My Daughter Savannah and Epilepsy: One Year After Brain Surgery.

I have been reluctant to make any type of post with regard to my daughter Savannah's struggle with epilepsy, not out of pride mind you, but because I did not want the social scars that may have come for her as a result of making her condition public. I guess it is a parent protection thing. If you are a parent, you understand.
I changed my mind last night, after almost 2 years since she had her first seizures and was subsequently diagnosed with epilepsy. I will share more about why I now have the courage to post our story later. Here is a picture of Savannah prior to her first surgery.




Our lives were relatively smooth going until April of 2007 when she had what was to be the first of many Grand-mal seizures. Savannah was 13 at the time and was considered to be in great health with no physical problems other than being diagnosed with Dyslexia in the 3rd grade. This slowed her learning cycle, but she was still able to hold a B - C average. Then in mid April, my 13 year old daughter began to have siezures that came out of the clear blue. We immediately took her to Cook's Childrens Hospital in Fort Worth for evaluation. They put her on some anti-seizure medication and sent us home. We were naive and comforted by the fact that we thought the medication would solve all of our problems. We were sadly mistaken. While on the medications, she had several more seizures and they were coming now at a rate of about 1 per week. Back and forth to a specialist at Cook's resulted in many different changes in medications. Some that turned her into a zombie, some that made her lose weight like a drug addict, some that made her gain weight, some that caused severe outbreaks of pimples (not a good thing for teenage girls)! The seizures were still happening and the pace was increasing to several a week. The last half of her 8th grade year is best described as tortuous for her, the school and our family. Her grades were devastated, the frequency of her seizures while at school had her teachers and friends on edge while they were around her, not to mention the mad dashes Staci and I would make from our home or office when the school would call to let us know of another seizure. We were all frustrated at this point. The Doctors at Cook's informed us that the meds were the best that they could do, and by this time, almost a year later, she was at the maximum "safe" dosage. Her seizure activity continued to increase to a pace of one or more per day, even on the higher dosage. It was getting away from us and it was beginning to take its toll on Savannah's memory and abilities to function as a normal child. Her seizures were now best described as 30 second to 2 minute periods of blank staring and spontaneous actions. One example that really put us on edge is when we would be driving in the car and she would have a seizure, unbuckle her seat belt and try to get out of the moving vehicle. We had entered what I call "Emotional Terrorism". We never knew when they were coming, the threat was always there and no matter what you were doing at the time, it was like hitting a "reset" button on your life.

During this time, we continued to Pray daily for healing and guidance. Faith in God and his love and direction for us is strong in our family and we lean hard on his promises during these times. We all tried hard to maintain our schedules, Savannah had her small group at church for support while Staci and I continued to lead a small group at our home. Our church Grace Fellowship in Paradise, Texas has continued to supply us with encouragement from many different people and resources. One of them was allowing us to serve as small group or what we call Home Team leaders/hosts. One of the couples in our home team is a childhood friend of mine, Rod Dearing. Rod has a great testimony of a personal struggle with an injury he sustained and the frustrations of dealing with a number of doctors and diagnosis. Rod's personal story is significant because as he lived life with us in our small group, he felt called and equipped to help us with our struggle. During this time Staci and I received all kinds of advice and remedies for Savannah's situation, but it was Rod's authentic "been there done that" God given testimony that rang clear to us. Rod encouraged us not to "settle" with what the Cook's Doctors had told us, but to find a good second opinion, or a third, fourth, fifth etc.. in other word's he encouraged us never to "settle". Rod even went out of his way and took his own time to do research on Savannah's situation and eventually he came up with a contact name and number that he gave to us to try. That contact led us to Dr. Gretchen Von Allmen at Memorial Hermann Children's Hospital in Houston. The doctor agreed to see Savannah and give her an evaluation in July 08. Upon her evaluation, she recommended to us that Savannah undergo surgery to remove the parts of her brain that were causing the seizures. Staci and I were at peace that this was the direction that we were to go. We researched and researched, we know more about Epilepsy and Brain surgery than what anybody outside of the surgeons themselves should know. The date for the first of two surgeries was set, February 03, 2009. Just a couple of days after her 15th birthday.

To say that we did not have butterflys in our stomachs at this point would be a lie. We arrived in Houston on Saturday January 31st so that we could be admitted to the hospital first thing Sunday morning. The next couple of weeks was to be a blur for us. The planned procedure was as follows:

We will check into the Epilepsy Monitoring Unit (EMU) at Memorial Hermann - Texas Medical Center on Sunday Feb 1. Savannah will have another Video EEG for the two days prior to surgery. The Dr. wants as much current info as possible. On Tuesday the 3rd, she will go into surgery between 8 and 8:30 am. During surgery, they will implant electrodes directly onto both the left and right sides of the brain in areas that have shown abnormal activity. They tell us that the surgery will last approx 6 hrs. Immediately after, she will go to MRI, then recovery and hopefully be in an ICU room by 5:00 pm. She will be in ICU for 24 hrs and then she will be moved back to the EMU where she will be monitored 24/7 for seizure activity. The Dr's are looking for at least 5 "typical" seizures so that they can pinpoint the exact location of the seizure onset. If all goes well, Savannah will go back into surgery on Feb 10th. This time, the Dr's will actually go in and remove the area of the brain where the seizures are originating. After this, she will go back to ICU for 24 to 48 hrs, then back to the EMU. They tell us that if everything goes according to schedule, they usually discharge 5 to 7 days after the second surgery. Hopefully we will be home on Sunday the 15th.

All went well according to the plan and schedule above. The doctors removed a good part of her Right Front Lobe and a part of her Right Perontal Lobe (about the size of a womans fist). Savannah is fortunate not to have had any complete loss of motor function. Praise God, as this was a possibility that Staci and I were trying to prepare for. What we were not prepared for was what the doctors have told us will be a temporary condition that will heal with time and therapy. Savannah came out of surgery with left side paralysis and what Staci and I feel is an quirky loss of inhibitions with her manners and language. In the days since the surgery, we have seen increased recovery of her left side mobility. Her left leg and arm have improved the most while her face and speech seem to be a little slower in progress. Progress is Progress in our family and we are thankful for every day God has given us to serve. Praise God as it has been one week today since the surgery and she has been seizure free! The doctors cautioned us to expect a possible seizure at some time as the brain continues to heal, we will celebrate on a moment to moment basis, trusting God's love and mercy. Below I will use this blog as an update tracking her progress.

Now, for the reason I decided to post this publicly. Last night, I was taking some phone calls from customers looking for places to hunt when I received a call from a total stranger. While we were talking, Savannah squealed in pain from some of the complications of her surgery. I dropped the phone and rushed to her side. I had forgotten to hang up the phone, so the older gentleman on the phone was able to listened in as Savannah and I talked her down from her pain. At some point, he hung up the phone. When all was well with Savannah, I called him back to briefly explain why I dropped the phone without hanging up. It was at that time that he shared an encouraging "God sent" testimony. He told me that when his own grand daughter was 13 that she experienced the same thing and without knowing the details of Savannah's situation he went on to tell me that she had sudden seizures and that they were not controlled with medications and that they opted for brain surgery as well. His grand daughter Katie is now 20 years old and is seizure free and attending college on a volleyball scholarship. Some people say coincidence, I say it was God sent because he knows my heart and he loves us. I looked up Katie's picture on the internet and shared the story with Savannah and our family. Full of tears, we all acknowledge God's hand in loving on us and letting us know we are on the right path.

Through this life trial, people have continued to ask us "How are we handling it" to which we respond, "By giving it to God to handle because it is way too heavy for us to carry on our own". God responds by sending us people in our lives and by giving us the clarity/courage to follow his directions when we meet them. While our journey is far from over and I am sure that the rest of our lives will be full of trials, we are at peace and we stand on God's promises for us. On behalf of Savannah and the whole Huggins Family, we are THANKFUL for the thousands of people from all over the world that have continued to pray for her even though they do not know her. The Power of Prayer Works! Savannah is living proof. We thank each and every one of you for continued prayers, and we look forward to returning the favor.

February 17th. Savannah met with her 3 therapists for evaluation today and she just returned home exhausted. While small, we have seen improvement in her speech today over yesterday and the day before. Yep...Progress...

February 19th, Savannah is working hard. She spends 4 hours per day in therapy. We are seeing progress daily. It is apparent to us that this will take awhile longer than what we expected, but we remain confident of full recovery. Even a little progress... is still considered progress.

February 24th, Savannah is still working. We are so proud of her. We are so thankful that God is good and prayer works. When we returned home just over a week ago from the hospital, we rated Savannah on a scale of 1-10 for her recovery, with 10 being a 100% full recovery back to normal. A week ago, she rated a 2. She could not walk without assistance and she could barely talk. Today, she was rated at a 7! She is running up the stairs on her own and I can carry on a conversation that she can keep up with. Glory to God, and Thank you to all of you prayer warriors out there!

March 03, No news is good news. Savannah is still working hard at the therapists. All of them have noted her great progress from just a few weeks ago. Physically, she is coming back quickly, while she is still not ready to run any races, she can get up and down the stairs on her own. Her hand and arm strength continue to improve as well. As she begins to get more mobile around the house, we can see some areas that she will need continued work on. Her short term memory seems to be the largest obstacle at this point. Please pray for Staci and I that we may have patience with her as we attempt to sort out shortcomings that we see. It is hard to determine at this point what are surgery created or just normal teenage daughter issues! We are giving God the Glory that she has not had a seizure since the surgery! Again, we Thank each and every one of you for your actions and your prayers for Savannah and the rest of our family.

March 12, 2009. Great News! Savannah was told by all three therapists (speech, physical and occupational) that she has recovered to the point where their services are no longer needed. Savannah's hair has grown back quickly and the stitches are coming out daily. Staci and I estimate that she is close to 90% of pre surgery status and this past Tuesday marked 30 days since the surgery and she is SEIZURE FREE! Dr. Von Allmen and Dr. Baumgartner make an incredible team down at Memorial Hermann in Houston. We returned this past week from our follow up visit and they are all amazed and excited about her progress. While in the waiting room, it was amazing to see some of the other children that have had the same surgeries. If that were not enough good news, Savannah returned back to Sylvan for her Algebra tutoring and after a short while, she was able to pick up almost where she left off. Incredible. She is working on her short term memory which has provided us with some interesting moments. She likes to cook her own meals, so we have had several stove top disasters recently when she has forgotten to turn off the heat. Good thing about Parental Supervision it keeps the House from burning down. Words cannot explain how Thankful we are for all of your prayers. We are witnessing a miracle and the glory goes to God. Join us today as we continue to pray for Savannah's healing, and as we praise God for the gifts he has given to all of us.

April 10, 2009 Continued Praises! It has been 60 days since the surgery and Savannah has been seizure free! We are very thankful to all of you that have continued to pray for our daughter. Her physical status is about 95% strength and we estimate about 90% of where she was mentally prior to the surgery. Her spirits are high and we are all working hard to see if she can complete her freshman year via home schooling so that she can return to Paradise High School as a sophmore next year. The daily ups and downs seem to be normal for a 15 year old girl. (I think they are ALL goofy!) . Our attitudes are guardedly optimistic for the future as we look forward to her continued progress. Again, we thank you all for your prayers for Savannah and the rest of our family. It has meant the world to us. We give God all the glory for the healing hand and comforting spirit he has given to us during this trial. GOD IS GOOD. ALL THE TIME!

June 01, 2009 We just left the Memorial Hermann, after visiting with Dr. Gretchen Von Allmen ( Savannah's Doctor) and they confirmed that Savannah is on a miracle pace for recovery. She seems as normal as a 15 year old girl can be. I feel she may even be more mentally alert than she was before her first seizure. She is enrolled to return back to Paradise High School as a sophmore in the fall and is already talking about cars, boys and very normal things! Glory to GOD! and a Huge Huggins THANK YOU to all of you prayer warriors! May you receive God's Richest Blessings for your faithfulness.

Savannah is recovering very well. It is possible that a reporter from the Houston Chronicle will be contacting us about her story. Remember folks, it was just about a year ago that we were amost out of options and we were told that her current medicines were about all that they could do for her (this was as her seizure activity continued to get worse and her short term memory was all but gone) As I look at my notes from last year, we were letting that Hopeless feeling creep into our spirits. My thoughts were directed towards long term health care for her and we were preparing to be her caretakers for life. We were allowing ourselves to "settle" for our situation. Again, we are Thankful that the Holy Spirit moved in Rod Dearing and then in us to bring HOPE back into our lives with an option that we did not know existed. We have always heard (and I have even taught others) that God wants us to turn over our troubled hearts to him, only with big risks can come big rewards. I would say that allowing Doctors to take out a fist sized portion of our daughters brain was a pretty big risk. I would also say, no matter what the future has in store for Savannah or ourselves, we will be forever changed for the positive because of our decision not to "settle" for what we could understand. Proverbs

5 Trust in the LORD with all your heart
and lean not on your own understanding;

6 in all your ways acknowledge him,
and he will make your paths straight.

We have been given our "reward" and we will be forever thankful for the gift of not only the last couple of months in Savannah's healing and recovery, but the real reward is seeing God work in our lives and in the lives of others by showing us "HOPE" to motivate us forward in our journey with HIM. I would call that the "straightening of our paths" portion of the reward. Often when I pray and when I hear the prayers of others, we all seem to get to the Lead, Guide and Direct portion of our prayers, sometimes without much thought of actually "seeing" where God wants us to go. His message to us is simple "Trust in HIM" and look for where he is at work in your life. Most times it is not where YOU would expect it to be.

Savannah is going to stay on her medications for the next 6 months (standard protocol) and we are to return for a check up again in January. Please share her story with those people that God puts in front of you so that they may have the gift of HOPE in thier current situations. God is Great! All the Time!

August 10th, 2009. Time to celebrate again! Today marks 6 months since Savannah's Surgery and since her last seizure. What a milestone! We have our daughter back! It is hard to type this without getting all choked up. God's Healing power is awesome! To Him we give all the glory. Staci and I wish to Thank all of you that prayed for Savannah and our family during this time. It is by your faith and HIs power that we celebrate today!

Savannah has been at work trying to catch up on over a years worth of school work. It is going to be close, but she is going to do it and be able to start with her Sophmore class at Paradise High School. To think how far she has come in such a short time is a miracle in itself. Physically she is progressing as well. She still has some left side weakness and coordination issues to improve upon. She is learning the lesson of humility as she builds her strength and stamina before she will be able to enjoy athletics. Other than that, she is a normal, goofy 15 year old girl that can text with the best of them and is starting to hound me about when she can get a car ( I am not sure I am ready for her to be on the road). The lesson in all this has been: God is Great, All the time. Faith Hope and Love are abundant and sustaining in a Christ followers life. We are honored to be loved by all of you.

ONE YEAR ANNIVERSARY February 10, 2010!

Well, where to start? I am a pretty intense guy, even by my own standards. I have been described by my friends as a Man's Man. However, when I sat down to write this a couple of days ago, I could not even get started as my emotions overflowed to the point where I could not get past typing the first three words. A tremendous range of emotions flooded my spirit, from intense pain and sadness for those that have ever had a loved one with a disability or disease, to the feeling of victory and accomplishment of a mountain climber that has just reached the summit. To God I give the Glory!

Enough about me. Let me tell you about "myvanna" as I call her. Savannah just celebrated her 16th birthday recently with friends that included taking a stretch Hummer limo to one of her favorite places to eat Hibachi Sushi in Grapevine and then took the limo to the movies to watch Avatar. She is as typical a 16 year old girl from the outside as I have ever seen. To meet her and visit with her, you would never know her story. Her disposition is very sweet and loving, she has a soft heart for just about everybody and everything! Staci and I are very proud of her. Her older brother Braxton and her younger sister Sage have not missed a sibling beat. If you have children, you know exactly what I mean.

Physically, she is maturing into a beautiful young lady. Spiritually, she has a servants heart and seems to enjoy serving others. Mentally, she is progressing at a slow and steady pace, and that is a good thing. Being mindful that within the last year, she has not only had to re-learn how to walk and talk, but she has also completed her entire Freshman year of high school while at the same time completing physical and speech therapy. She finished her Freshman year literally the week before she started back to public schools in Paradise as a Sophmore. (it's okay,say,"Praise God" out loud, I did!). For those of you that are detail people and want to know more about her current state of recovery, get in touch with me, Staci and I would be happy to share with you, my email is scott@hugit.com . At present, we are still discovering what Savannah may have lost with the removal of that portion of her brain. We are finding that Public schools may not be the answer for her continued education, while she is still making progress, it seems more difficult and frustrating than it needs to be. If you are a teacher or are in the public school, do not take that the wrong way. Paradise ISD is great for mainstream children. We have one child that has graduated and has gone on to college where he is on schedule to finish a 4 year International Business degree in only 3 years, yahoo, and we have another that is tops of the top in her class at all levels. We give a good portion of the credit to the faculty of Paradise ISD. The reality is, that not all Public schools have the resources to give individual attention to a child like Savannah. That is not the schools responsibility, it is the parents responsibility at that point. Staci and I understand that and accept it. So, one of our family goals is to get Savannah graduated from High School which will prove to be another mountain in itself.

It would be a mistake to not thank once again, the people over the last several years that have prayed, sacrificed and supported Savannah and our family over the last couple of years. My first thoughts turn to our Home Teams from our Grace Fellowship Church Family in Paradise, Texas, as we have been a part of several Home Teams over the last couple of years, there are way too many to name here, but you know who you are and WE THANK YOU. Specifically, I would like to personally thank Rod Dearing for the Courage and Stubborn spirit of "Never Give Up and Never Settle!" It was Rod, that found the staff at Memorial Hermann in Houston that perform this type of radical surgery for people with Epilepsy and then he pressed us to make contact with them. He did this on his own time and I will never forget it. Then to the Dr. Von Allmen and Dr. Baumgartner and the staff at Memorial Hermann. Your dedication to your vision and your contributions and sacrifices to help others will be wonderfully rewarded in heaven. To the nurses and support staff in the EMU, you are awesome. To our church staff. BJ, Jeremy, Rocky, Rick and everyone else that travelled to Houston to be with us. May the jewels in your crowns be too heavy to carry! to my Mom and Bill, Pat and Ed as well as my extended family and friends, thank you for your continued support and prayers. To Braxton and Sage, Thank you for your sacrifices of time and resources, you too will be rewarded in time. Almost lastly, but not the least at all. To my beautiful wife Staci, you have been incredible, amazing, super duper and more words that I will not list here. Talk about LOVE. I have watched you sacrifice so much for Savannah's care and well being, I have watched you carry burdens that no human should ever have to carry, but you have never looked away from the job at hand. It is amazing to be forever connected to such a wonderfully beautiful person on the inside and out. Thank you honey.

Appropriately, above all else, To GOD I give the Glory and my life to. Thank you Lord for what most would see as a major speed bump in life, but rather, you have given me the vision to see it as a launching ramp to grow closer to you. Believers are called to bring glory to God. In 1 Corinthians 10:31, the Apostle Paul exhorts, "So whether you eat or drink or whatever you do, do it all for the glory of God." Believers are called to give glory to God by what we say and do. It does not mean that we are adding to the glory God already has. It means we are revealing the glory of God to the world through our words, lifestyle, and behavior. It also means that we are giving God our praise and adoration.

How can believers bring glory and praise to our God? We can submit to God's will in all things, and be willing to suffer for Him (John 21:18-19). We are to be content with what God has given us (Philippians 4:11) and not worry, knowing God will take care of us (Philippians 4:19). We can rely on God for strength instead of relying on ourselves (Philippians 4:13). We can help others and give the glory to God by praising Him with our mouths. We are called to be selfless and humble (Philippians 2:3-4). We show love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self-control in our lives (Galatians 5:22-23). None of these things is easy, nor do they come naturally. But through faith in Jesus Christ, the transformation of our lives is possible. When we submit to His will, we bring glory to God. So, to that end, to GOD goes the Glory!

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Comment by Christopher King on June 14, 2010 at 7:31am
Scott,

The Huggin's family story is a great testimony to God, prayer, and the Body of Christ. Thanks for posting. -- Chris

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