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.
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.
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.
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!
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!