King Clarke :)

It is a strange day. It makes the week seem so long and out of the ordinary when we don't attend FCC back in Cleveland. But a church is a church, wherever you are, even a hospital room. Brenna and I just finished singing a few praise and worship songs and she just drifted off to sleep. David went down to check out the service they announced they were having in the chapel. He heard it announced over the intercom and was interested in seeing what it was all about.

We got a text message that church back at home was really good and there was a baptism. God is so awesome!!

We did a little arts and crafts this morning and Brenna made a crown for Dr. Clarke. He came in and she presented it to him. He was very tickled and I took their picture together. He's a very happy, joyful guy. No wonder Brenna likes him.

Action Shots

They brought a therapy dog by to say hi on Thursday after her test. His name was Connley and he loved Brenna - and she loved him too.
Dad and Brenna in the playroom on Friday. It's good to see her smile. They gave her a little backpack to hold her ponytail wires in so they wouldn't drag the ground. It was still pretty heavy. No wonder she got tired so quickly!

Layin' Low

We did get to go to the playroom for a while yesterday. We played a little bowling but her legs got tired, so then we let her shoot baskets while Daddy and I got the rebounds. She sat in a chair with a basket full of balls and shot them at a small goal. She enjoyed that for a while and then her arm gave out, so we played "Trouble" and then painted for a little bit. In all, I think we were out of the room for about an hour before she was totally exhausted and had to go back to bed.

The anesthesiologist came in and asked a few questions and said that she's scheduled for surgery Monday morning at 7:00. Hopefully all goes well and we won't be delayed again. I'm just so ready for it to be done and for her to get all those wires out of her brain!

Last night she had a little trouble going to sleep again, so we did a hidden-picture book for a while until I thought I might go cross-eyed. Then we listened to Chris Tomlin and Hillsong music to help her relax. She finally fell asleep and then slept pretty well through the night.

Today has been pretty much the same as yesterday. Uneventful - which is a good thing. I'm kind of concerned because they unhooked her again but she doesn't want to get out of bed. She's slept more today too and just been kind of down. Of course, a lot of that might be all the meds. They've really got her loaded up with the seizure medication and that can cause her to be pretty grumpy besides the fact that she has a hole in her head with hundreds of wires coming out. That would be enough to make any normal person a little bit on the grouchy side. Maybe after she wakes up she'll feel like moving around a bit.

As for me and David, we've about finished an entire Sudoku book and are eating way more than we should. It's not that we're hungry - it's just that eating out of boredom thing. But, I'm getting a lot of Bible reading done. That's a good thing. I should probably work on my Sunday School lesson, but I just can't get into that mindset right now. Oh well, maybe next week.

Brave Brenna

This is our girl with all the wires. They wrapped them in red coban (like sticky ace bandage) to keep them from tangling. Isn't she a brave little soldier?

Visitor from School!

Yesterday afternoon Brenna got a visit from the counselor at her school in Cleveland, Mrs. Litrell. She had called and said that her husband worked for the airline and if possible she might fly out and visit if Brenna felt up to it. So, she flew in yesterday and brightened Brenna's day. It was good for her to see a familiar face and I know it made her feel special to know that a teacher came all this way just to see her. She brought Brenna a joke book - which she loved. She always wants to tell jokes and sometimes makes up her own. Mrs. Litrell stayed for a couple of hours and then left for home. We were thankful that she took a whole day out just to come and cheer up our girl. It really meant a lot to us.

During the afternoon, they did the speech mapping of Brenna's brain. I had no idea that it was going to be such a big to-do. They came in and rearranged the room so that they could bring in the computers and machines and then make room for all the people. Besides David and I, there were probably about 10 people either watching or performing the test. What they did was hook up some of the wires from her head to this machine and computer. They then asked her to point at pictures and they would send some kind of sensation to areas of her brain. Somehow, her response and the timing showed them where certain skills were in her brain. At one point, the area they were in caused her to have a severe toothache. She started crying and holding her mouth. So, they stopped where they were and Dr. Clarke said that they probably had touched the area where her facial feeling/nerves are. That was really weird. Anyway, the test lasted a little under an hour, but I think all the people and the test itself stressed Brenna out. I was glad when it was over. I am still uncomfortable with them messing with her brain - who wouldn't be? Then, after the test was over, Dr. Clarke showed us an actual picture they took of Brenna's brain during the surgery. (He made sure David wasn't squeamish). It was amazing and horrifying all together - to see my daughter's brain exposed like that. He showed us the grid of leads and where they are going to go in to remove the tissue. You could see almost her entire left half of her brain. My poor baby girl is going to have a huge scar, I'm sure. I know it doesn't matter - what matters is her getting better.

Anyway, today is going to be an easier day. Dr. Clarke said he would like to unhook her from the monitor so she could go to the play room this afternoon for a couple of hours. She's excited about that. It will be good for her to get up and move around a bit. It will be good for all of us to get up and move. Sitting in this room is really making my leg stiff. But I'm not complaining - I can't when I look at my daughter.

Much Better!

Yesterday was a much better day! We started out the morning by getting Brenna's catheter out. Actually, it was coming out on it's own (ouch), so they took it out and we got her up out of bed for the first time and she was able to walk to the bathroom with help. Of course, it's kind of a huge ordeal with all the wires and attachments. Her poor little head probably feels like it weighs a ton!

She was also communicating much better. She would stay awake for longer periods of time and talk like normal. Thank the Lord! At one point she even gave Dr. Clarke a "peace out" sign when he left - which caused much laughter from the rest of us. Just seeing her sense of humor causes us to feel so much better about things.

She colored a little bit and then we worked on a hidden pictures book together. But she would fall asleep often. She woke up a little more yesterday evening and we watched half of the cartoon Robin Hood together. David and I are taking turns going to the Grizzlies House to get some rest, so it was my turn to stay in the hospital last night. She went to sleep at about 11:00, but then woke up whimpering around 3:00am. I'm not sure why, but she couldn't go back to sleep so I got up and read to her. It was supposed to help her sleep, but I think I was reading myself to sleep more than her. But after about an hour and a half, she drifted off, so I went back to my nice comfy cot and snoozed too.

This morning it was hard to motivate myself to move, but David brought in Starbucks and that helped tremendously!

Dr. Clarke came in this morning and asked her some questions. He was glad that she answered everything correctly and spoke clearly because he was seeing seizure activity on the monitor. He said he wonders if she's been having seizures at home that we don't even know about. (That's wonderful.) Anyway, he said her stomach pain seizures they've located pretty much coming from the hypo campus. The problem is that these other seizures are coming from a different area. So, when Dr. Boop gets back they have to discuss whether or not they're going to have to go into both areas to resect tissue or just the one area. I hate it that she's possibly been having more seizures all this time and we didn't even know it because the symptoms were so subtle. But I guess we just have to trust God to give the docs wisdom to know what to do about it.

This afternoon, they are going to map out the speech part of her brain. Clarke said it would just involve asking her lots of questions so it shouldn't be a big ordeal. I'm amazed at the technology here. Although the brain is still such a mystery, God has really allowed us to learn a lot about how it works. It makes me all the more amazed and in awe of Him and His creation!

Oh, her fever went down so that's good and as far as the fluid goes - they're still just observing her. Thanks for all the prayers!

What Now?

(David here)
Well last night was incredibly long and sleepless - shock! Brenna has a temperature! It is only 100 but is has gone up from 99.9. They gave her advil (easier to spell) right before they took her temp at 99.9 and in an hour went to 100. They are watching it - for now and in a few hours they will give her tylenol. Her left eye is beginning to swell - I assume trauma from the surgery.

Good news - (or Blessed news I should say), Dr. Clarke, the epileptologist, said he thinks they got enough seizures recorded last night (the first night, when it was to take 4-5 days!) So this is a huge act of God, I believe. So her next surgery is tenatively planned for Monday. So everyone can continue praying for her, but now more specifically for Monday plus the fever to go away!!!!

The surgeon is leaving today and will be gone for a few days, but will be back on Monday for surgery! On the MRI today (procedure after a surgery) they saw fluid, but it is not causing pressure at this time so they aren't too concerned. If the fluid builds then we could quite possible have an extra surgery to remove the leads before the Monday surgery. Several problems arise if this needs arises. 1. Dr. Boop (surgeon) is gone. 2. We want Dr. Boop. 3. The other Dr.(s) that would do it - I am not confident with!!! So PRAY ALSO for the fluid to not cause problems and that the leads don't 'need' to come out before scheduled surgery.

[All the above is informational without the big Dad's heart...the following...Dad's heart]
I knew ahead of time that this wouldn't be a piece of cake. One brain surgery is hard enough, two is too much, three - you think would be just a part of life (ha), four ridiculous and now we are at a point where we could have 'an extra' surgery - what in the world!

She is in a lot of pain! She had a hard time waking up yesterday from the surgery and has been lethargic a lot today. At one point today she was having seizures during her nap that registered on the monitor she is hooked up to, but I didn't know it because she didn't whine in her sleep and I think they didn't manifest themselves as stomach aches! Her hands were shaking one time and she wasn't speaking words that made any sense -- okay that frightened me! Reminded me of her big seizures she had while on protocol. Dr. is now trying to keep her calm (no seizures) and pain free. HEY THAT SOUNDS LIKE A GREAT IDEA!

A good thing is that she is complaining more - good because she is communicating more often and better. She is getting a back ache from laying down in bed so much, her throat is sore from tube down throat and head aches...she's miserable. Oh Lord Jesus, grant her physical peace!

As a father, this is killing me - I can't do anything to take away the pain nor can I speed up the process of recovery. This is where patience is tested at its best (or worst!)

Through all of this though - God has been here for us - praise HIM for that