Learning to Walk … Again

Our blog and social media sites have gone dark for a few months as we have been focused on the development and implementation of new therapy programs for Eli’s recovery.

Many thanks to all of you who have been praying for Eli and our family!  God is answering those prayers!  Though, we still have a long way to go.

Learning to Walk for the Third Time

Like most kids, Eli first learned to walk when he was about a year old.

Little Eli using his walker.

After the accident, we tried braces and walkers.  Eventually, he learned to walk with just a cane.  Though, he never walked well with his cane.  A day in the park, a trip to a concert, or any outing that required walking long distances, have all required a wheelchair ever since the accident.  When he did walk, his knees were bent.  Most people can’t walk but a few steps like that!  He was so unstable that he fell regularly causing additional short-term injuries.

Walking well has been “the thing” that we have prayed for most since he was injured.  It seems like that would make his other deficiencies better.  It’s difficult to explain, but we’ve had a spiritual battle tied to this physical battle.  When he’s not walking, Tricia’s and my faith is just not as strong.  We know that shouldn’t be true, but it is.  We still know that God is good.  It’s just hard to watch your child struggle in that way.

He has now been confined to his wheelchair for several months.  As his teenage body has grown, his physical structure is no longer strong enough to support the crooked walking that he has been doing since the accident.

In 2012 and 2013, it became increasingly difficult for him to walk.  We did intensive physical therapy but it failed to have positive long-term results.  In September 2013, Eli had ankle surgery that should produce great results.  What we didn’t understand, until recently, was that the ankle surgery was just the first step in a long process toward walking again.  Since then, we’ve taken him for revisits to his doctors and therapists at the Family Hope Center in Philadelphia who have given us an intensive home-based therapy program from which we expect positive results.

The end objective is to get Eli standing straight and strong, then walking straighter, more stable and better than he ever has before.  So there really isn’t a sum of money or an amount of work that is too high to pay.

We just want our son to walk again.    

Eli hangin’ around on the inversion board.

His program includes good nutrition, oxygenation, creeping on his hands and knees, crawling on his belly and hanging upside-down on an inversion board.  Each piece of the program has a specific purpose and objective.

We still don’t know how long it will take to get him walking again.  What we do know is that his therapy is very expensive and requires a lot of hard work from both Eli and Tricia.  As an example, Eli creeps on his hands and knees in circles up to 1000 meters (that’s ten football fields) daily!

In this storm-filled life, though, there are several positives for which we are thankful.  Several months ago we hired Eli’s home therapy assistant, Miss Ciera, who comes weekday afternoons to work with Eli.  We couldn’t do therapy at this pace without her!

Eli’s attitude continues to be stellar through all of this.  He WANTS to walk again.    It’s his motivation that keeps us all working like it depends on us and praying like it depends on God.

 Controlling Seizures

For several years, as a result of his brain injury, Eli has suffered from absence (pronounced: “ab-sonce”) seizures.  Without warning, his body will tense-up and his brain reboots like a computer.  When he comes to, a minute or two later, he usually doesn’t remember where he is or how he got there.  His neurologist is very concerned about this because, left untreated, the seizures can get worse and cause additional long-term neurological issues.

He’s been on two seizure medications for a year, but the seizures aren’t slowing down.  They have increased to at least 15-20 times per month.  Additionally, the side effects from the seizure meds slow down his brain and worsen his already impaired short-term memory.  At times, this has made homeschool an impossible task because he would learn a concept and promptly forget it by the next day!

Pastor Jerimy visiting Eli and his stuffed Doug during his seizure study.

To find a better treatment for his seizures, Eli’s neurologist prescribed an inpatient sleep-deprivation study in January 2014.  The objective was to monitor his brain waves and video his physical reactions during seizures.  More than 30 probes were glued to his head.  The thin wires from each probe were tied together like a pony-tail and plugged into a pack that was slung onto his shoulder.  A cable ran from the pack to a wall outlet, tethering him to the wall for the duration of the three-day study!

At one point during the study, Eli was required to stay awake for 35 of 39 hours!  Ironically, the good news is that the sleep deprivation caused enough seizures that the doctors were able to make a clear diagnosis.  This resulted in changing one of his two seizure meds.

The GREAT news is that tapering him off of one of the medicines has greatly reduced the side effects.  He is more alert, more energetic and able to think more clearly.  However, the number of seizures has not significantly decreased.

Please continue to pray for healing that will eliminate the seizures.

Family Ministry Update

In 2013, John started back into his real estate sales career to support our family after two years away to launch Tiller Family Ministries.  This year, John has also gone back to leading his real estate company as Principal Broker.

Even with all that’s happening with Eli’s recovery and John’s work, we know that God has given us this family ministry to spread our message of hope even further!

We are are limiting our speaking engagements so that we can focus on writing the book about our story.  Lord willing, we’ll choose a publisher this summer and the book will be released in 2015.  We’re super-excited believing that God will use the book to help many more people!

Thank you from the bottom of our hearts for your continued support of our family and our ministry.  Most of all, thanks for continuing to pray for Eli’s recovery!

If you’d like to give Eli some encouragement, please feel free to leave a comment below…

Please note: We reserve the right to delete comments that are offensive or off-topic.

  • TheLeopardz

    It is the the abrasion of the sandpaper of life that gives the master’s smooth finish to the finest furniture. Thank you all for being a great example of endurance and faith hard circumstances. People believe they can move forward with new strength because they see you doing it with God’s strength.

  • Mista Chad

    Eli. Even after you get those feet and legs groovin, we still need to get your Dad to build an small block engine to mount to the wheelchair. Burn outs and wheelies in PowerJam

    You da man!

    Mista Chad

  • Dave Pollard

    Your a inspiration to me and my family Eli, stay strong and stay close to Jesus! When is your next cd coming out?

  • Brian Hall

    Thank you John, for the update. Eli is in our thoughts! I am glad to see you back as principle and I look forward to seeing you at convention if not before.

  • Robbin Blankenship

    Eli—I remember those times some 25+ years after my injury. Life gets better and better each day. It is a long process to recovery from such a devastating injury, but it is well worth all the pain and hard work. Keep your spirits up, depend on the Lord, remember he is the great healer.

  • Maureen Schmidt

    Eli….you don’t know me, but I know know your dad and have followed your progress for a long time. I am praying for you in several ways 1) praying you continue to have the motivation and the strength to keep fighting – you WILL walk again! 2) praying for your mom & dad to stay strong and positive for you 3) God has blessed you abundantly, and I pray that you are feeling His presence and His comfort each & every day. You are LOVED by so many! Keep on “keepin’ on”!

  • John Newton

    Thank you for this update, John and Tricia. Jill and I always appreciate you. Wild to think that thousands (more?) people watch your family conviction. Our kids receive every Eli update… And your ministry magnet greets us on our refridgerator every day :-) Love you and your son, and pray for your determined journey.

  • Cristy Hill

    Eli,
    You truly are an inspiration to those with whom you have shared your story! I remember when your family came to our church and you sang so beautifully. It’s hard to believe that little boy is now a young man- look how tall you’ve grown! You’re such a determined person- I can’t wait to read that you’re walking and reaching all the goals that you’re striving so hard to attain!

  • Susan and Ed Snowa

    Eli, We continue to pray for you! We praise God for how far you have come, and we look forward to seeing all the progress you will make in the future. God is good, and we know He loves you so! Keep up the hard work, buddy!

  • Robert Martin

    Hey Eli,

    I have not been able to see you in a long time, but I pray for you often. I still believe that you will run again like I saw you so long ago. You have some great parents, and I love you all.

  • tamara tatum

    Way to go Eli!! So proud of your courageous determination and trust in Jesus. I had hoped to come see you when you were at MCV for your study but every day I was in the picu when you were there it was too busy for me to leave. I have told many long term picu nurses like me about getting to see you when you spoke at ironbridge bapt last year. Many remembered you and are thrilled to hear how well you are doing. You are in my prayers and I know God will continue to do amazing things through you. Much love…..nurse Tamara.

  • Kevin Adams

    Eli, I have never met you or even heard your testimony. As I read this update by your parents I was drawn to your music in particular the song “Nothing is Impossible”. In the midst of challenges that exceed most experienced by others in a lifetime, God seems to have given you a strength and insight that far exceeds your years. There are others that “have it all” in but do not have the peace that you seem to have. I hope and pray that God continues to give you the strength to run the race that is set out before you. God bless you !

  • Jenn Fleming

    Eli, you are an inspiration to all of us. Your persistence and positive attitude is a testimony. I hope you are still singing because I loved the songs you sang and posted on iTunes. We are praying for you and your family.

  • Sharon M. Bohn

    Eli, you don’t know me but I know your Dad from Real Estate. He was my Real Estate teacher back in 2005. Wonderful person he is! I am so inspired by your story and your positive attitude in life. Keep up the hard work. Prayers from Doswell, Virginia.

  • Alvin & Cindy Tinsley

    Eli, Alvin and I have been praying for you throughout the years. Know that you are a Light for the Lord and He has used your story and your experiences to touch many lives along your journey in life.. Continue to shine your light and keep running the race. You are a blessing to us all. Love and Prayers, Alvin and Cindy Tinsley

  • Tony Stoddard

    Eli, I’ve got nothing for you that hasn’t already been said as encouragement. Just don’t. Sorry. But I do want you to know that you and your family have been and continue to be an encouragement and blessing to ME. You and your mom always have a big smile and handshake for me anytime we meet. And your dad has been a trustworthy and dependable consultant for me for many years now. My world is so much better for knowing you and your family. Thanks.
    Tony and Beth.

  • Dreal

    Eli,keep up the work. In reading ISAIAH 40:31 we are taught that : “But those who hope in the LORD will renew their strength. They will soar on wings like Eagles;they will run and not grow weary they will WALK and not be faint” Take care Eli and GOD Bless ,Darrl

  • Tammy

    Eli, the Bible says many are called few are chosen. God chooses those He knows will glorify Him through the storm. You have touched so many lives through this storm. Job like you went through very difficult pain but he held on to his faith. May you never lose faith and may you never forget that God is with you every step of the way. I am blessed to see how God is using you to bless others. May the Lord comfort you your mom and dad. Stregthen each of you for what He has ahead for you. Know that you are loved. My heart breaks for the suffering you and your family have endured and yet my heart rejoices as I see God through you. Never lose sight. God bless you all. Love in Christ Tammy Hall

  • Stacie McCallister

    You are amazing people, Eli, Tricia and John. Your journey encourages all of us. Has your neurologist suggested or discussed pros and cons of a vagus nerve stimulator (VNS). We’ve seen incredible results with it at MCV. I’m more familiar with it in adults. Don’t know if its appropriate for Eli, but may be worth asking about.

    • http://www.TillerFamily.org/ Tricia Tiller

      Stacie, we had a neuro-chiropractor mention it to us, but when I brought it up with the neurologist, he didn’t seem to think much of it. I don’t know why, though. I may look into that some more if this new medication doesn’t help. Thanks!

  • Kathy Cantrell

    Eli,

    You are such an inspiration to me…through you, I see God’s glory! You know how big our God is and He is using you, and your Mom & Dad to touch so many lives! Nothing is impossible for Him, as you so beautifully demonstrate. Know that you are in my prayers daily and that I send my love to you and your Mom and Dad who are amazing just as Jesus is AMAZING!!!
    Love, Kathy Cantrell

  • Robin Swann

    Eli,
    I know it’s hard to hear everyday over and over that you have suffered for a greater good, something that God will do through you….. because you are the one that has to live it. But Eli, you are an inspiration to so many, including us, and many lives have been touched because of you and your beautiful family. We enjoy your smiles and you encourage us in ways we can’t explain. Keep being you and we will keep praying for you and I know God will have you walking and telling a bigger story one day! Love to you all,

    Robin & Robbie Swann

  • disqus_sxzG96w5VI

    Eli – we were so blessed to have you visit PCF last year and inspire us all. We continue to pray for you – God is great and can do all things! Keep the faith!
    Love,
    The DeLongs

  • Sherry Patterson Dudley

    I am sure you guys have researched every possibility but I didn’t want to assume….as the mother of a sick child and personally suffering from severe treatment resistant depression I have learned to research medication/treatments for off-label use. If it hasn’t been approved by the FDA for specific conditions they are not allowed to mention it in the trials. Most medication/treatments for depression started as treatments for seizures…..TMS (transcranial magnetic stimulation)….which is approved for treatment of depression is starting trial for treatment of seizures. If not helpful now??….maybe with future developments???? Worth following and praying for!

    • http://www.TillerFamily.org/ Tricia Tiller

      Thank you, Sherry, for mentioning this. I will do some research on TMS. I like to be aware of all the options out there.

      • Sherry Patterson Dudley

        Of course, I hope it’s helpful. I am a medical coder. Although my specialty is in ob/gyn and not head injuries my skills are in the denied claims and appeals department. I don’t know which insurance company you use but if there is ever any research or claim issues that you need help with please feel free to call me. Sincerely!!! I will do what ever I can to help!!!! sherrydudley@yahoo.com or 804-403-3992. This is not a burden that you have to bare alone. My daughter was extremely sick and I had to quit work to take care of her. We were making daily visits to the Children’s Hospital and procedure after procedure….I personally know how it weighs on a Mother’s heart and soul. Please call me if I can help in any way!!

        • http://TillerFamily.org/ John Tiller

          Sherry, You do have unique insight. Thanks for being on here for us!

  • Marianne Takacs

    Just a note of encouragement to ‘keep on keeping’ on’… lest this sounds trite, know that it comes from a mom whose now 25 year old daughter was diagnosed with late stage chronic & acute Lyme disease at age 9. Our story of fighting through the battle was over a 5 year time period. I can identify with your statement that when your son isn’t doing well, you aren’t doing well either~ I experienced that as well, despite trusting God. By the time my daughter was diagnosed, she wasn’t able to walk and was told she most likely wouldn’t walk again. But her faith in God kept her believing she would (and she does now)! My daughter and I also wrote a book together, ‘Hope In The Midst, 30 Devotions of Comfort and Inspiration.’ In it we share our struggles and triumphs, through God’s constantly reaching out through others to show us He was/is our hope in the midst of our circumstances. We also have the privilege of speaking about our story. My career now and ministry work is about sharing the hope God has given me with others. So, as I started with, ‘keep on keeping’ on’… God is with you all and has given you the vision for a book and to share His message of Hope and He will be faithful to complete what He has begun! If you are interested in seeing our story, you can go to the link below- ( you may need to copy & paste the URL)for an interview that was done last summer with The 700 Club. I hope you will be encouraged by our story, as you have encouraged me and many others!
    Blessings of life & God’s precious comfort to your family.
    Marianne Takacs
    http://www.cbn.com/tv/2736238685001

    • http://TillerFamily.org/ John Tiller

      Wow, Marianne! Thanks for sharing. I checked out your website and the CBN video. Your story and your ministry are an inspiration to us!!

  • Pam

    You visited Grey Stone in Durham a few years ago, and I have kept your card as a reminder to pray for your family. I will never forget Eli’s sweet voice singing “I Will Rise”, and every time I hear it I think of ya’ll. Bless your sweet family.

    • http://www.TillerFamily.org/ Tricia Tiller

      Pam, thank you so much for your prayers! We have sweet memories of our visit. Many blessings to you and everyone there at Grey Stone!

  • nathan staples

    eli,my name is nathan staples.i was diagnosed with guillain barre syndrome @ 19.it took years to recover in the meantime though i raised 3 children.today @ 40 i’m still giving it my all…drop me a line if you need an ear to listen or have a question…the life i’ve had since birth i could write a best selling book about…i’ve seen it,did it and experienced alot.take care.ttys.FAITH.