Thursday, June 30, 2011


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

Monday, June 20, 2011

another quick update-

Hoping to have the time soon to fully update on Camilla's progress and post some new pics and video but for now I hope you'll settle for a quickie update. We do NOT have to go to the OR to resolve the issues with her incision (at least not this week). Dr. Blount believed that it was showing some signs of healing but warned us that progress would be SLOW and we are still not off the hook with the OR. He wants to see us again next week to be sure that things are still headed in a positive direction. Today he talked like if they did have to take her at this point (or next week) that they would put her to sleep long enough to scrap off the scabs that have formed and clean it thoroughly. There are still no signs of infection but they are being very cautious - which we are thankful for - I still have to clean the incision twice daily.

Thank you all again for your prayers. They ARE being felt and answered - God is listening. Thanks too for the well-wishes - they continue to encourage and strenthen us each day. And another thanks for the meals that continue to come - with the two trips to Tuscaloosa and one to Birmingham per week for the last three weeks I haven't had the time, energy or desire to think about food - what a relief it has been to have a warm and delicious dinner delivered most every afternoon :)

Please continue to pray for healing - for seizures, for the incision, for development. Also for safety as we travel to and from therapy and visits. Her first post-op EEG is scheduled for next week - pray for this too - we want a clean report. We continue to have seizure-free days but we want to see the 'normal' EEG with our unbelieving eyes and our scared hearts. I don't know why we continue to doubt and live in fear of seeing another seizure - God let us know awhile back that He had great things in store for Camilla - pray for us too - God has been faithful - pray for us to be as well.

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

Tuesday, June 14, 2011

quick update-

I don't have time for a thorough update tonight but I want to put out a request to all my praying friends. We returned to Children's again today for the second wound check on her incision and didn't get the report we were hoping for. They are still concerned about the way it is healing and although there are no signs of infection at this time they are concerned that this may become an issue. We now have to go from cleaning one spot on the incision (about 1 inch) twice a day with hydrogen peroxide to cleaning the entire cut (about 7 inches) three times a day with soap and peroxide in addition to washing her hair daily to clean it. Please pray for these cleanings because they are painful for her - it is difficult to hold her down to do them and the soap and peroxide obviously burn or tingle - she is also not very happy with me at all right now because I have to do the majority of them since Brandon is working out of town.

We will return to see Dr. Blount on Monday for the next check and he told us today that if it is not better or if it is still 'headed in the wrong direction' that he will take her back to the OR to clean and restitch the wound (most likely Tuesday). PLEASE PRAY that she does not have to go back to the OR for this and that we can get it turned around this week. I'm so scared that if we put her body through the trauma of another surgery that seizures might return - and we have been four weeks without seeing ANY!!!! I also just don't want to see her have to endure any more pain or any setbacks!!! We know how powerful prayer is - we have felt it through this whole process and right now we COVET your prayers.

More details to follow soon -

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