclofen before we decide if it is what caused the seizures or not.  When we began that med he was at a much smaller dose than he is now, and so we feel that just decreasing it will not give us an accurate picture.  I thank God for these doctors, though, and the fact that they listen to us and respect what we have to say.  In fact, many of you may remember the doctor that I ranted about when Levi was in the PICU.  Turns out he knew what he was talking about.  I really didn't care for his attitude in the beginning, but we have grown to respect his opinion and feel that he is much kinder than we originally believed.

I've been looking back over some of our recent posts, and it brings to mind what Pastor Daren is always teaching, that when you are expecting a miracle you should look back at all the miracles God has done for you in the past.  I'm believing that these Infantile Spasm seizures will go away very soon!  Looking back, I see that He has not only cured Levi of meningitis, but there were things like the PICC line.  I hated that thing!  But we walked it out and got past it and now I rarely think about those days.  At the time they seemed neverending, but that's been several months ago now.  We have gone through extreme screaming fits and projectile vomiting which turned out to be acid reflux and is now well under control.  It's only recently that Levi has begun to sleep well at night.  All these issues seemed to be insurmountable at the time but once taken care of are rarely thought of anymore.  I know that this will be the case with the Infantile Spasm seizures!  It's something we must walk out that will pass with time and I believe Levi will be none the worse for it.  God is working His plan through us, and although I have no idea where He is going with it, He knows, and that will just have to be good enough for me.  I trust Him.

Please continue praying for our little Levi, and know that we are praying blessings on all of you!  Don't forget about the party on June 18th!

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