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 :)

Epilepsy, questions, dealing with it

There are so many if's and's or but's on epilepsy... do's and don'ts ---we all differ---I can give you my perspective---many people have come my way with awesome questions and discussions on http://epilepsycures.ning.com They have touched my heart---along with the ones on twitter @EpilepsyCures !!!

Epilepsy Fear of having it

The more you are open to others about it---the more of an amazing help you are to sooooo many!!! I have learned that over the years- and found WOW-- how many are closed about it-- but when open-- it touches your heart-- and the people they are open to. I have met some amazing souls on my http://epilepsycures.ning.com account that have just touched my heart. Know you aren't alone and even not knowing you yet-touch my heart with your testimony!

Epilepsy amazing souls that are open

The more you are open to others about it---the more of an amazing help you are to sooooo many!!! I have learned that over the years- and found WOW-- how many are closed about it-- but when open-- it touches your heart-- and the people they are open to. I have met some amazing souls on my http://epilepsycures.ning.com account that have just touched my heart. Know you aren't alone and even not knowing you yet-touch my heart with your testimony!

Epilepsy will not rule you

Reaching out.....epilepsy will not rule you...there are so many ways to conquer..first is to have a positive outlook and amazing support. God has plans for you!!! Never forget that!!! I have been on all meds...going on my 3rd brain surgery...daughter has it too...but I know healing is taking place....and love to help others!!

Epilepsy Cans Cannots

Talking about some of the big warnings that doctors give to many people...when in reality #1 it is our choice... #2 it is truly all in God's hands... in my life one major thing in particular happened for an amazing reason... and with any warning given out there today... I would never think twice about it. Too much good came out of it all....

Epilepsy illnesses side effects other health conditions

We may have epilepsy, my child does too... but we are just as human as others. There are many answers and more to come. Cannot always blame epilepsy for everything, sometimes there is more tied in to the genes--such as my daughter. She has anxiety from my mother's side, ADHD from her biological father...so I just didn't get it when she was placed on an IEP in school---as for I was passing just fine, and on a much strong med... and my seizures weren't controlled. But we have to realize there is a reason for everything-and to know He gives us strength. My heightened time is prior that time of the month... I will have 10 more seizures than normal. So women out there... might want to log theirs.

Epilepsy connections---amazing soul--keep coming!

I have met SOOOO many amazing people on twitter...naming just a few on here to start...we all need to connect more--talk more out. And get others who aren't--connected!! Amazing blog humbled me big today--Jesus works wonders in all circumstances.

Epilepsy pull backs-recommended books-children IEP's and ADHD

Sometimes epilepsy and the medication can hold you or your child back intellectually...sometimes there is more to the case. My kid has a biological dad that has severe ADHD...she hasn't been classified with that-even with a neuropsych test---but a small dose of Focalin has changed her grades in 2 days time. A few books a also tated on here...that amazed me a while ago...

Epilepsy-devices, prayers, surgery, faith

There are answers-don't let it drag you down...epilepsy is not a demon in you...it effects the CNS--and the meds do too...but faith is what helps you out of it-depression can be conquered!

Epilepsy-illnesses-let's talk it out!

Epilepsy is my speciality...going on my 3rd brain surgery--over 31 yrs of epilepsy...all meds I have taken, and side effects gone thru. Many other illnesses I do have..but don't get the better of me-would love to talk it out...reach out and help. Blessings!

What are auras? Generalized-or Partial?

There are so many types of feelings from auras...I explained a few of mine in this--what to look for in others--and category of seizures--which side of the brain is affected..

Wearing the others shoes...

We must remember...it is hard to be an epileptic....but it is very hard....to be the spouse, child, or close friend, loved one---of the epileptic. Briefing on my hubby, who I wll be inviting shortly to talk too!

Working thru Seizures

Amazing the few I described in here...how I was completely watched over. How I became addicted to one drug that would cure them, and I wouldn't have to have a 3rd brain surgery. How to help your kids who have seizures-still live the "normal" life....grab a hold..please talk with me. Blessings!