Friday, October 31, 2008
First, we realized I am a People Pleaser. I am super independent and so I've never noticed how much I try to please people. I like to do everything on my own. However, having to depend on so many people over the last year or so, I've learned that I do care what people think. I don't like to call people to ask for rides to the grocery store because I don't want to take too long, use up too much of their time, etc., but I want to save money for our family and it's my big outing for the week. So, that has been very hard for me. I just don't like to ask for anything because I don't want to inconvenience anyone.
How does that apply to this? I have felt a complete peace about moving forward with this surgery. However, B's b-day is on Thursday and I've kept the poor man from working most of the year. Mom has sacrificed a ton of work and who wants her daughter's head cut into....? I felt like they deserved more. So, I was trying to be patient and wait. I was doing what I thought they wanted. I was getting more and more uncomfortable about waiting, though. So, Ben and I spent some time in prayer about it and talking about it. I was also challenged by another sister in the Lord that had the surgery earlier this year.
We said, "Let's do it." The doc called and I think he expected me to say, "no." He said that they had not discussed it at their surgical meeting and so he was going to have to go back and have a meeting with the team to discuss it. He then said he was going to have to call back. So, when he called back later this evening, he said they felt it was too risky (infection risk) to move forward with the full procedure because it would require so many surgeries to find the point of origin (a lot more details, but that's the short version).
Therefore, I will check in sometime on Monday. They will perform a test on Monday or Tuesday called the WADA. Then, on Wednesday, they will drill a few holes in my head and implant sub-dural strips (electrodes). They are hoping that will give them enough information to then move forward with the intended surgery in January, yet with less risk.
Sorry I have rambled so much, but I've tried to type this amongst the door bell ringing every few seconds with frightening creatures and princesses at the door. I'll try to share more details that make more sense as I begin to understand them.
More than anything, thank you for your prayers as I have such a peace about this and feel that the Lord has guided each step. We'll try to keep you updated...
We need to make a decision in a few minutes. The doctor is going to call back at around 3p to get our decision.
Do I have surgery starting Monday?
Do I wait until January 26th?
If I wait, we will be trying a few more meds and there is a 5-10% chance they might work, but they don't carry the risk of surgery.
If I go forward with surgery, there is a 50-60% chance it might work and there are risks involved.
I am still having seizures all the time. It is so annoying. The doc has said the ball is in my court. He would like for me to wait and try the meds because of the risks that come with surgery, but he also understands if I don't want to wait.
So, please pray that the Lord will provide a peace and answer for us.
Wednesday, October 29, 2008
Tuesday, October 28, 2008
Let's back track to Saturday. Day 2 of the new med. I woke up feeling a little weird, but nothing too out of the ordinary. Then, while in the shower, it felt like I was starting to have a seizure. However, it never progressed to a complete seizure (as I would define it). However, it never backed down either. I spent the next hour plus feeling super sick, like a seizure was happening, but not really. How vague was that? Anyway, B put a call into the emergency line for the doc because I could barely move. They said they thought I was probably having a withdrawal seizure from stopping the other med so abruptly. The longest seizure I've ever had is about five minutes. So, having one that lasted over an hour isn't good as far as damage done to the brain.
If it had lasted any longer, they wanted me to take some additional meds to try to stop it, but it stopped after a little over an hour. Good thing that it did because Mom and I had promised Congressman Hall that we would help with an event at his house.
It was a fundraising event for the election and Buzz Aldrin was one of the guests/the guest of honor. Not being alive in 1969 when Buzz Aldrin was one of the first two men (Neil Armstrong being the other) to step on the moon, I don't think I went in to the event with the appreciation for him that I left with after the event. What an honor to meet this man that made such a mark in history. I have had a great deal of interest in researching Apollo 11 since this weekend. There are a lot more fun little stories from the day that I want to tell, but don't want to take up too much space here.
Below is a pic with Congressman Hall, me, and Buzz Aldrin.
We also had the honor of meeting Ken Abraham. Mr. Abraham is the author of many books. The previous statement doesn't do his achievements any justice. He is currently traveling with Mr. Aldrin to write/assist in writing his autobiography. Mr. Abraham has also written/assisted in writing (so sorry I don't know the correct terminology for his talent) books for/with Chuck Norris, Neil Clark Warren, Payne Stewart, Joe Gibbs, Joe Foreman, Bill Gaither, Joel Osteen, Flip Flippen (an old family friend of B's-fun connection there), Steven Curtis Chapman, John Ashcroft, etc. The list goes on and on...he is also currently promoting a book he just did, "Billy, the Early Years," about Billy Graham. It was such an honor meeting Mr. Abraham, as well. We had a wonderful time speaking throughout the event. He is a strong Believer and was quite an encouragement in our adoption journey (we just found out Friday that we have been officially removed from the list, lost all of our money, and have to start from scratch in 2012 due to B's cancer-bummer). Maybe he can turn B's cancer journey into a book to bless others some day!!
Below is a pic of me, Mr. Abraham, and Mr. Aldrin.
This is a pic of a sweet friend that I grew up with...we haven't seen each other in forever. We grew up at the same church and went to school together. However, we haven't seen each other much since high school. She has had some health issues and is finally doing better. She was at Hall's house. This is a pic of her getting hugs from Hall.
Final pic is of Mom getting hugs from Hall.
So, Saturday evening, we went to celebrate my b-day with Mom and B. We had dinner, got a cake B had ordered from Baskin-Robbins (yummy!!) and went back to Mom's house to eat the cake. As B and I were leaving Mom's house, I had a seizure that was pretty intense and I had no clue what was going on when it was over. Didn't know where I was, where I had been, etc. Those are definitely the scary ones.
The praise is that I went all day Sunday and Monday without any seizures as I define them. I had a bunch of auras which the doctors still call seizures. I'm still able to carry on conversations, walk, participate in life, etc., with auras. I just feel super nauseated and get a little sidetracked. They apparently still damage the brain, though.
We are left to decide between going forward with surgery next week or January. January makes sense logistically because it gives us time to get things lined up and organized. However, I had a really rough seizure this afternoon and when I have those, it makes me want to get in and have the surgery done immediately to move toward relief. We are still waiting to hear back from my company as to whether or not I can maintain my benefits next year which will also play a huge role in our decision.
The sermon on Sunday was about David & Goliath. If you want to hear the sermon, you can click HERE. The basic points (tell me if I'm breaking any copyright rules by typing this, Doug) were:
1. Everybody faces giants, but few really fight them.
2. Real giants taunt you day and night.
3. Giants are opportunities to trust God.
4. Define the HERO before you fight.
What I truly took from it was #4, the HERO must be defined. God must be the hero in this story. Long before the battle has been fought. He must be the hero. I can't be. The doctors can't be. The meds can't be. God is the HERO!!
The other main point that I took was that if you do face your giant, you are going to face opposition and people will try to give you their tools to face your giants read vs. 38-39
That has happened through this, as well. Despite the fact that multiple specialists have said this is the route we need to take, I have had many people tell me that God is going to heal me and I don't need to have surgery for that to happen. At the same time, so many of you have offered unbelievable encouragement! Thank you!
Obviously, this is a tough decision and no one wants to shave their head and have doctors cut in to it multiple times and remove parts of their brain. However, I have realized that it is not my place to define a miracle or healing! Does a man being beaten and nailed to a cross sound like a miracle or healing? Not in my book. Did God want that to be the answer? No. However, it was part of The Answer. It became a beautiful sacrifice that allows each of us access to the Father.
Does my battle compare at all to the cross? NOPE...big NOPE! I am in no way trying to compare what I'm going through to what Jesus endured on the cross. I'm trying to compare how easily we try to create our own definition of miracle or healing. If it doesn't match our pretty picture, then it must not be a miracle or healing.
As I've shared with a few others recently:
*Maybe the miracle/healing is that someone comes to know the Lord through this.
*Maybe the miracle/healing is that some little kiddo won't have to endure three years of seizures in the future because the docs have now seen a similar case and can address it immediately.
There are so many miracles and healings that can come from this that don't fall under our definitions. I want us to all recognize the Lord's incredibly active hand throughout this process and not limit Him to our ideas.
Will you pray with me that we can see His leading and hear Him clearly?
Friday, October 24, 2008
We saw the Neurologist about 2p Thursday afternoon. He told me that he wanted to try one more med before doing surgery. However, he is willing to progress with surgery right now if that's what we want to do. This med he wants to try has a different mechanism of action from all of the others. So, there is a chance that it might work. He told us that he really doesn't think it will work, but he would prefer to say that he has tried it and we know for sure that it doesn't. Rather than saying we wish we had tried. He reinforced that he would put me in the hospital the first week of November and get the surgery started if we felt that was the direction we wanted to go, though.
He told us that earlier in the week he and the other specialists had met to discuss one of their toughest cases and do surgery and that patient was doing well. He followed it up with, "you still hold our #1 spot for the toughest case we've seen." Am I supposed to follow that up with, 'Thank you, Darn, Yippee, When do I get my plaque on the wall of fame, etc.?" Hmmm?
He kept reinforcing that it is my decision. If we are just ready to get this over with, let's do it. If I'm willing to give one more med a try, then let's wait and do the surgery in January.
Then, we walked down the hall to say hi to my friend from college Dr. S, the pediatric neurologist. So fun that she's a doc and has her name on a door!! Wow! Mom and I each picked up one of her business cards. So official!!
We then walked a bit further down the hall to the neurosurgeon's office. My neurologist was going to call him and tell him about our visit and then we would go in to see him. Well, two hours later, they called us back. We waited about 30 minutes for his 4th year med student to come in to talk to us. We spent about 15-20 min. with her, giving her my history. She left and I had a seizure. So, she came back in to see the end of it. Then, my case became more interesting to her and she took all of the paperwork we had brought with us and was going to go research some additional facts. About 20 minutes later, the nuerosurgeon made it in to see us.
We love him. He is wonderful! He has an unbelievable reputation. It is rare to have a doc with such great "bedside" manner and be so incredibly technical at the same time. He has them both. They have kept a <1% infection rate after his surgeries due to his approach, preciseness (did I make up that word?), etc. He is a rarity in his field and a blessing to have found, thanks to our friend, M.
His approach was that he definitely sees this as a tough case., but he's willing to pursue it and sees that surgery is probably my only option. However, it will be much more drawn out than usual. I need to do some research on some of the terms he used with us. I'll try to post about those later.
He threw out an idea, for one more procedure, that I could have done before the big surgery to help them a bit more. He is going to talk to my neurologist about pursuing that, in the meantime.
However, he basically explained (this is the short version) the procedure to be:
1. Come in and have a test done where they put one side of my brain to sleep to see where my dominant functions are...wake that side up, put the other side to sleep, test the other side for its major functions.With most patients going in for this surgery, they say the success rate is about 90-95%. However, with my case being so different, they see it as closer to 60%, maybe. However, that is better than the 5% with the meds I'm on right now. So, they feel it is a better chance than sitting still and doing nothing. The neurosurgeon did encourage me to wait until January. He said that he felt that was better because if I have it this year, I will be in the hospital over the holidays. However, if I wait until January, we will have seen for sure if the med worked or not and the holidays will be over.
2. Shave my head, cut open my skull, place grids on my brain and shunts in the back of my head to drain all of the excess CSF
3. Possibly drill holes in other parts of my skull to place other types of electrodes
4. Go to ICU overnight to make sure there is no infection or other issue
5. Once I have enough seizures:
a. we got everything they needed, yeah!! Proceed with surgery.
b. we didn't get enough info. so, go back in and reposition the grids to get even deeper in the brain and repeat steps 4-5a.
c. we got enough info to know we can't do surgery. Sorry, go home with your bald head and have fun!!
6. Go in to remove all of the electrodes.
a. Cut out the bad part of the brain
b. if it's a super deep & dangerous area of the brain, wake me up, and ask me lots of questions, etc., while taking out the bad part of the brain (thus, making sure I'm not going to be paralyzed, unable to speak, etc.)
7. Put my skull back together with titanium plates and screws (no, I won't set off airport security alarms--no fun, right?).
He also said he understood that I just want these to be over. He tried to rationalize that it's okay to wait another two months when I've already gone 2.5 years. I wanted to say, "that is my point exactly: I've already gone 2.5 years. Why would I want to wait any longer?"
So, since we got home at 1am, B and I haven't had a chance to talk yet, but we need to sit down and discuss where we will go from here. Hopefully, we'll have a chance to talk tonight and see what direction we want to go from here...
Thank you to all of you super star prayer warriors. Please pray for our wisdom, peace, etc., in these decisions. As well as, wisdom for the docs.
p.s. For all of you that have been asking and praying, Ben passed the big test he was studying for...YIPPEE!! Now, he's licensed to sell securities and mutual funds, too.
Wednesday, October 22, 2008
Sweet, little Miss H took a picture of her Mommy!
I woke up Saturday morning to some sweet cuddling...
Did any of you get to see Saturday Night Live? B and I got a kick out of this skit:
Our day started with Mom doing the traditional wake up with presents being thrown on you and singing Happy Birthday. Then, we left and went to Joey's funeral. It was tough, yet amazing to see the impact this young man made in this world. He was so loved and obviously loved so many...the pastor shared the Gospel and told everyone that if they didn't know Joey's Savior, Jesus, this was good-bye. However, if they know Jesus or came to know him, this was see you soon! He then shared with everyone how to invite Christ into your life and have Him as your Savior! It was wonderful. We got to love on his family for a little bit and then they left for the graveside which was pretty far away.
Mom and I decided that it wasn't a b-day without a little PF Chang's. So,we went to Willowbrook, where our favorite manager is...he was precious. Mom and I got all kinds of yummy food and then he picked up the tab. So sweet. Then, my dear friend, A, and her kiddos met us up there for a little dessert. Our manager friend makes a special treat for me each time we go in...it's a Great Wall of Chocolate Shake. He is one of only two or three people within the PF Chang's family that knows how to make it. Anyway, he made it just in time for A and her kiddos arrival. So, Mom & A shared one. Her two oldest shared one. Then, as the b-day girl, I got a whole one to my self. Or, I was selfish and didn't want to share and just took one for myself because it is so yummy.
The girls went to town on theirs and finished it in no time.
Than, A & Mom went to town on theirs.
Here is a pic of all of us (except for Mom-she's taking the pic).
Health-wise things aren't the way I would like. I had ten seizures yesterday and I've already had eight or so today. I was kind of hoping I would get a reprieve for my b-day. As if turning thirty isn't bad enough, I shouldn't have to have seizures, too. Right? I've already had around 85 just this month. So, I'm ready for them to be gone!!!
Friday, October 17, 2008
The family will try to keep his site updated: http://www.caringbridge.org/visit/josephwilliams
Please begin praying for his family's strength to get through these next days. Please also pray for his boys as they find out today that their daddy is now in Heaven. Their oldest son has epilepsy and stress lowers seizure threshold. So, please lift all of them up as often as you possibly can...
Thank you, prayer warriors!
Our Heavenly Dwelling1Now we know that if the earthly tent we live in is destroyed, we have a building from God, an eternal house in heaven, not built by human hands. 2Meanwhile we groan, longing to be clothed with our heavenly dwelling, 3because when we are clothed, we will not be found naked. 4For while we are in this tent, we groan and are burdened, because we do not wish to be unclothed but to be clothed with our heavenly dwelling, so that what is mortal may be swallowed up by life. 5Now it is God who has made us for this very purpose and has given us the Spirit as a deposit, guaranteeing what is to come.
6Therefore we are always confident and know that as long as we are at home in the body we are away from the Lord. 7We live by faith, not by sight. 8We are confident, I say, and would prefer to be away from the body and at home with the Lord. 9So we make it our goal to please him, whether we are at home in the body or away from it. 10For we must all appear before the judgment seat of Christ, that each one may receive what is due him for the things done while in the body, whether good or bad.
The Ministry of Reconciliation11Since, then, we know what it is to fear the Lord, we try to persuade men. What we are is plain to God, and I hope it is also plain to your conscience. 12We are not trying to commend ourselves to you again, but are giving you an opportunity to take pride in us, so that you can answer those who take pride in what is seen rather than in what is in the heart. 13If we are out of our mind, it is for the sake of God; if we are in our right mind, it is for you. 14For Christ's love compels us, because we are convinced that one died for all, and therefore all died. 15And he died for all, that those who live should no longer live for themselves but for him who died for them and was raised again.
16So from now on we regard no one from a worldly point of view. Though we once regarded Christ in this way, we do so no longer. 17Therefore, if anyone is in Christ, he is a new creation; the old has gone, the new has come! 18All this is from God, who reconciled us to himself through Christ and gave us the ministry of reconciliation: 19that God was reconciling the world to himself in Christ, not counting men's sins against them. And he has committed to us the message of reconciliation. 20We are therefore Christ's ambassadors, as though God were making his appeal through us. We implore you on Christ's behalf: Be reconciled to God. 21God made him who had no sin to be sin[a] for us, so that in him we might become the righteousness of God.
2 Corinthians 5
20But our citizenship is in heaven. And we eagerly await a Savior from there, the Lord Jesus Christ, 21who, by the power that enables him to bring everything under his control, will transform our lowly bodies so that they will be like his glorious body. 1Therefore, my brothers, you whom I love and long for, my joy and crown, that is how you should stand firm in the Lord, dear friends!
Thursday, October 16, 2008
Get back on your knees, Prayer Warriors. It's been a tough day and the entire family is exhausted and weak. They have had his wife, Brandy, sign a DNR (Do Not Resuscitate). They have said that with all the burns, they just can't bring him back with the paddles, etc.
Please pray for the family's peace, comfort, strength, etc., and the same for the staff that is lovin' on him right now.
What is a miracle?
What is God's will?
These are questions that I ask myself constantly. Also, that I ask of the Lord.
We have had many that encourage us to pray in faith for miraculous healing. Others that encourage us to pray for just the right combination of meds to work. Others that encourage us to pray for the Lord's will. I get lost in all of this. How can I pray for the Lord's will to be done, yet also ask for miraculous healing and believe it will occur? What if that isn't His will? There is no doubt that I still ask for healing, but I also want to pray in His will.
So, let's dig into the Word and see what we can learn about prayers, faith, and miracles.
The Prayer of Faith13Is any one of you in trouble? He should pray. Is anyone happy? Let him sing songs of praise. 14Is any one of you sick? He should call the elders of the church to pray over him and anoint him with oil in the name of the Lord. 15And the prayer offered in faith will make the sick person well; the Lord will raise him up. If he has sinned, he will be forgiven. 16Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous man is powerful and effective.
A Prophet Without Honor53When Jesus had finished these parables, he moved on from there. 54Coming to his hometown, he began teaching the people in their synagogue, and they were amazed. "Where did this man get this wisdom and these miraculous powers?" they asked. 55"Isn't this the carpenter's son? Isn't his mother's name Mary, and aren't his brothers James, Joseph, Simon and Judas? 56Aren't all his sisters with us? Where then did this man get all these things?" 57And they took offense at him.
But Jesus said to them, "Only in his hometown and in his own house is a prophet without honor."
58And he did not do many miracles there because of their lack of faith.
Boasting About Tomorrow13Now listen, you who say, "Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money." 14Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. 15Instead, you ought to say, "If it is the Lord's will, we will live and do this or that." 16As it is, you boast and brag. All such boasting is evil. 17Anyone, then, who knows the good he ought to do and doesn't do it, sins.
So, we should pray in faith for miracles, but also pray in the Lord's will. I think that too often we pray selfishly, for what we want and then we get upset when we don't get it. I have also found that it might not be for me to define what a miracle is or is not.
Warning to Pay Attention1We must pay more careful attention, therefore, to what we have heard, so that we do not drift away. 2For if the message spoken by angels was binding, and every violation and disobedience received its just punishment, 3how shall we escape if we ignore such a great salvation? This salvation, which was first announced by the Lord, was confirmed to us by those who heard him. 4God also testified to it by signs, wonders and various miracles, and gifts of the Holy Spirit distributed according to his will.
Most people that I speak to want the miracle to be that the seizures just disappear...POOF!!! That would be wonderful, but on a million different meds, how would we know? Others want it to be that we find just the right medicine that works. I struggle with calling that a miracle b/c then I'm on meds for the rest of my life and they are all dangerous in pregnancy and thus increase the risk of harming any birth children the Lord might choose to bless us with at some point.
Is a miracle defined as the seizures just disappearing or is a miracle that the doctor's are able to do a surgery that seems so unlikely and risky? Is it that they discover something unknown and the door opens to treat many more patients that have been suffering? Or, is it someone coming to know this amazing Savior who died for you and me? I don't think I've been given the go ahead to define a miracle. Also, I don't want to find myself so stuck on my definition of a miracle that I miss HIS definition.
Much like the following story:
The man has been notified that his house is going to be flooded and he needs to get out of the house. He says no I don’t have to, God is going to take care of me. Then the flood starts to rise and a sheriff comes along and tells him to get out. The man says no, God is going to save me. So, the floods continue to rise, and he climbs on top of the house. A boat comes along and he’s told to climb into the boat. He says, no, no , God is going to save me. Finally, a helicopter comes along and they lower the net to rescue him. The man says, no, no, God is going to save me! Well, the man drowns and goes to heaven. When he gets to heaven he says to God, "why didn’t you save me?" God says, "I sent the sheriff, I sent a boat, I sent a helicopter, what more did you want me to do?" There is a point at which we have to take responsibility for our faith. When God sends a helicopter, you have to climb in. So, action is a part of faith and prayer as well.
Point being, I want to pray big prayers with lots of faith and I don't want to miss all the miracles He is performing because I'm busy looking for the "miracle" that I think should be performed and not praying in His will.
Sorry for all the rambling, this is just what is floating through my mind right now as we get closer to having to make decisions on surgery, etc. If any of you have scripture and encouragement to share along these lines, we are open to continue learning amidst all of this.
Wednesday, October 15, 2008
Here is S, B, & E. Fightin' Texas Aggie Class of 2002.
The Fightin' Texas Aggie Class of 2001 (WHOOP)!!
It was a special time. We got to meet men from the first Fish class ever in F-2. I would say there were at least 100+ people present. They took a picture of everyone, but we don't have a copy of that yet! I'll try to post it when we do....
Tuesday, October 14, 2008
He is one of the punters for K-State. Here are some pics of him warming up prior to the game. We know he made our Granny so proud!!
You can see B's new girlfriend, M!! She found his tickle spot and had some fun...
Sorry I cut off his head in the pics. He pretended like he didn't know she was there...
Then, she would go in for the tickle and he had fun. Can't believe I didn't get pics of those reactions. They had so much fun together! Lots of fun giggles and precious laughter!!
These are picks of the Corps at Step Off. The Fightin' Texas Aggie Band leading the way.
Here they are entering Kyle Field!!!
Monday, October 13, 2008
Saturday, October 11, 2008
This is Fish P with my good lookin' hubby. Fish P is such a Rockstar. So, say some special prayers for this guy that he makes it through his Fish year with flying colors and that he can impact his buddies for the Lord!!
Here are some pics from Fightin' Texas Aggie Yell Practice!
Saw Varsity's Horns Off!!