Seizure FREE

Who out there has been praying--asking--begging to be seizure free? Whether several months, years, decades... I know so many. I sure have been one of them. 
I was born with epilepsy basically. Five months old was the first, one year old was the medicated time forward. All my childhood, they were NEVER controlled. But they were a type that had a HUGE aura, warning, to tell me when to be in a safe place. As a child who is busy, living on the edge, that was a blessing from God. They were under control completely for the first time when I was 17-22. Then about 22, due to stress in my first marriage, my seizures began to change some--from atypical absence seizures--to complex partial seizures. And then I got pregnant...and they really hit a doozy. Talk about worsening. BUT ALL FOR AN AMAZING GIFT...my child Tory...never would I change a thing.
Thru all that, and a rough marriage, led to multiple brain resections. For that I am ever grateful. I learned the hard way how to find Jesus after my first brain surgery...worth every bit of suffering to find out THE REASON WE ARE HERE! Then, when found Him.. struggled thru addictions to numb pain--until I REALLY REALIZED it was to give ALL TO HIM... HE HAS ALL PLANS... that was when all things began to unfold for good!! In hard times, HE BROUGHT GREAT RESULTS...with trust and patience!! And I am forever grateful.
I was able to reach out help others thru my tough times, and learning. I was able to keep my light burning bright FOR HIM--thru ALL CIRCUMSTANCES... knowing He has awesome plans for you thru ALL-- ALL... just hold on tight with TRUST.. love Him and be obedient! HE HAS MORE TO COME!
And with all our stuff we touch peoples lives... some we know, some we don't. We help bring others to our Lord and Savior. We help others turn back to Him. We have others begin to wonder!! Planting of the Seed! We shouldn't dwell on tough times...be glad! As for He has plans for it all-- for HIS GLORY!! Be honored!!
My 3rd brain surgery just amazed me!! The surgery didn't. How HE watched and guided the surgeons, had everyone praying, kept everyone calm...HE AMAZED ME!!! Awake brain surgery. Only Christ could have someone be like me... so CALM and excited to be awake during brain surgery. He just amazed me... and I am sure ASTOUNDED my neurosurgeon, for me being so laid back and calm!! He is one amazing God.. why worry!!??
Know... He was and is there every step of the way. I KNOW THIS FACE TO FACE FOR IT ALL... AND DURING AWAKE BRAIN SURGERY!!! As I sit here typing seizure free still... I am twice as grateful. He just amazes me more and more every day... but I do know, prayers never stop. And I am here for answers, and prayers for all. Know that... @AliveinMe and @EpilepsyCures As for I am forever grateful!


Blessings... know HE IS WITH YOU, ALWAYS!


In His Grip,


Heather


Isaiah 58:11 The LORD will guide you continually, giving you water when you are dry and restoring your strength. You will be like a well-watered garden, like an ever-flowing spring.

New Beginning...

Our precious gifts from God

aren't too tough to be told;

they are gifts from Dear Jesus

His dear love cannot be sold.

How thankful to Christ you are 

living day by day here for Him.

Thru His light in our blessed life

Sharing with all, I WILL NOT GROW DIM!

That is just so true. I love my kiddo Tory so much. I am amazed and astounded at how much this kiddo can take at such a young age. Which time? When we had to leave my ex the first time when she was 3 mos old, from lack of care? When she saw me go thru my first brain surgery at 1? When she saw that my ex tried to be part of our life again, until he beat me when she was 1 1/2? Or all the overdosing and seizures and hospitalization on those that followed? She saw my 2nd brain surgery at 3 1/2... my surgery to take the screws out at almost 5... and this surgery-- the intense AWAKE-- gone over 2 weeks hospitalization-- she is almost 9 for it. 

She was nervous that first day I was gone. She was tired. Didn't have me putting her in bed. Worn from all the places she had to go. Overall-just wanted a MOM hug, one that proved she is ALIVE... even if she has deep wires in her brain. I asked my precious hubby to please brain her up... and during all the worry time away from me... she did her usual... she got hives all over her body. So the trip up here to see me-calmed that down the rest of the time. She made several frequent visits-and was a-ok!! I know what it is like having her in the hospital-- I just don't leave. That is so tough. She and I always "argue" who loves the other "more." She has such an unbelievable heart. One that only parents can have very tiny to do with- the rest is all Jesus! And I praise Him for that!!

She would come up and love to feed me-like pay back of all the times I'd do it for her!! She has a heart beyond any I have really come across at this age, constantly. She isn't perfect.. but she is darn close when it comes to how much we are to love all, at all times with our heart. And I am so proud of her.

This little one has a controlled case of absence seizures. I am blessed controlled. Therefore she has a larger chance to outgrow them - than most. I pray she does. If not-I just pray she uses it all FOR HIS GLORY-- the way mine turned out. It has taught me the wondrous ways Christ works in our lives--great times, and very much tough times. His timing and plans are perfect. That is where I say, in all circumstances, praise Him, knowing-HE HAS HIS ANSWER, HIS PLANS... and with trust, love, obedience... they will unfold!

I Love you all-- you all were such sunlight, even on tough days-- and you always remain sunlight- in my life everyday. My head hurts-- and my shaven part is quite deep this time-- but all for HIS GLORY-- not mine! I truly praise Him for every step... and every doc He guided me to. I feel so blessed... I am just here to share!

God bless you all!! Thank you for your warm heart and care!

In His Love,

Heather (Hetty) Siebens  @AliveinMe @EpilepsyCures

http://www.causes.com/epilepsycures

http://epilepsycures.ning.com

1 Peter 5: 6-7
So humble yourselves under the mighty power of God, and in His good time He will honor you. Give ALL your worries and cares to God, for He cares about what happens to you!!

Heather's Epilepsy Journey - Day 12

What a day to remember...I think I'll call it the HALO day.

Heather had her awake brain surgery today. The morning started out very well..she slept soundly through the night and we had a nice morning together before she was rolled into pre-op. Her mood was outstanding. She was excited, giddy and intypical Heather fashion full of dry humor. At 9:30am they let me kiss her goodbye and off she went..ready for the journey she has been wanted for over 5 years.

As I tweeted about her..the outpouring of prayers, texts and emails was inspiring. I apologize for not getting back to each of you personally..but I lost count somewhere around 100 messages. God has blessed us and we cannot begin to express what your friendship means to our family. Each of you are a true gift from heaven.

After a 3:30 surgery I was summoned by the nurses to meet with Dr. Zimmerman. Dr. Z was optimistic as to the potential outcome. He explained the procedure and in my non-technical terms..and to the best of my understanding..this is what happened.

They first put Heather under with a light sedative. Once she was asleep they positioned her on her back and turned her head all the way to the right to expose the left side of her head. Once in this postion they shaved a few portions of her head, drilled a few holes and secured a "Halo" on her head. This halo was then secured to the table so she could not move. Once this was complete they opened her skull and removed the grids that had been inserted in her brain last week. At this point they woke Heather up. There was a drape over her face and a neurologist began to test Heather's ability to function, read, hear, see, understand etc. as Dr. Z began to identify exactly what portions could be removed. He told me he cuts the blood vessels in the Hot Spot Zones then carefully tests how much addtional brain can be removed around the Hot spots. When an activity caused Heather to stop functioning..they went no further and sucked the brain matter out that had been identified. I am sure this is WAY OFF..but like I said...this is what I got out of our 5 minute conversation. Dr. Z was concerned about her periphical vision...but other than that he thought she can through everything very well. She was joking all throughout the procedure with the Dr's and nurses...she was a model patient. He had warned her that once she was awaken..if she "freaked out" due to the halo securing her Head in place and her inability to move..the procedure would have to be terminated. Not a chance with my girl! ;)

I got to see her a few hours later and what I discovered completely amazed me. I walked into the ICU and she was sitting up, in some pain..but NOTHING like last week. She was smiling, talking, hungry...had had not vomited one time. In all reality..she looked the same as before the surgery! We had a wonderful time together and i just was in awe. As one of our friends put it..she is Wonder Woman! I got her some food and we began to settle into the evening. We took pictures, and she even started calling and testing people...:) you can't keep a good woman down. She was SO excited about the procedure. We did notice that she has some issues with her upper right peripheral vision..but the Dr's seem to think that may come back in time.

Everything was perfect..until out of the blue she looked at me and started saying things that didn't make sense..she grabbed my hand and started to have a seizure. She was "gone" for about 20 seconds..just starring and smaking her lips. This is one of her typical seizures. It made my heart sink...but then again, her body has been tramatized, she does not have any seizure meds in her system and the hospital was trying a new type of pain med she had never had before. These, combined with the fact that we knew they could not get all the Hot Spots..made it bearable.

I know we are praying for a complete seizure free life...but the goal is for her to reduce the medications and have a better quality of life so she can enjoy each day to it's fullest and not be confined to our home. We are encouraged by what the Dr's WERE able to remove today...we will just wait, pray and see what God has in store.

The reason why I'm calling this a HALO day is that it started with her being confined and secured to the bed...not being able to move because of her Halo. However, I know as Heather moves forward...no matter what the outcome of today..Heather will NOT be confined in this life..she is going to follow hard after God and do His plans to the best of her ability. She is going to continue to strive to by Holy for Him. The symbol for Holy is a Halo...

Heather..my hope, dream and prayer for you is that you always have a Halo over your head. You amaze me...I am so proud of you. Never give up, Always have faith and continue to be my Wonder Woman.

The journey continues...

Heather's Epilepsy Journey - Day 11

The time has come...

Let's get ready to rumble...

Now or never...

Brain surgery or bust..

Ready or not her it comes...

I guess you get the idea. Tomorrow morning is the day Heather has waited 5 yrs to arrive. She goes into surgery around 8:00am. It will not be a simple surgery, but we have faith and complete confidence that Jesus will shine...and we will all give Him glory. I know His plans will be completed in her..I just pray those plans match up with our hopes and desires.


You would all be proud of my girl. She is excited and giddy. You would think she is getting married tomorrow not having surgery. :) The only ill effects she has at this moment is withdrawl symptoms from not being on her normal meds. She is a bit shaky and is having trouble sleeping. We know these symptoms will go away after the surgery...and hopefully in the not to distant future she will have to go thru withdrawl for good since she won't have to be on meds any longer!!! Make it so Lord! ;)


An update on my post from last night regarding her hearing issues.... Apparently she has fluid on her brain and in her inner ear. The fluid is causing sound to echo and take longer to reach her left eardrum compared to the right. so everything is in stereo...Paying that will go away after the surgery as well.


I will be here the next 48 hours and keep everyone up to date on her progress via Twitter and Facebook.


Heather and I want to thank each of you for being on this journey with us. You have made it a blessed trip and we look forward to the first day of the rest of lives tomorrow..no matter what that holds.


Where two or three are gathered..Jesus is in the midst of them. Be with us tomorrow..I want Jesus holding her hand.


We love you all....

Heather's Epilepsy Journey - Day 10

Today is a day the Lord hath made..let us rejoice and be glad in it!

Are you a procrastinator? I know many times I am...there are so many things going on in life that sometimes, or many times I say to myself..I'll get started tomorrow. You do realize that God calls us to use everyday for His glory!

Heather posted a video today and the theme song states we should "sing until the whole world hears!" What are we to sing about? The power, amazing love and Good News of Jesus. No matter what we are going through in life, we can still rejoice and be glad in it!!!..if we know Jesus and have him in our lives. What a sad life it would be without knowing Him.

Our church recently did a series on Worship. Worship is so much more than singing..it is spending each moment sharing our love for Jesus with those around us..being Him in the flesh and "singing till the whole world hears"...

I am proud of Heather for her "Voice" in this world. she is not the greatest singer of all time..but she does spend each day doing her best to worship Jesus and she certainly does her best ot rejoice in each day.She has helped me pick up the pass in my walk with Jesus and become less of a procrastinator. She encourages me to "sing" with her..and for that I am eternally grateful. Today was a fairly good day for her. They have officially scheduled her resection surgery for Friday morning. The Dr's believe they have the data required for the surgery. Please pray that it will be a success and that Heather will finally be free of this "thorn" she has lived with her entire life. However, no matter what happens..please pray that she will be able to rebound from the surgery and continue to impact the lives of people in her worship of Jesus.

Tonight she has notified me that she is having an issue with her hearing. I am not certain what the issue is..I am trying to track her down for the details..please pray that whatever is causing her to be concerned tonight will disappear an her hearing will go back to normal. Music is such a key part of her life..Please pray.

I also heard Heather mention today that she wants to "Live like she is dying"...That is such a great song. May each and everyone of you...live for Jesus. may you strive to worship our Lord. May He bless your singing and may we procrastinate less...Live like you are dying>

We love you and God Bless.

P.S.- I will be spending the next couple of nights at the hospital with Heather so expect more regular updates on Twitter @flyingchristian and my Facebook.

Heather's Epilepsy Journey - Day 9

Today I am going to leave the update to my wife..the amazing Heather Siebens aka @AliveinMe - In her own words....
TODAY IS AMAZING
Posted 9 hours ago
I wound up having weird seizures throughout the night. That is always blissful, when they can see the seizure-before you know!! Then come rushing in as if you are about to die!! Perfect time early early morning!! But any way-is a great way...
They came to talk. I was so blessed because my head was wakened by my nurse who had to give me a morning pill after all the chaos earlier, and check my BP etc before her shift ended. I woke up without a head THROB! Thank you all for your prayers!! Just after I was able to use the bathroom, I was up for the rest of the morning at 7:10-- in time to see my neurosurgeon come in thrilled with all going on.
He had them run that brain stimulation testing--BIG reason for all the depth wires in my brain. And it was to look at language-both reading/comprehending and very much able to read, fluently still. While they shut different parts off more... I had one odd reaction-nothing big... but my mind was all in tact, understanding, and knowing the words etc,,, but a flashing light would go off in my upper peripheral vision. Then one other at the end slowed some concentration... but otherwise ALL IS CLEAR that they are concerned about, to take out!
This has always been uncomfortable first having this first electrode surgery-- as for things in your brain is not normal.. but thru all your kind words, PRAYERS, and love-- I had an awesome day today!! Hardly any pain... to God be the Glory always. He knows the time-HIS TIME. And I sure praise Him.
They always want a couple more seizures for surgery-but they have so many of mine that it is a weird blessing. So few more nights of this wire stuff... then they will be resecting!! AMEN!


Love you all! All of you have been praying since Jan, 2009!!!! WOW--it is finally HERE! AMEN!!!


In His Love,


Heather Siebens @AliveinMe @EpilepsyCures
480-717-1018 (cell)
480-342-0511 (my room)
Mayo Hospital
5777 E Mayo Blvd
(RM 5W-11)
Phoenix, AZ 85054


Jesus...To you be all the Glory, Honor and Praise. May your name be glorified by our lives as we strive to walk for you...


This is getting exciting!


Until tomorrow...

AMAZING DAY..... JUST CAN SAY- PRAISE YOU JESUS!!

I wound up having weird seizures throughout the night. That is always blissful, when they can see the seizure-before you know!! Then come rushing in as if you are about to die!! Perfect time early, early morning!! But any way-is a great way... thru HIM!

They came to talk. I was so blessed because my head was wakened by my nurse who had to give me a morning pill after all the chaos earlier, and check my BP etc before her shift ended. I woke up without a head THROB! Thank you all for your prayers!! Just after I was able to use the bathroom, I was up for the rest of the morning at 7:10-- in time to see my neurosurgeon come in thrilled with all going on.

He had them run that brain stimulation testing--BIG reason for all the depth wires in my brain. And it was to look at language-both reading/comprehending and very much able to read, fluently still. While they shut different parts off more... I had one odd reaction-nothing big... but my mind was all in tact, understanding, and knowing the words etc,,, but a flashing light would go off in my upper peripheral vision. Then one other at the end slowed some concentration... but otherwise ALL IS CLEAR that they are concerned about, to take out!

This has always been uncomfortable first having this first electrode surgery-- as for things in your brain is not normal.. but thru all your kind words, PRAYERS, and love-- I had an awesome day today!! Hardly any pain... to God be the Glory always. He knows the time-HIS TIME. And I sure praise Him.

They always want a couple more seizures for surgery-but they have so many of mine that it is a weird blessing. So few more nights of this wire stuff... then they will be resecting!! AMEN!

Love you all! All of you have been praying since Jan, 2009!!!! WOW--it is finally HERE! AMEN!!! I even got an awesome text message from a dear soul in Canada who somehow found out about me!! WOW!! God works wonders EVERY DAY IN OUR LIVES!! I am so grateful to have found Him and always stick to Him. Not regret any of what I went thru, or go thru-- as for I found Him, clung to Him, and in deep love with Him--watching Him work all different miracles thru every challenge! All worth it every moment. He is God-- God is GOOOOOOD!! AMEN!!

In His Love,

Heather Siebens @AliveinMe @EpilepsyCures
480-717-0609 (cell)
480-342-0511 (my room)
Mayo Hospital
5777 E Mayo Blvd
(RM 5W-11)
Phoenix, AZ 85054

1 Thessalonians 5:16-18 Always be joyful. Keep on praying. No matter what happens, always be thankful, for this is God's will for you who belong to Christ Jesus.

Wires in, on and Brain OUT !! from Hetty Siebens on Vimeo.

Blessings ALL!!

Heather's Journey - Day 8

Day 8 has been a pretty good day for Heather. She has been fairly active and the RN has not had to give her nearly as much pain medication as the last few days. Heather did have some pain tonight..there is a electrode on her forehead that is really hurting her. I guess the Doctors are going to reposition it tomorrow. Hopefully that will lesson the pain. They continue to strive to get her to seize and conduct some testing...The goal is to be ready for surgery on Friday. :(   (AMEN-per Heather) We will just have to be patient and see what transpires.. Sometimes our wishes are not he same as God's wishes....He knows what is best for us! We have to just trust Him!

1 Thessalonians 2:4 Our purpose is to please God, not people. He is the one who examines the motives of our hearts.

I saw Heather post this tonight on Twitter and it rang something in my heart about the last week. Many of you may know my story, but I'm sure others do not. I'm not going to get into all the gory (only some-per Heather-he is dear!)  :) details tonight..plus this blog is not about me..;) But I will share my story enough to tell you that I have not lived up to this verse in my life. My entire life I did everything I could to please people. Sadly, that meant many poor decisions which caused heartache not only in my life, but also those people I was trying the please the most. Heather has always preached that I loved her too much. That I needed to focus less of my attention on her and more on Jesus. Don't get me wrong...I love God..but at times I forget that He should be #1 in everything I do. Over the course of my marriage to Heather I have been on a journey...a different journey than the one Heather is on..but a journey none the less. Heather talks about how she welcomes her epilepsy because it has forced her to put God first...That is the amazing thing about suffering...why is it so much easier to come to Christ when we are suffering rather than when things are good? Why is it easier to pray and surrender in hard times?
Heather has been an instrument of God in my life. Through her. God continues to mold my heart and teach me life lessons. These lessons are continuing to be solidified this week. By witnessing others actions and their outpouring of love for my wife and our family and by experiencing the pure joy of being a part of her story...her journey...I am realizing first hand the power of putting God first in our lives and I pray you are as well. What incredible satisfaction to honor our Savior first! He will not disappoint us and He will also open our eyes to the secrets of joy in this life if we choose to put Him above everything else. By putting Him first..others are pleased...God stands for us and wants us to receive joy. He is a God of Love and if we "pay it forward" His love will spread like wildfire..it will consume us..and everyone who calls Him Lord and is in the path will be caught up in a journey of a lifetime if we allow Him to lead. This is the key to happiness in life. Love the Lord God will all of your heart, mind, soul...He will love us back.
Miracles are happening everyday...enjoy the journey.


Until tomorrow. @flyingchristian (Christian Siebens)

Colossians 4: 5 
Live wisely among those who are not Christians, and make the most of every opportunity.

Colossians 2: 8 
Don't let anyone lead you astray with empty philosophy and high-sounding nonsense that come from human thinking and from the evil powers of this world, and not from Christ.

Heather's Journey - Day 7

It's Superbowl Sunday! Not that Heather could care less...but I think there is some symbolism and irony in today. Congratulations to the Saints for winning their first Superbowl...job well done.
As exciting as the Super Bowl is I know there are many more important things in life than football. As Heather sits in her hospital bed she continues to remain upbeat about her present situation and positive about her future. Last night was a difficult night..so much so that Heather now has a dedicated nurse on call 24/7 for her pain issues. The Dr's want to help control her pain so they can begin to analyze her brain activity. Nothing further can be done until she has more seizure activity so a surgical gameplan can be developed. So as difficult as this is to write..please pray for seizures. Pray that they will identify the exact location that can be removed and pray that section is resectable without negative effects for Heather. With God all things are possible...we are confident in that.
As I was watching the Superbowl tonight..I contemplated about what a "Saint" really means...According to Websters Dictionary a "saint" is: "A person of great holiness". Although many of us have "holy" moments... The only person I know who of great holiness was Jesus Christ. As earthly sinners we are far from saints...however, through the amazing power, grace and mercy of our Lord we have the ability to put on Christ and be His hands and feet on this side of heaven. Our "gameplan" should be that of a saint. I know neither Heather nor I are a saint..boy do we have stories...:), but it is our goal to be more "saint-like" and that is only possible through the power of our Lord. Saints also usually have to go through pain and suffering in their life. Jesus said we must "take up our cross daily and follow Him"..Heather talks about the Apostle Paul and the fact that he had a "thorn" that he had to deal with daily in his life. That "thorn" is never really identified..but despite his thorn, he impacted the world for his Savior. Heather wants to be a Paul...and she is willing to live with a thorn if that is the will of God.
I know that Heather truly appreciates the amazing encouragement and outpouring of love from so many across the world. Please continue your encouragement. It means the world to both Heather and I...But also please join us in playing the game...develop your gameplan...join the team and do your best to become a saint. Individually we can make some good plays, but together we can win the SuperBowl!


Until tomorrow...Blessings from Heather and I. We love you.

Day 6 - Heather's Journey Continues...

The weekend has arrived, but to Heather the days are beginning to run together. She usually keeps the lights off and the shades pulled to minimize her headache activity. It seems to me that she is beginning to get anxious for the pain to lighten up. Who would blame her! She also is complaining of a few issues that begin to occur when you are in bed and not moving for so long. But she remains strong, positive and motivated to do everything possible to make this surgery as much of a success as possible.
Today she was visited by a number of friends and relatives...When I arrived the room was full of flowers, cards, books, stuffed animals...she is fortunate to have so many people that love her..I know it helps to have people visit to pass the time and provide encouragement..but can cause headaches to increase..but don't be fooled, she is a trooper and would never pass up the opportunity to spend time with all!
Please pray for her as the Dr's begin to remove more of her meds and work to begin their testing...I hate to think of her having seizures, but I know this is a required step..so she is in the hands of Jesus. I know He will watch over her and protect her during these difficult days. Also..please continue to pray for her to be delivered from so much pain. I just got a text from her saying she is throwing up again due to the pain...I feel lost and don't know what to do other than lean on Jesus and all of you..she needs your prayers and we thank Jesus in advance for listening to the prayers you are lifting up on her behalf.
I know tomorrow will be another day of visitors..I hope it does not stress her to much. Please watch the videos Heather has been posting..she loves sharing pictures and music which are meaningful in her life. I know it is her prayer that through her life and the life of our family, others will discover the wonders of a life in Jesus..and even through her pain..she is doing her best to further His kingdom.
I couldn't love her more..or be more proud.


May you all have a blessed Sunday celebrating our Savior!

Heather's Journey Day 4 & 5

First off...please accept my apology for not getting an update done last night. In all honesty..I got caught up in my daughter's homework and was too tired to sit down and blog when we were done..So tonight will be a combination of Day 4 and 5.
Heather has been experiencing more pain than the last surgery. Not really certain why..but it probably has to do with the extra time Dr. Zimmerman spent trying to separate her Dura from the surface of the brain. Yesterday Heather spent most of the day sleeping...they did remove her IV's and put in a PICC in her bicep. All I can say is OUCH! She was telling me that they have to monitor the insertion of the PICC very closely..it is a dangerous procedure if not done correctly. I remember Heather's last PICC procedure. The hospital had to get my permission to do a PICC because of the risk. Heather was still incoherent and I was her Power of Attorney. Fortunately everything went well this time..except she did mention that the PICC line got too close to her heart and it made her heart beat over 150 beats/min...so they had to back it out and start over!! You may have also noticed from the pictures Heather posted that someone got into her room and tried to steal her computer...After a major fight, Heather won...but the intruder left her with a black eye. I would not want to see what the intruder looks like!! No one gets between Heather and her computer! :)
Today when I got to the hospital I was pleasantly surprised to find a glowing Heather..sitting up and typing away on her computer! Praise the Lord! She looked and sounded fantastic. The pain is still throbbing in her head...but it was controlled a bit better. We were able to eat dinner together. Heather has not been eating much..so to see her eat made me smile.;) We had a very enjoyable time with each other..took some pictures, talked about the future and even had a few laughs. That is actually not a good thing since laughing makes her hurt more..but from my standpoint it was fun...and in reality I know she enjoyed it as well. It's funny that when I look back on Heather's hospital stays in the past..many of the memorable nights are of us sitting together, holding hands and laughing. There are a few scary moments as well..but fortunately we have been blessed and Heather is always sucha positive patient that the good memories outway the bad.
The Dr's are going to begin to ween her off her epilepsy med's tonight. They want to begin the process of stressing her brain and reviewing the data from the probes in her brain. Fortunately both Dr.Zimmerman and Dr. Drazkowski are working this weekend..so she can actually progress with her treatment rather than just sitting in the hospital all weekend waiting for the Dr's to return!
I stand amazed and feel very fortunate to have the opportunity to interact with so many amazing people Heather has as friends. As I'm sure Heather has mentioned..I am a bit introverted when it comes to new relationships...but this experience has really opened my eyes to the wonders of fellowship and God's perfect love. I look forward to furthering my relationships with you all and pray Heather and I will be able to personally meet many of you and express our deep appreciation for your sincere care for our family.
May God grant us all the ability to support each other in both good times and bad. We are a family through Him.


Until tomorrow...Blessings to you all.


Christian Siebens  @flyingchristian

Day 3 - Heather's Epilepsy Journey

The theme for today is: Transition


I feel out of sorts. I am doing my best to transition between Dad, Husband, Employee, Christian...Then again..why do I think I have to choose? In all reality, I am all of these..24/7 365 days/year.


I was not able to spend as much time by Heather's side today. Our daughter Tory has developed a full body rash..and to the best of our understanding it is Stress related. Tory is 8 yrs old..and probably the most amazing 8 yr old on the planet. I might be biased..but truly she is a remarkable little girl whom God is grooming for his glory! I kept her home today and took another day off of work. After addressing her rash..we decided to head up and see Heather (this is truly what I felt Tory needed to help with her stress)..when we arrived at the hospital I found out because of the flu season, only children 12 and older are allowed to visit. By the grace of God, we were able to talk our way in. ;) According to the RN attending to Heather, she had a good night and the nausea has been less frequent. They are still giving her pain meds every hour..but she is finally transitioning to being more comfortable. She developed a Black Eye overnight and she is a bit swollen on her left side..but overall she looked fantastic!


We were able to spend an hour with her and even took some pictures! I believe she has posted these on her facebook account. She was very talkative and Tory got the opportunity to feed her which made her feel very special. Tory is very sentimental and she mentioned to me after we left that "Mommy use to feed me..I really wanted to help her like she helped me and feed her"..she was very proud. Tory is at that point in her life wher she too is transitioning to becoming a young girl...and the relationship with her Heather is more important than ever.


Heather felt well enough to begin to tweet today..you cannot keep a good woman down..and Heather is truly a good woman! I am proud of her that through her pain..she has remained true to her beliefs and has been an example of Jesus for the entire staff that has taken care of her. I have heard the way that others treat the RN team..or the things they say when in pain..I am happy to report that Heather has been a Christian example..every moment.


As we transiton to the next phase of her journey..I know Heather will continue to be the light she is...the doctors are going to stress her body soon..they want her to have seizures so they can monitor her brain wave activity...this is the only way they will be able to decide the next step and know what portion of her brain can be removed...but through the stress..she will glorify God.


I have heard from many of you and cannot begin to express my gratitude for your love and care for Heather, Tory and myself. I couldn't sleep last night in our bed..I missed Heather too much. But the couch provided a great place to rest and contemplate the future. I am confident that once Heather is home and recovers..we will begin our transition of helping others in a much bigger way. I know Heather has goals...so do I. We both truly believe that the best way to impact others is to live a transparent life..one which shows our failures, but glorifies God's amazing grace through it all. We are in transition...may God bless our present, use our past and expand our future.


Until tomorrow..God Bless you all.

Day 2 - Heather's Epilepsy Journey

As I sat in Heather's room last night watching her drift in and out of sleep and witnessing the pain she was in...it made me think about Psalm 40. Many of you may know Heather's story..but she has gone through alot in her life. Most of it without knowing the love, peace and comfort of Jesus. Her journey is still in progress and like all journey's...sometimes you have to go through dark places to find the promised land.
Funny thing is..although Heather is in serious pain..I truly believe she would say this is not a dark place...this is the path she wants..one that she feels she must pass through to reach the promised land of better health. Heather does not better health for her however...she would say she wants to be a better Mom, a better Wife and better witness for Jesus. Sure she would love the freedom better health would bring for herself..and there may be a little selfish desire within her...who wouldn't! But, honestly..Heather is about helping others..it is what drives her. I pray God grants her this wish.
Today was a day of pain. Pretty much all day. Heather has had to have pain medicine administered every hour or she was in tears. Pain and Nausea medicine. However thru the pain, there were some victories. We were able to get her out of ICU and into her Neurological room this afternoon. During that move, God allowed her to be relatively pain free and even smile and talk for awhile. I think most of you saw the pictures! She is an amazingly strong woman..but she has a smile that is infectious. She also had an opportunity to meet with her favorite Dr. of all-time. Her personal Neurologist Dr. Joseph Drazkowski. Fortunately Heather loves me and Dr. Draz is married..or she would leave me in an instant! ;) Just kidding. Dr. Drazkowski is the perfect Dr. for her. He listens to her with a kind heart, spends time with her when needed and cares like she was his own daughter. We are blessed to have such an incredible Dr. leading Heather's epilepsy journey. It sounds like they plan on starting Heather's testing Thursday. Pray her pain starts to ease and that she is able to rest tonight.
And do me a favor...read Psalm 40.


God is Great and so are all of you....
Until tomorrow...
In His Grip,
Christian Siebens @flyingchristian for wife @AliveinMe / @EpilepsyCures and our AMAZING LORD AND SAVIOR-JESUS CHRIST!

Heather's Journey - Day 1

Heather has been in the hospital for 24 hours...and the journey continues. I will do my best to summarize the events and my thoughts for each day.


Day 1 - Feb 1, 2010


She was in great spirits heading into the hospital..In usual Heather fashion her sense of humor was strong about the entire situation and she appeared to have zero concern over the events to unfold. She is a strong woman..with a strong faith. I admire her so...
The surgery was scheduled for 3 hours with Dr. Zimmerman. The same Dr. that has performed her other two surgeries. I left her side at 10:00am and she was off with a smile. Her father joined me in the waiting area for a couple of hours and he was able to get my mind off of the things unfolding for Heather. I tried to do my best to keep all of you updated via my iTouch...I hope it made sense. This was the first time I have ever used this device. :) I am not quite as 'techy" as my wife..I guess I am just too old. :) I was finally called into a conference with Dr. Zimmerman around 3:00pm. His first words were..."It didn't go as well as I would have hoped". Not a good way to start the conversation. Apparently he had a difficult time dealing with the scarring from the previous surgery's. He wanted to insert 4 grids in her temporal and frontal lobes..but was only able to complete 3 of the 4. The Dura around the surface of the brain at her last surgical site would not separate from the brain itself..he told me he attempted to separate this for sometime..but gave up when it became clear he could cause permanent damage to the brain. He "hoped" he had not caused any damage in this process...but that was unclear since she was still recovering from surgery and not coherent yet. He left the meeting to go back to her and conduct some post op tests.
I must say the next 3 hours were painful as I pondered if her brain functions were damaged in anyway and if the lack of inserting all the grids would affect their ability to do the "true" surgery later in this journey. Finally i was able to see her around 5;30pm..which lifted a weight off my shoulders. She looked great. Minimal bruising..just a bit puffy..all her senses seemed to be working with the exception of speaking..however, I believe that was more due to the sore throat she has from the operation breathing tube than anything else.


Now that I have been with her all night..she is speaking fine..in pain..but it appears there was no damage done in surgery. Her pain meds are only lasting about an hour and her left ankle is hurting for some reason...other than that her vitals appear good. I am being told that by the end of today she would be moved from ICU and into a room on the neurological floor of the hospital.


I stand amazed at the incredible outpouring of love, concern and prayers for Heather and our family from each of you. Our faith is strong and I know the perfect will of Jesus will be glorified thru this journey...however, having the love of so many sure helps us draw continued strength.


On behalf of Heather, myself and Tory...may God Bless each of you.
In His Grip,
Christian Siebens @flyingchristian for @AliveinMe / @EpilepsyCures

New Year- New Focus for ALL

It is now a whole New Year-- WOW!! It has been one crazy year for me... but still, very blessed. Back when my ex still had "our" daughter finally visiting him in the summer- this year it was a disaster. He has a new wife that is so controlling and jealous- so eight days I went without hearing back from my daughter-- mind you- who also has epilepsy. But I yes, was aggressive-- and talked directly to him about that. Led him to asking me and my husband (who has raised her) -to have him adopt her. That stress always causes seizures with me. More than I already have. We also decided in February to go forth with my third brain surgery-- to control seizures on perhaps one medication, not six. So we waited on the MEG test- it finally came up in November- in the same state where I had my baby girl- and my ex and his new wife live. So seizures they needed came on easily and quick-- that was an AMAZING test! Helps them see, after you've had brain surgery a couple times- or if it is a first even and it might be close to something important-- where seizures hit- how close to certain areas it shows-- helps map what they can and cannot take out. I then blissfully came back from AL with H1N1--- and was down for about a month. And that led to my B12, iron, and Vitamin D going low again. When I got better-- just in time for my birthday-- I had a great birthday. I also was able to finally go visit my dear friend @jasonmitchener --who had a rare neuromuscular disease and was paralyzed from shoulders down, on a ventilator. Would always visit and be inspired by his amazing stories-- even thru his illness-- while living in this tiny room-- of two, with a curtain. I went up on the 17th, he had passed away late the 16th-- made it thru my birthday he always remembered on the 15th. My heart was wrenched. But I know he is in a Better Place-- with Jesus. 
Now we are still waiting on the surgery date for me-- but I am excited. Gotta get thru the New Year-- and have all neurologists back in offices here, MN, and FL-- for conference. Then we will see what way is the best way. Half awake brain surgery-- or just subdural in many areas again. Mayo is one amazing hospital.
I have been thru all old and brand new medications... looking for any advice or feedback, I can sure help with that... and just know, if brain  surgery isn't an option- there are amazing devices to come, not the VNS or RNS. But more. So keep the faith. New Year is always a New beginning. As is every new day!! Reach for every star you wish to-- you can do it!


Blessings to you all!!


Heather Siebens  @EpilepsyCures and @AliveinMe


http://www.causes.com/epilepsycures
http://epilepsycures.ning.com


Psalm 116:1-2    I love the LORD because He hears and answers my prayers. Because He bends down and listens, I will pray as long as I have breath!!


Happy New Year!!!!!

Epilepsy-history recap-future to come

Epilepsy recap on my personal history--- breeze thru what I have somewhat gone thru -- and what is to come. As well as my daughter having epilepsy. Transferring my Hetty4Christ videos that have to do with Epilepsy here-- been meaning to for about a month. So this is a recap to start it up-- invite others. Blessings to you all-- know epilepsy will not hold you back- unless you let it!

Epilepsy Awareness Month how has it helped you

Epilepsy Awareness month... how has it helped you? May sound corny... but so true... In all tough times-you are able to turn them around for good in life-- and reach out to others.. be an advocate-learn amazing things thru it.. about Epilepsy, about others, about life.

Epilepsy Awareness Advocates are you open

Epilepsy Advocacy--- are you open about it? Do you share it with all easily-- without shame? It is amazing not what only it does for you-- but what it can do for others!!

Epilepsy Advocates let's talk

Be an Epilepsy Advocate!! Come talk about it with me and others--- support, knowledge, guidance.... http://www.tokbox.com/EpilepsyCures Changed it from my normal... :)

Epilepsy positives amazing actor activist

Our brain may misfire-- drugs may get us down-- but we have so many gifts, Epilepsy is not what is our life-- it is just a part of it that has answers out there. You are much more!! Great activist for it I talk about-- amazed at my epilepsy support group when we talked about his site---support-- actions.

Epilepsy, do you know your type

Out of all the types of epilepsy--do you know what type you have? I have gone thru several types--always good to know what feelings are also seizure related--so you can KNOW you are not losing your mind! Many different ways the brain misfires.

Transparency-God's workings!

Transparency ... SUCH A GIFT Jesus can bless us with----IF WE ACCEPT IT!!!

We have, yes the choice of hiding everything, or things we think that will make people run... think that we are somehow an alien or devil ridden or just weird... or we can be open with all that is going on in our life- knowing God turns all trials, health issues, work failings, money issues, marriage failings, rapings, beatings.... gosh etc.... He can turn it ALL for His Glory--- as we seek HIM--HIS help-- Trust Him... look to Him to help us thru it all-- knowing HE WILL SEE US THRU-- or we can be the type to take all control. But I say good luck. I tried that before I knew Jesus... and Lord, I can now compare the two-- BIG day and night.

I have personally been able to take many "bad" stuff and "hard" stuff... and use it to help others. See the light there is hidden in it all. As we walk close with Christ. When my ex beat me October 6, 2002... I could have been the type to yap and yell and rage on about it to the world... including (right now) our daughter.... but I didn't. I first-- because of that-- ran to find Jesus. AMEN!! Second, knew if my little one ever heard about that-- even in her very tiny years-- it would mentally affect her for years to come. Divorce-- even when the child doesn't know that other half well, is hard enough. I had parents that shared way too much info on their tragic marriage with me when I was small--that is where you live and learn comes in handy. Thru my close walk with Jesus since I found Him in 2003... it took me 3 more years to forgive my ex--- but it sure felt awesome when I did. And thru that.... he came into Tory's life for almost 2 years... with me being cordial, working with him and his military schedule. With faith-GOD WORKS WONDERS. He wasn't happy that Tory never saw him as dad few times she saw him. Well, my husband today has raised her since she was 2... he is her dad. I can't twist her arm. He has to earn it. Just as we have to call to Christ-our Father... "be my Dad!!! My Savior!! My Everything.!!!" That is what my husband is to Tory. Always there for her. Not one who might call once every 3 or so weeks. Imagine is Jesus was only around THAT MUCH??? WOW!!! How would life be?? We would be really sinking!! Jesus saw the actions... and my ex decided to give her to my husband for adoption.. I signed the papers day before our anniversary... so it is almost complete... what an anniversary gift from Jesus. And I will say--it is when we walk tight with Him, and don't waver. Don't snap. Don't let anger overflow our love for Jesus and all people. Because still today-my ex and I can still have a decent conversation, when we need to talk. So things work out amazing--when we hold on tight to Jesus--thru YEARS of a trial--or just days or months of one--HE GETS US THRU!!!! No pill will. No other "god". Nothing--but faith and prayer to Jesus, as you trust Him, and walk with Him tight--trying to be more and more like Him. Talk about an amazing God...WOW!! He has worked wonders in my life---and keeps working more. Setting up my 3rd brain surgery. That I know He is ready to control my seizures--thru faith. I love Him so much. He just amazes me--thru every great day, and hard day...know HE LOVE YOU EVERYDAY...
Sharing these stories... I am one very open soul.... I take all I go thru--and share it with all. I have come across so many I have been able to help because my mouth is so BIG.. about my illnesses, my faith, my ex, my life change today. Hiding all you go thru, doesn't help the one that could benefit GREATLY from your amazing faith, and knowledge of what issues you endure--yet still have faith!! Still are uplifting and loving. Not bitter, or angry. You can hold your hand out with the knowledge that will touch ones heart FOREVER. My MOUTH, ME, I am very transparent and open. Here for all... come to me on @EpilepsyCures and @AliveinMe on twitter.com
or http://epilepsycures.ning.com
or http://www.facebook.com/AliveinMe
or http://www.YouTube.com/Hetty4Christ

A few I'd love to see you at!! You all are blessings to me!!!!!

In His Grip,

Heather (Hetty) Siebens

The glory of God, and, as our only means to glorifying Him, the salvation of human souls, is the real business of life.
~C.S. Lewis

Whenever you are fed up with life, start writing: ink is the great cure for all human ills, as I have found out long ago.
~C.S. Lewis

One of my favorite books, yes it is: from 1955--- Harold and the Purple Crayon By Crockett Johnson :)