Close to my 5 yr Anniversary of 3rd AWAKE brain surgery

Very Painful 1st day 24 hours after the in depth grids were placed in.
Trying to smile to show my love to all!

WIRED UP from Hetty Siebens on Vimeo.

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 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 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