relapse-

Heavy is the heart that has to write the word relapse but that is where we find ourselves tonight - relapse. After about a week of denying the 'funny jerks' or 'odd shakes' there was no denying the cluster of four seizures that I saw this morning. We were sitting in Jack's eating breakfast just Camilla, Crosby and I as we were about to head to Tuscaloosa for speech therapy. I'm almost glad that we were in a public place and I couldn't break down and scream and throw things like I wanted to but then again I must say that it just seemed too cordial a greeting to quietly throw my trash away and gather the kids and leave with tears streaming from my eyes. All day long I've tetered between really not being suprised by this relapse at all and being completely broken. Thank God that -at this time- they are not affecting her as they did before. They only seemed to engage her right side although I think her entire body tensed during the events but she had no post-ictal state where before she would run, cry out, and act as if she were scared or in pain. She just gave a little smile and looked at me following them and then went about eating as if nothing had happened.

Her first post-op EEG is scheduled for the 11th but we will see Dr. Blount (neurosurgeon) tomorrow at Children's to check on the incision. He will most likely have plently to say about the relapse and what possible options, treatments and recommendations he would expect from Dr. Kim (neurologist). As for the incision it is looking much healthier as a whole; however, we are still very concerned about the original one-inch section that has remained problemsome. Brandon is scrubbing her head every night to completely remove the scabs and it is a very upsetting process and seems to be very painful although Camilla is handling it like a champ. We will see tomorrow if we have done enough for it to heal on its own or if he will choose to take her back to the OR to care for that one spot.

We continue to travel to speech therapy twice a week and although it is going well - it is just going very SLOW. Same thing goes for physical therapy - although she is no longer locking her left knee when she walks (developed post op). We are also in the process of making decisions regarding the upcoming school year and are very apprehensive at this point that we are making the best decisions for her.

As for our next step - who knows???? I'm going to play Scarlett on that one - "I can't think about that right now. If I do, I'll go crazy. I'll think about that tomorrow."

Update to follow soon - I will leave you with several positives:
-Camilla said the word Jesus this week and kissed his picture while we were reading her 'Jesus Loves Me' book (it sounded more like CHE-ta but there was no doubt what she meant)
-Camilla was able to sit through the entire movie 'Cars 2' this week - this would have NEVER happened before due to her hyperactivity - we never even once had to take her out and let her run around and come back or anything - she just sat and ate her popcorn and wasn't loud and only stood up two or three times but never tried to leave her seat - AMAZING
-Camilla has slept through the night for the last several weeks - everyone at this house is feeling better and so thankful (I hope I didn't just jinx tonight)
-Camilla has not wet the bed in the last week - I can't remember when was the last time that happened

Although we are very frustrated and deflated at this point and we are wondering how this relapse fits into God's plan - we know it will. We trust HIS will -

"For I know the plans I have for you" declares the Lord, "plans to prosper you and not harm you. Plans to give you hope and a future." Jeremiah 29:11