Jesus Heals

Epilepsy took a toll on me-for the past 2 years, 10 years, really all my life. But these last 2 years hit a toll - one that I thought I'd never make it thru--but God provides. Even when we do waver or think He has busted out on us---deep down we know better, which is why we bawl everytime we try to be BIG and tough and not need HIM!! We need Him for every thing-- or we wouldn't be breathing. I have been blessed with my 2nd go around family - we all love our Lord strongly-help pick the other up when down. Unfortunately when basically born with illness, the other very well- that person is doing most the "helping Up" in life. So illness is stressful as ever for us-- but is also beyond so for our family-- just remember that.

Gratefully since the two year battle of severe body pain I had after my 3rd awake brain surgery- I've gained blessings yet lost others due to the extreme cut out-- but have been healing from the extreme pain over the last two years-and almost instantly when we moved back to AZ-- for that I am ever so grateful!!

Healing Steps

Amen!!!


Tory's 9th birthday was such a blessing!!! Yes, she got the great gifts she loves... got the amazing family from mom and dad and uncle to her cousins and aunt she loves dearly!! She got all that love she adores-and was able to return it!! She is such a precious jewel from our true gift-Jesus Christ. He blessed us big time with such a precious soul like Tory.
I felt deep emotions for the first time in a long time. I just had to figure them out. The first were elated "happy" tears-that I was so well for THIS birthday for Tory. I've always put together good birthday's and great history of them all. But this was the FIRST since her birth I was seizure free-very well for. That grabbed tears of joy, as I took the pictures I had taken and made music videos. Her smiles were so amazing.
Then came tears of loss. Loss of time. Loss of what I would have done over the years had I been more "well." This struck me because I was going on a field trip with Tory. We had been counting down days. Yet the night before, Tory had the "if I can go" statement. And that shook me. Who told her I wasn't going? Did she not want me there? So I asked her why she still wondered if I'd make it. And it was because of how sick I have been over the years-not able to do as much, or always follow thru. My heart sank. She was so sweet about it. Just making sure I feel good and my head doesn't hurt bad from surgery. But THIS IS MY KID. I love she loves me like that. But she shouldn't worry if I am going now. I am well-and will strive to make it all. We just hugged and talked about the prior years. I let her know Jesus has His arms always wrapped around us.... and if anything changes, she is sure one strong kid with an amazing heart thru Christ. But give any worries to HIM and talk to me!!!!  :)  It was a great field trip after that.
It is amazing what having a long term illness can do to how other people live. It is something when is healed, that has to be talked about-on how all are feeling about it now. Big change both ways.
She is such a doll. But is also amazing what is in their thoughts-which is why Jesus likes us to pray. To love-to yoke-to bring up-and to LISTEN.
Sometimes can be hard to listen to your 9 year old when you already have your directions in mind. But we sure need to.
Love you all....


In His Grip,


Heather


@AliveinMe @EpilepsyCures

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!!

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.

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 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