Tuesday, September 16, 2008
Monday, September 15, 2008
Okay, so we're not still in Colorado, in case you were wondering. We are back at life in Oklahoma although I look at these pictures and think - man, why do vacations have to end?? We did a lot of hiking and fishing. The weather was great. We hiked up to the top of Cottonwood Pass and it snowed on us briefly while were were up there. The kids thought that was awesome! (So did I). They loved throwing snowballs in July! We also took jeeps up to an old mining town called Crystal. We used to camp there as kids, but it's so hard to get there. I actually thought we might end up at the bottom of the mountain in a heap at one point. What an adventure!! But we made it alright and now we have lots of wild memories to recall when our family gets together! We also hiked up to the Alpine Tunnel somewhere above St. Elmo. That was a long hike, but it was so worth it. The Columbine and wildflowers are gorgeous and Bella posed for me next to some. We got to feed the Chipmunks and see some wildlife - but no bears - bummer. We fished at Cottonwood and Chalk lakes. Not to brag, but I (Bettina) caught the biggest fish. :) I think all together we caught about 18 rainbow trout. The kids did more exploring than fishing, but they loved it.
We did come back to our tent one day after a storm had blown through and our sleeping bags were a bit wet. Thankfully, the campground had dryers that we could use. It could have been worse. Overall, we had an exhaustingly good time. Anyone that's ever been tent camping, knows exactly what that means.
We hit the ground runnin when we got back home. Our church had a back to school night where we gave away free school supplies and then the next day started school. All the kids got the teachers they wanted. Jalen is in 5th grade - wow! He has the only male teacher and he really likes him. He's very challenging which will be good for Jalen. Brenna got the teacher that Jalen had last year and she loves her. I'm just so happy that Brenna is in school and is doing so well. She still works a little slower, but is really doing fantastic and making good grades. She's down to only one seizure medicine now. Praise the Lord!!! It makes such a difference in her mood and personality. She's back to her fun, energetic, bubbly self. Bella is in Pre-K. Her teacher goes to our church and of course, Bella loves her. She goes half days most of the time, but they are flexible and she gets to stay all day on special occasions when they have parties or if we are going to be gone or something. She thinks she's such a big girl. She's growing too fast!!
So, now, summer is over and the air is getting cooler. I love summer time, but I'm always excited when Fall gets here. It's such a nice change and I love the cooler temps. God is doing some amazing things in our lives and I just feel such anticipation at what He is going to do next. Our church is experiencing some good changes and exciting things are happening. I just sometimes sit back in awe and lift my hands in thanksgiving for all He's done. This morning, we left town early, around 7, to head back to Memphis for check ups. It was so awesome to see the full moon setting in the west and the sky streaked with color as the sun rose in the east. What an amazing God we love and serve!
Yes, we are back in Memphis. Today, Brenna saw Dr. Clarke and he said she's doing fantastic. Of course we knew that. He'd like to leave her on the one seizure med for about a year or so. That's normal procedure - well, actually two years is normal - but since she's doing so well, he'd consider taking her off at one year. So, we can handle that. And he doesn't need to see her again until March. Tomorrow, she has labwork and then an MRI. We'll wait around for results and see her oncologist, Dr. Gajjar, in E clinic. Then we'll head over to the endocrine people and talk about her thyroid and growth issues. She's still not putting on weight, really. And I'm not sure that she's grown like she should - so we'll find out all that stuff tomorrow. But, in light of what she's been through, I think this will be a piece of cake.
Monday, July 28, 2008
Brenna has been doing so great! We actually made a super quick trip to memphis a week and a half ago for a check up. Dr. Clarke and Dr. Boop both wanted to see her and check her out to see how she was doing. Of course, she's doing very well and they were both pleased. She is completely off of one of her seizure meds and they are slowly weining her off of another. So she's just on two now. Hurray!! You can really tell the difference too! She's much more alert and bright eyed.
This past week we've been just enjoying life. We went swimming several times and we went to see the movie Wall-e. It's been over a year that she was having seizures so it's like we're learning what normal life is again. Although, I'm not sure we'll ever be normal. Who is??
We are just loving life right now and making the most of every opportunity. Well, we've been on the road for two hours and Bella needs to stop already so I'll close for now.
Thursday, July 10, 2008
We are home now and loving it! We had a great time at Grandma and Grandpa's for the 4th. Brenna even rode the pony (with me) for a little while. She enjoyed watching the fireworks and even lit a few but mostly sat on Grandpa's lap as a spectator. We didn't really have to do much of anything - but just enjoy being together and being out of the hospital and past the surgeries.
We drove home Saturday morning. It was so good to be home!! Sunday was fantastic as we were able to go and be with our church family - praising and worshiping God together. Brenna wanted to go, but at the same time was very tired. So, we went and she laid on my lap during daddy's preachin.
Jalen has been having hives. They actually began before we left for Memphis but have gotten steadily worse. They really flared up big time on the day of Brenna's second surgery. I've ruled out food allergies, but don't know if it's an outdoor allergy or if it's just stress. David finally took him to the doctor Tuesday and she put him on steroids to get them stopped. He also is taking benadryl every four hours. It looks like he's been attacked by giant mosquitoes when they flare up and he's just been miserable. Hopefully, the steroids will get them under control. If it's stress related, hopefully, now that we're home and Brenna is doing well, they will go away.
Other than a few headaches - Brenna's been doing amazingly well. Her incision itches a lot and that bothers her, but she's not complained too much about it. The part that hurts the most is right above her ear. I wonder if that will bother her and keep her from wanting to wear sunglasses and even regular glasses if she needs them some day. I had to cut off part of her hair in places where the blood and gunk had matted it terribly. It just wasn't worth trying to comb it out. I did not want to cause her any pain just to comb her hair. Eventually - I'll trim it all so that the part they shaved can catch up. I really try to not focus on that though. Whether she has hair or doesn't have hair -she's BEAUTIFUL! I want my kids to know that it's their character and how they live life and love Jesus and love people that makes them beautiful. And she knows that. I try to make her wear a bandana just to protect her stitches from dirt and the sun, but if we are inside -she's totally comfortable taking it off - even when people gawk. I'm so thankful for her and what she's teaching me.
The kids and I are getting ready to paint Bella's room. That's something that we've put off for over a year, just because life has been so crazy. Hopefully, we'll get more paint on the walls than on ourselves, but we're still going to have fun and enjoy every minute of it.:)
We are praising the Lord, daily, for what He has done but mainly what He continues to do every day in our lives. I see His hand every time I look at my kids, my husband, my family and church family. He is Living and Moving and Working and I am excited to serve and praise His Name!
Thursday, July 3, 2008
It will be a fantastic freedom celebration for us. Of course, the freedom that's fresh on our minds is freedom from the hospital and Brenna's freedom from seizures!! We praise God for the freedom we have in our country too. But, mostly the freedom that we have through Jesus Christ, our Savior and Redeemer. We are free indeed and as the singer, Mandesa, puts it, He has taken the "shackles off our feet so we can dance!" And the Logsdon family has already been dancin today!!
Once again, we are truly grateful for all of you who have prayed us through another battle. Thank you, thank you, thank you. God be praised!!
Wednesday, July 2, 2008
Brenna started out early this morning with painting a model horse. Then she ate some breakfast - Fruitloops (the breakfast of champions) - and then we did some puzzles while dad was trying to will himself awake. Then we went for a short walk down the hallway and back to get the blood pumpin. The physical therapist had said to try and walk at least 3 times a day. Dr. Clarke came in and said that she looks fantastic and he would start decreasing one of her seizure meds. He said that it's a possibility we could go home before the weekend is up!!
A speech therapist came in to check on her. She's having a little trouble remembering some words. She said it's normal for a person who has gone through brain surgery like Brenna has. She will bring by some work-sheets for us to do with her to help with the memory thing. Hopefully, with repetition, it will be easily overcome. Around 11:00, Jalen and Bella and the grandparents showed up and we all went down to the lobby for a firestation demonstration. Brenna even felt up for going out to see the firetrucks. The picture is of the three of them inside the firetruck.
She ate scrambled eggs and toast for lunch and while the grandparents were here, David and I went down to the cafeteria and ate lunch together. Take away the hospital smell, the hospital food, the doctors and nurses all around, and the extreme lines of fatigue on our faces and you could almost call it a date!! :)
The kids played a little in the room before the grandparents and Jalen and Bella hit the road back home. We gave Jalen some money to buy fireworks to save for Brenna so that she can shoot some when we get home, whenever that may be. We said our goodbyes and gave lots of hugs and kisses. After they left, Brenna kind of got down again. She loves her MaMaw and her Grandma and Grandpa, and her brother and sister! It's just hard to keep Jalen and Bella entertained in a little hospital room. They did great, but I know they were starting to go stir crazy. Of course, stir crazy is about how David and I feel too most of the time- just without the "stir" part.
Habitat for Hope volunteers brought us dinner tonight and then we got a surprise visit from a dear couple from back home in OK. They had been out east on a vacation and stopped by to see Brenna on their way back home. They brought her a huge pink bear that's about bigger than she is. It was really sweet of them to come by. They really love Brenna and have prayed for her healing for a long time.
Dr. Boop never made it to see us today, but the nurses said they thought he got stuck in surgery. We totally understand. But, we think that he and Dr. Clarke have to decide together about when we can return home. I'm anxious to get home, but I don't want to leave before they are absolutely certain she's fit to go. So, if that means staying a few more days, I can handle it.
She's not had to take very much pain medicine today. That amazes me! She's had half of her brain opened up and exposed and all she's taking for pain is Tylenol with Codeine and Ibuprofen! Wow - and I thought I had a high pain tolerance! God has definitely been her Strength! (And ours). I'll try to remember that the next time I complain about a headache!
Tuesday, July 1, 2008
AFter the surgery, the family kept taking turns visiting Brenna in the ICU (only 2 at a time!) When my in-laws were in the first time I noticed my father-in-law was upset. Brenna wasn't coherent and was in pain. Later as they were headed back to Habitat for Hope for the night, they stopped in one last time for the night. As they turned to see her, she was on my cell phone to her cousin, Brooklyn. I saw my father-in-law smile really big and say to my mother-in-law, "SHE'S ON THE PHONE!!!" I had asked her if she wanted to call Brooklyn to thank the Presko's for the balloon and stuff horse! It was so good to see her able to do so so early after surgery. She came out of surgery and was in ICU by 12:30 p.m. and on the phone with her cousin at 8! Two hours earlier I was having a hard time wondering if we should have had the surgery because of the pain she was in and her not being as alert as I wanted!
After everyone left for the evening, Bettina pulled out her cell phone/MP3 player and the three of us listened to Ray Charles (okay, Brenna and I sang - 'Hit the road Jack!' and many others) I couldn't beleive it. I tried to sing and not cry, because here she was - the Brenna I knew peaking through the sedation she was still recovering from. It was wonderful. She would keep her eyes shut and sing barely staying awake. Then when each song was over she would open her eyes enough to start another song. I felt better - and obviously and most importantly she was too!
Bettina and I took shifts in the ICU last night. Each surgery we stay with her so she isn't alone. There have been so many kids that we have seen in ICUs with parents hardly around. I don't know everyone's situations, but I do know that we don't feel right leaving her alone. We also beleive it helps her overall health knowing we are there - afterall (as we find out more and more through Brenna's Battle) the mind is a incredibly powerful thing. Since I hadn't eaten dinner I grabbed a burger and Dr. Pepper (I was off pop until lately!) at 10:30 p.m. and then I stayed with Brenna while Bettina went to rest/sleep upstairs in Brenna's hosptial room. Bettina came back in around 3 a.m. Then I went to sleep til 7 a.m. The ICU rules are from 6:30 - 7:30 all parents are asked to leave for shift changes both a.m. and p.m. So after I got up I went down just in time to go back in around 7:30. When I left Brenna a 3 a.m. she had only been asleep for an hour and a half. From 11 p.m. to 1:30 a.m. she couldn't sleep. I really didn't understand that - I thought to myself - "You just had brain surgery if it were me I would sleep til Friday!" She was slow in thinking and remembering, so she kept trying to understand why Jalen and Bella were away (at Habitat for Hope) sleeping. I told her - 'because it's 1 in the morning!' She finally feel asleep around 1:30 and I left her in a condition of fog! (Her due to surgery - me due to lack of sleep)
So when I walked in at 7 a.m. I saw her looking around and she smiled at me first thing. (Just in case you can't read between the lines - when your daughter smiles at you as a dad it is powerful. When it is after brain surgery #4 it is indescribable!) I can't remember a time where I enjoyed talking to her and breathing in her bad breath and enjoyed it so much!
She had a post-surgery MRI (routine)...at 11:40ish - she was scheduled to go in at 8. So I was cranky mostly due to lack of sleep, but also added to the bonus of waiting over 3 and a half hours we hadn't eaten because Brenna couldn't have anything. I was going nuts waiting (Lord, another lesson on patience!)
She "passed" her walking and talking tests that the physical therapists had her do today. She was eating a little and going to the bathroom (a biggie in the Logsdon family, yet it wasn't THE BIGGIE - hope that's clear. ha ha ha) She is watching a movie about to go to sleep now - So I will go so I can turn off the TV and stuff, but before I do I will repeat once more a very very important message...God is good, all the time!!! Thank you, LORD, for your goodness!
Brenna and her friend Bella Horrocks from Habitat for Hope. They're buddies.
Eating a popsicle in ICU. It was yummy.
Sitting on Grandpa's lap listening to the occupational therapist. We're out of ICU in a room on the 5th floor. She had an MRI this morning and is feeling much better. She even ate a little lunch - half a hot dog and a chocolate swiss cake roll. We're just so thankful that she's able to talk and walk a little and she doesn't have those wires hanging out of her head anymore. God is Good!!
Monday, June 30, 2008
Will update more later - God is good, all the time!
Thanks for all the prayers...keep praying she will have a rough couple of days. She is quite the trooper!
God is an awesome and amazing God. HIS grace and forgiveness are as shocking as HIS healing power!
Sunday, June 29, 2008
Saturday, June 28, 2008
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!
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.
Friday, June 27, 2008
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.
Thursday, June 26, 2008
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!
Tuesday, June 24, 2008
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
They came in and took blood early this morning. I almost came a little unraveled when the lab tech was going to stick her. She already had an iv in each hand and one of them wasn't being used. I asked her why she couldn't just take blood out of the existing iv?? She said she would ask. Then the nurse came in and said they normally couldn't do that. I was pretty irritated. But just as the lady was about to put the needle in her arm, a nurse practitioner came in and said to wait. She looked at the iv and said it would be no problem to pull blood from it. She saved the day! I was so thankful. I know Brenna is tough, but come on - give her a break!!
She's still very lethargic. She responds only when we really prod her and then she goes back to sleep very quickly. She had an MRI that is routine for post-op. They didn't sedate her because she's still so sleepy. She did well. I was kind of worried that she might have a seizure during it, but she didn't. They saw on the MRI that she has fluid collecting over the electrode grid, but it's not causing any pressure so they're not concerned yet.
Dr. Clarke came in and said that since she had so many seizures last night, he thinks they've collected enough to get all the information that they need. Praise God!! I think everybody was praying for seizures. SO, if all goes according to schedule, he's going to give her more medication to calm down the seizures and help her brain relax a bit and then tomorrow he'll map out the location of her speech (they mapped out her movement earlier). What they hope is that they'll have everything put together so that Monday they can do the surgery. That's our hope too! I'm just so thankful that she's had seizures. I was worried that she might not have any at first so it would make us be in here longer. God heard our prayers!
She opened her eyes enough to meet the youth minister from East Win when he came by to see her. They also had a golden retriever on the floor who came by to visit her and she woke long enough for him to lick her hand. I convinced her to try some chicken noodle soup but all she ate was one noodle. She said it didn't taste good. She wanted to watch the disney channel but stayed awake for about five minutes and now she's snoring again. But, at least we've seen progress. I'm feeling much better now that I've seen her awake a bit more. But, still hate this whole process and watching my baby in pain. I don't like to wish the days away, but I'm longing for this to be over quickly.
I'm confident that God has her in His hand and I know undoubtedly that His hand is what I'm clinging to so we can make it through. Thanks for your continued prayers.
Monday, June 23, 2008
Anyway, we got checked in and went right up to a room on the same-day surgery floor. The nurse came in and took blood and vitals, etc. By 7:00am they took us back to the "Bunny" room. It's the room where the patients get to pick out a new toy of their choice and then after surgery they can have it. We proceed through the bunny room and into the surgery waiting area. As soon as we got there, Dr. Boop met us. He told us that they had an emergency and he was going to have to operate on a boy and we'd have to be delayed. He was very kind and of course, we understood. If ours was an emergency, we'd want to have priority too. So, we went back to the room and waited........and waited........and waited some more. Brenna was pretty entertaining at first. Mamaw was there and some dear friends from Cleveland. Also, the music minister from East Win came. She was singing and dancing for a while, but then she got frustrated with the waiting and was bummed out. Finally, at about 11:15am, they called us back again. She got to pick out a second toy in the bunny room and then we went in and Dr. Boop showed us the picture of her brain. The anesthesiologist met with us and said they could possibly take out her loose tooth during surgery. Brenna was very happy about that.
Finally, we had to let her go. She took her stuffed dog and horse with her and practically skipped down the hall to surgery. As upbeat as she was, my heart was heavy watching her go. I'm familiar with that feeling because we've done it a few times, but it doesn't get any easier. It's that horrible, helpless feeling that makes you almost nauseous when they close the door behind her.
So, we went back to the room to wait......and wait.........and then we went down to eat lunch and then we waited........and waited some more. Of course they called every hour. They had said the surgery could take up to 3 or 4 hours, but it only took about an hour and a half. But then of course they had to close her up and then she went to recovery. They took her to the PICU for a while because her oxygen levels were low. But she didn't have to stay there. Finally at about 5:00pm, they called and said that they were going to take her up to a room on the EMU (epilepsy monitoring unit) and we could go up and wait for her. It was so good to finally see her be wheeled into the room where we could finally be with her and touch her. She was totally out of it, though. It took them about an hour to hook the wires up to the monitoring system that were coming out of her head. Each electrode that's on/in her brain has 16 or more hair-like wires that are twisted inside of one bigger wire. She has countless wires coming out of her head. It blows my mind. They put the electrodes in several different locations on the top and bottom of her brain and even inside where the tumor bed is. Her head is wrapped up in a turban style bandage. She's responded a little when we asked her to squeeze our hands or wiggle her toes, but she's still sleeping very soundly. One of the other doctors who was in the surgery came in and kind of made me a little nervous because he's concerned about her not waking up yet. But, Dr. Clarke - her epileptologist, who was also in the surgery, called the room and talked to David. He said that he thinks she's just in real need of some rest. He didn't want us to be overly concerned. That's easier said than done, but I trust him.
So, we're waiting for her to wake up and hoping she does soon. She's snoring pretty well right now. I hope she gets the rest she needs to recover and then wakes up when she's ready - which is hopefully within the next hour or so. If she doesn't wake up by 9:00pm, they'll probably do a CT scan to check for bleeding. We're hopeful it won't come to that.
Oh, and, they did remove her loose tooth, so she will be getting a visit from the tooth fairy tonight. (If the tooth fairy remembers and can get herself out of bed.)
Thursday, June 19, 2008
Brenna is not nervous at all. She's ready. I'm ready too, but just ready for it to be over! I thank you all for praying for our little girl. With thanksgiving for what God is going to do, we are presenting our requests to Him so that the peace of God which is beyond our understanding will guard our hearts and minds in Christ Jesus!!
Thursday, June 12, 2008
We saw once again today how Brenna can use her blue eyes to wrap people around her finger. We went in for MRI at 6:45 this morning. Which, really is a good thing. The earlier the better for us. Anyway, when they took her back to sedation, David went with her because I'm kind of afraid to get anywhere close to a giant magnet with the metal in my leg. :) She didn't have an iv in, so they were going to put one in, but she asked if she could be put to sleep with the "gas" first and then have them put the iv in. Normally, they don't do that, but David said the anesthesiologist basically said, "Whatever you want, Princess." That was really nice, especially after they had goofed up the first MRI schedule.
So after the MRI and she woke up in recovery, we went back to the Grizzlies House to pack up. We then went to our meeting with the neurosurgeon. His name is Dr. Boop, which is a little comical, but he's a great guy - very compassionate and takes time to explain things. He went over the procedure again with us and when we asked him he said if it were his daughter and the meds weren't working, he wouldn't hesitate a second to do the surgery. When you think of all the side effects of the seizure meds, it's pretty obvious that we can't leave her on them long term. Her quality of life will be so much better if we can get her off those meds and stop her from having these seizures. So we talked it over and decided that this is something that we need to do. Brenna agreed. Dr. Gajjar came in and also confirmed that he thought the surgery would be the best thing.
Now, am I excited about it??? No. Actually, I dread it. But, I feel at peace with our decision and confident that this is the road we're supposed to travel. It will probably be a two week ordeal, but the risks are relatively the same as with her first two brain surgeries. The director of the neurosurgery dept. will probably call tomorrow or next week to let us know the exact date we are to come, but it will probably be around the 23rd of June. That is when Dr. Clarke and Dr. Boop will both be available.
We continue to ask for your prayers as this day will come even quicker than we think. I know that God will use these doctors to heal our little girl's brain, but it's hard to think about them cutting into it for the third time.
I can't help but think that God has led David to preach on the subject of peace for such a time as this. He is King and sits enthroned over the flood and He blesses His people with peace. Thank You, Lord.
I think that I'm starting to get the idea that our suburban just likes Memphis and wants to stay. I mean, it's done everything possible to make us leave it here - flat tire, broken belts, getting stolen, sticking ignition switch. It obviously wants to stay here and I think we're about ready to let it.
Anyway, the days have been kind of long as far as testing goes. Not because Brenna's had a lot of tests, but just the opposite. She only had one thing Monday, two on Tuesday and yesterday. So it kind of seems to be dragging on forever. We met with Dr. Clarke yesterday and had a good visit. He definitely recommends the surgery. He said after all the meds we've tried, our chances of ever getting the seizures under control with medication only are like 5%. Whereas, with surgery, the percentage goes up to more than 70%. Apparently it's a surgery they do several times a week so it's not a new thing.
Brenna had her MRI this morning and at 11:30 we'll go to meet with her neurosurgeon that did her last surgery. He's a great guy and will explain in detail what the surgery would entail. Then, we'll make our decision. We will also get the results of her scans and then the last thing of the day will be endocrine. We might not finish up with appointments until after 3:00, but we're still going to hit the road afterwards. There's no place like home and we would like to get there today.
I'll post our decision and scan results also, later on. Thanks for all the prayers!
Monday, June 9, 2008
We arrived here last night a little before 10:00. We had to be in Assessment Triage at 7:45am this morning. Brenna was scheduled for an MRI at 8:45, so she couldn't eat or drink anything. So we got to the new CHili's Care Center - which is a new building at St. Jude that Chili's donated. When we checked in, we found out that they had moved us up to 7:15am - oops, but they were running behind so it didn't matter. They got her vein on the first poke and then left the iv in because she was to be sedated for the MRI. We went on and signed in for MRI....................almost three hours later we find out that they failed to tell us the MRI machine that they use on Brenna was broken and they rescheduled her MRI for THursday. I knew they were running behind because of all the people waiting, but I was a bit frustrated to find out that they hadn't told us we were rescheduled. They took her iv out and we decided to go to lunch since we had all skipped breakfast.
Our plans have changed a bit now. We hoped to go home on Wednesday after our meeting with the docs, but it looks like it will be late Thursday or even Friday now. Oh well, I guess we're used to our plans being changed. I think we've come to expect it.
Right now, our plan is to go see Kung Fu Panda at the Peabody Place. We need to go have a few laughs and we might as well make the best of it.
Saturday, May 17, 2008
Her actual birthday was the 12th. We had two kittens delivered on Monday. She was thrilled. She's wanted a kitten for a while, ever since our last one met an untimely demise. :) We also got a pygmy goat a couple weeks ago. He's a doll. We bought him a dog harness, so we can tie him out and he can eat the brush and weeds around our property. But, it will be a while before that happens. We have to do a little training first.
Spring is a happenin' season for us because of all our birthdays, on top of graduations and end of the school year parties and field trips. We also have a wedding next weekend that David is doing in Topeka of a couple that was in our youth group there. Then the week after that is my mom and dad's 40th anniversary celebration. Whew!! After that, on June 9th we go back to Memphis. It will be time again for her three month check up, but also we are going to sit down with the epileptologist and surgeon and talk about surgery. Our nurse practitioner called last week and said that they really think she's a candidate for surgery based on the test results from the MEG. I knew that's what they've been looking for, but it's kind of overwhelming to hear. I mean, I need to sit down with the docs and have them look me in the eye and tell me that this is our last option for fixing these seizures and it's more than just a 50-50 chance of working. I just need to talk to them face to face. They told me over the phone what the procedure would be, but I need to go over it again. It may be something that they do with expertise, but it's still cutting into my child's brain. We've been asking people just to pray that we have wisdom in knowing what the right decision is. Of course, our ultimate desire is for her supernatural healing by the power of God's hand, but if He says no, then we need to have wisdom is knowing what to do next.
I absolutely hate making a decision like this. Of course, we've had to decide twice before to do brain surgery, but it was a little different. Before, it was to remove the cancer. That was a life/death decision. This isn't. It's more of a quality of life kind of decision. She's not probably going to die from having these seizures. But, she's not able to function or be a normal kid either. Besides that, they're painful and frustrating for her. She got pretty tired today and she's had five seizures and the day's not over. And the meds are not working. Even if they were working somewhat, the list of side effects that goes with each med is frightening. Besides, they also make her an emotional basket-case. God help us to know what to do.
We haven't gotten any results back yet about the growth hormone testing they did when we were there before. They said it could take four to six weeks. But, they did call and tell me her thyroid levels were still off so they increased her thyroid meds.
She's such a trooper. We've talked a little with her about the possibility of surgery. She seems to be okay with it, as long as it helps her get better. I wish I were so readily accepting of it.
Tuesday, April 22, 2008
Yesterday, Monday, we checked in at Le Bonheur for Brenna's testing. She was scheduled for the MEG. It's the new test that they wanted to do so that they could see if she's a candidate for surgery. She was the 21st patient to use it. Apparently, there are six or seven in the US, but only a couple do children. Thankfully, one of them is here. They hooked up the the leads to her head, kind of like the EEG - which Brenna wasn't crazy about. Then they took her into a room where this machine came down over her head. I couldn't stay in the room with her since it's magnetized, because of my leg. But there was a camera in the room so I could watch her. It is supposed to be so much more detailed and advanced that they will be able to locate all the areas that they don't want to touch, and pinpoint the area that they need to fix. Anyway, it was a really interesting test. I hope that it really shows them what they need to do. She fell asleep after about five minutes and was snoring like grandpa. (Ha ha) Then, they put leads on her right index finger and her right big toe to determine where those areas were exactly in the brain and then also asked her questions to show where her language was located. Now, Dr. Clark, her epileptologist and Dr. Boop, her neurosurgeon, will look at the results and determine what our plan of attack will be. I think they will know something by Friday. I hope. I'm still not really sure about the surgery. We're doing a lot of praying and the surgeon will have to be pretty convincing for us to go that route.
Today, we had to go back to Le Bonheur for her growth hormone deficiency test. It wasn't too bad. They gave her medicine through the IV and and then took her blood every thirty minutes. The medicine was supposed to stimulate the pituitary gland to produce growth hormone and then they were going to check the levels in her blood. They told me it could make her nauseated, so they gave her a barf bag, but, she didn't get sick until we got back to the Grizzlies House. She only threw up a couple of times, thankfully.
So, we just chilled out in the room for the afternoon. We all needed a nap. I've been battling allergies for about a week now and am miserable. I think it's developed into bronchitis or something. I feel awful. I told David to make me a Dr. appointment for when we get back tomorrow.
It's been good for Brenna that her cousin came this time. They're pretty good buddies and it's helped keep her mind off of things.
My sister told me how visiting St. Jude makes her so thankful. Everyone should try to visit a hospital like St. Jude at least once because it puts things into perspective. Daily troubles don't seem quite as bad when you come here. It makes you appreciate so much more how God blesses you, even through trials. Even now, coming back, I can honestly thank God for what He has done and given to our family. I'm amazed at His faithfulness. Every morning His mercy is new and I will continue to praise HIM.
We'll hit the road early tomorrow morning. I'm anxious to get back and see David and the kids. Bella has had a hard time with me being gone for some reason. Last night, she ended up in bed with Daddy. I'm sure he's ready for us to be back too. :)
Monday, April 7, 2008
We go to St. Jude on the 21st. They are going to do growth hormone deficiency testing since she's not growing like they think she should. I'm really not concerned about that right now. The most important thing is getting these seizures under control. I'm hoping to hear from the neurology clinic this week to see if they've got her scheduled for that magnaencephalogram test also. I really want to get that done so we can know what we're going to do. I talked with them last week and they asked me if they could share Brenna's case at an Epilepsy conference because her type of seizures are so rare. I said that would be great, especially if it helps find a solution and a cure.
Jalen's birthday is tomorrow. He is going to be ten!! Double digits - I feel so old. He's having a sleepover this weekend with three of his buddies. It will be fun. They might camp out in our tent if the weather cooperates. Of course, Jalen's a big chicken, so I don't know if they will make it all night out in a tent by themselves. We'll see. :)
Friday, March 28, 2008
The Wednesday before Easter, me and the kids decided to go to my parents. After all, it was spring break and all we'd done is sit at home because of sickness. So, we had a couple of nice days of weather forecasted, and we hit the road. It was nice to be on the farm. Brenna and Bella road the ponies quite a bit, and Jalen got to ride the four wheeler and hang out with the cousins. We only spent one night, but it was a lot of fun. We also colored eggs and hunted them.
We got back Thursday night and I woke up with fever on Friday morning. I felt terrible!! I think I had a sinus infection on top of whatever Jalen had. Thankfully, I was able to take enough meds to keep my fever down so I could go to church Sunday. That afternoon, I just crashed on the couch. I hadn't really had the time to be sick before that. We had a lot to do to prepare for Sunday. It wasn't a great time to be sick. But, is there ever a good time for that??
Brenna has been doing okay. Her seizures haven't been as numerous, so I thought we were on the right track. She caught the virus we all had and woke up Monday morning with fever. So, she didn't get to go to school until Wednesday. But, I got a call from her teacher at 11:00, and she'd had five seizures. I don't understand it. She loves school and is such a social butterfly. But, for some reason, being there brings on seizures. Maybe it's over-stimulization. I guess we might try to do a home bound teacher program for the rest of the year. St. Jude wants us to come back in April and do a special test at LeBonheur. It's called a Magna-Encephalagram or something like that and it's a real high tech EEG/MRI type machine. Apparently, it's brand new and there are only two in the States. The other is in Texas. This test would map out her brain and show exactly what area to take out if they decide surgery is our only option. I'm really just tired of the whole thing. The medicine she's on is making her so emotional that she can be unbearable. I know that it's not her fault, but I lose my patience sometimes. She's not sleeping well either. It usually takes one to two hours for her to fall asleep at night. That's tough because she needs her sleep.
We finished up Spring break by working on Jalen's Science Fair project. He got frustrated a couple of times, but worked hard on it. He was really proud of himself when he came home yesterday with a third place ribbon! I was pretty proud too.
Yesterday, it was 80 degrees here. Today it's in the 50's. But, everything is greenin' up. I'm so excited for Spring to be here. I love the feel of the warm sunshine. Yesterday the girls helped me plant a few flowers. Bella found some worms and fed them to the chickens. She said that her chicken said thank you. I don't doubt it. :)
Sunday, March 16, 2008
A friend of ours, whose son also has cancer, brought us dinner tonight when she heard I was home with sick kids. What a blessing!! The last thing I really want to do tonight is cook! I'm sure she can relate!
Please say a special prayer for Brenna. She is in a lot of pain. Hopefully, when I call the doc tomorrow, they will know what we should do and also have some plan of attack for the seizures as well. Dare I hope?
Saturday, March 15, 2008
The meeting with the epileptologist didn't go exactly as I had planned. There must have been a break down in communication between St. Jude and LeBonheur, because we were assuming Dr. Clark would have all the information from the MRI's and tell us what we were going to do. But, he still didn't have the scans. So he just checked her out thoroughly and adjusted her meds again and told us they'd call us next week with a gameplan. I was very disappointed. It's not like we just waited all week to see what kind of action we were going to take to get on top of things. The strange thing is, she hasn't had a seizure the entire week while we were there. She's just been so confident that they were going to fix her. Dr. Clark said that worry and stress can bring them on, so I guess since we were getting her checked out, she wasn't so stressed out. I don't know. I asked him about school, because she seems to have more at school. He said he'd like to keep her as normal as possible, so he'd recommend keeping her in school instead of doing a homebound program. Next week is spring break, so we have a little time before we have to worry about that, I guess.
So, after meeting with the doc, we went back to e clinic to get her LP results. All clear! Praise the Lord! Then we met a friend of ours for lunch at Huey's downtown. They have great burgers and Brenna likes it because you can shoot toothpicks through your straw and stick them in the ceiling. Her lungs aren't quite powerful enough to make it to the ceiling, but they hit the ceiling fan a few times and flew onto other people's tables. Nobody got upset, I guess they just expect it to happen when you eat there. I don't mind the toothpicks so much as the flying slobber that follows them.
Brenna's back has been really sore since her LP. They actually had to stick her three times to get enough fluid. That's very unusual for her. Normally there's only one poke and her fluid gushes out. I thought that was strange. But nobody seemed concerned. Her back is more sore than usual this time. It's no wonder.
The endocrine people increased her thyroid meds this time. Her numbers were still off, so they felt they needed to increase it. And since she hasn't grown adequately over the past year, they want to bring us back in a month or so and do growth hormone deficiency testing. And, since she's on seizure medication, they have to do the test at LeBonheur. They're supposed to call us with that schedule.
I was supposed to go to the Extraordinary Women Conference here in Tulsa this morning with friends. I was looking forward to going. It was supposed to be really good. But when I got out of bed this morning to give Brenna her meds at 5:00, I was so tired. You know, that shaky, nauseous kind of tired? I didn't think I could make it all day. Of course, Jalen ran fever last night, so we were up and down with him. It's always fun to come home to sick kids. He sleepwalks and moans a lot when he has a fever, so we didn't sleep well.
My mom left about an hour ago to go home. She got to take Bella to the doctor on Tuesday, while we were gone. She had pink eye and impetigo. I think every time we go to memphis with Brenna, one of the other kids comes down with something. This time it was both of them. I may have to spend Palm Sunday at home. We'll see how Jalen is feeling the rest of the day.
Even though we came home to sick kids and we don't have all the answers for Brenna's seizures, there is reason to praise. Psalm 34:1-3 - I will extol the Lord at all times; His praise will always be on my lips. My soul will boast in the Lord; let the afflicted hear and rejoice. Glorify the Lord with me; let us exalt His name together.
Thanks to all who prayed and continue to pray for our family. We thank God for you.
Thursday, March 13, 2008
As far as yesterday went, She had her feet fitted for inserts that will fit in her shoes. We won't ge them until we get home (They will mail them to us!) She has not lost any more hearing - thank the Lord. They did notice a 'possible' problem with one of her ears - the 'air test' was showing that there was more movement in one of her eardrums and the other was normal. We met with the ENT specialist - who is only there twice a week for half days and he was just finished with his appointments and we went right in. He said that they extra movement was nothing. He also commented on the flexibility is from having tubes put in and one side grew back normal and the other didn't but it doesn't do anything except show that there is more movement. Anyone else confused?
We also saw the Endocrinologist (growth study people) Brenna hasn't grown very much in height or in bone age (she is only 7 and ten/twelfths years old) Again - anyone else confused? How in the world can my bones not be the same age as my body?
We did get to have lunch with Jeff and Julie - minister and his wife from East Win Christian Church, at Big Foot (at Brenna's request - both place and friends!) Of course we had to end with the traditional Smores at the table. As for now we wait for the morning and pack up, head over to the 'other' hospital and then have a quick lunch with another couple from East Win - who had a baby that we have not seen yet. Then we will head back for home - Cleveland, Oklahoma. We are ready to be home, but know we will hit the ground running there since Easter is just a little over a week away! Thank you all for your prayers and support. God continues to take care of us and bless us incredibly. I am amazed that he has kept us in HIS care throughout our journey. Once again HE has proven HIS love to us!
Tuesday, March 11, 2008
Tomorrow, we go to the endocrine clinic and she gets her cortisol levels tested. She also will have a pulmonary function test (lungs) and an echo EKG (heart). She's going to get fitted with inserts for her shoes to help strengthen her ankles and arches. One of the chemos she got on treatment, weakens her muscles and ligaments. But they think these will help her regain strength. She really walks on the inside of her feet. I wonder if they'll want her to wear flip flops this summer because they have no support whatsoever.
Anyway, another day, another test.
Oh yeah, clear scans were the best birthday gift I could get!! Praise You God!
Thursday, March 6, 2008
Sunday, March 2, 2008
Wednesday, February 20, 2008
Monday, February 11, 2008
We have determined to do whatever is necessary - afterall, what should a parent do other than that?
Bettina is now walking!!! The doctor told her (by phone) that she can start walking without crutches - she's excited just a little :) We go back to Memphis the week of March 9th -14th. They will test her as they normally would, but she has just as many tests added to her due to the seizures. So this stay will be a full week, not just a few days. Again - whatever it takes. God has carried us this far - HE's not one to abandon HIS own. We will trust in HIM and find contentment with HIM and HIM alone!