Greetings, I have had several people suggest that we send an update letting people know who we are and what our family does as well as a more detailed update on Robbie’s current medical condition. The people who are suggesting this know us well but also know that these updates are getting forwarded to many, many people who don’t know us. Of the 2,500 people in Robbie’s Facebook prayer site alone, I think I only know about 500 of them!
Tanja and I have been married almost 20 years. We have three children. Shelby is a vibrant joyful outgoing 15-year-old girl who loves the Lord and wants everyone to know him. Bethany is our gentle and creative 12-year-old girl whose sweet-spirit spreads God’s peace and calm with whomever she is with. Robbie probably needs no introduction to those who read these updates, but he has been our active fun-loving 11-year-old boy who loves righteousness and whose mind is always thinking about 100 different things at once.
My family has happily lived a somewhat nomadic life as God has called us into ministry in different places in California and Arkansas. Most recently we were blessed to be involved in a young church plant in Northwest Arkansas - New Heights Church. God poured His hand of blessing over New Heights and it has grown from a few families to around 1,500 in the past 7 years. This time was truly a ministry dream-come-true but, in the church’s fourth year of existence, we received a surprisingly clear calling to live and work among an unreached people group in a remote part of Asia. With the blessing of our leaders at New Heights, we left in 2007 to live and work among these materially and spiritually impoverished peoples. We have been back in the states since October to help build up and train a team to join us over there.
Robbie first became ill in early December and had what looked like a light flu, then something similar to hand, foot & mouth disease, then something like mono, tired and lethargic. One afternoon, he woke up from a nap and was hurting all over and struggled to speak and retain liquid in his mouth. That is when we rushed him to Arkansas Children’s hospital. Five weeks later, we are still here.
Robbie has had swelling in the inner part of his brain, around the baso-ganglia which controls motor-skills. He basically has some type of encephalitis or something very similar though they still do not know exactly what. They believe it is NOT bacterial but viral, though they don’t really know the cause. They were first focused on two main things: 1) relieving his pain and spasms which racked his entire body unceasingly & 2) supporting the bodies fight against this virus and swelling. He spent almost two weeks totally racked with pain every waking moment, some days the pain, cramps and spasms were from head to toe.
He now has his pain MUCH more under control though he still has long hard days. We believe the body is winning this fight and he is now in rehab. The struggle is to try to find the right balance of meds (keeping him out of pain and relaxing his spasms) while still keeping him awake and alert enough so that he can do a rigorous regimen of speech therapy, occupational therapy and physical therapy.
Because of the lack of significant progress of tongue movement and ability to eat and drink, he had a feeding tube surgically inserted into his stomach. This allows for less annoyance in his nose and throat and more mobility for his other therapies. He can come home with this tube and we can actually feed him ourselves though we pray that his ability to eat comes soon. Our whole family has committed to not eating mexican food until he can eat with us!
He is still unable to stand without assistance and is in much pain when he stands or walks. He can move himself around better. He struggles with straightening out his hands to grab things or point (they are almost always curled up in a fist) and can not twist his arms around palm up. Likewise, his feet are pointed down, toes curled tightly and he is unable to touch his heels to the ground while trying to stand. He also struggles to sit up and is unable to support his head for more than a few seconds.
We just had a conference this morning with our doctors, nurses and therapy team. They feel that he has a least a few weeks more in the hospital and then a potential long road ahead of therapy - speech, physical and occupational. We are not surprised to hear this but are also praying that God moves and blows their estimates to shambles.
Thank you for all your prayers and support. We are still asking for no unscheduled visitors at this point so our energies can be spent helping Robbie focus his energies on therapy, recovery and rest.
God bless you,
Ken and Tanja