Walk and Roll, Josiah!
We need help. As difficult as it is to say those three words, we believe they are good words and true words and words we could all practice saying more often. Three years ago, our five-year-old son Josiah was diagnosed with cerebral palsy (CP) and is significantly affected. On September 10th, 2018, Josiah will undergo a major operation at Seattle Children’s Hospital called SDR to treat this. We are asking for help with the many related costs.
Selective Dorsal Rhizotomy (SDR) has dramatically improved the lives of thousands living with spastic CP (which has affected Josiah’s ability to walk, sit, eat and speak). While CP is technically non-progressive, the long-term wear and tear of spasticity (involuntary tightness) can be debilitating, causing pain and injury to the bones, muscles, tendons and joints. The time has come for spasticity to go!
The aim of this life-changing procedure is to remove or significantly reduce that spasticity (involuntary tightness) in his legs. Over time this can help Josiah build true muscle strength and improve his walking, help conserve energy, improve range of motion, allow him to focus more on fine motor skills, help him sit more comfortably, and can help him to eat and drink with less difficulty. It can also reduce the need for future orthopedic surgeries, reduce pain and strain caused by those overly-tight muscles, and help him do the things he wants to do with more ease! Josiah has always been a Go!-er who is full of determination and resilience. We want to give him a chance to move with more freedom!
Through endless research, sleepless nights, multiple trips to visit with the neurosurgeon and his team, second opinions and various confirmations, we’ve decided it would be unfair to deny Josiah this incredible opportunity. We believe the life-long benefits of SDR will be invaluable for him. While it is daunting, we are excited for Josiah and believe it is the right thing to do.
Josiah will be quite weak for a while after the surgery. It may take 6 months for him to start walking with support again. He will need an entire month of in-patient rehab and recovery in Seattle to begin to re-train his brain and learn to move and build the muscles that spasticity has denied him access to. We will all need to be there for the duration, so Joey will be taking the month off work (unpaid) to be there. While we are so thankful that this procedure will be covered by insurance, we will need help with the costs of living (in Seattle and at home while away) that are not covered.
In mid-October we will be returning home to Oregon where Josiah will be needing out-patient physical therapy 4-5 times a week for at least the first year post-op. We will also be doing a great deal of therapy at home. This high level of therapy is essential to receiving the most benefit from the surgery. Joey will need to reduce his work hours (and therefore our income) to participate and provide Christy, who experiences fibromyalgia, chronic pain and fatigue, with some relief. We will have plenty to keep up with.
We will need to drive to Salem for these necessary PT appointments. With the increased mileage on our vehicle, mobility devices for Josiah (including the need for a bigger wheelchair) and therapy equipment needed, our little old car is no longer able to meet our needs. We are in need of help to carry us through this difficult yet exciting journey ahead. We will need to cover the costs of meals, daily living expenses, therapy equipment, therapy visits that are not covered and help with providing a safe and reliable wheelchair-accessible vehicle for our son. If you are able to help in any way, we and Josiah say “Thank you!” and we appreciate your generosity, your time and your compassion!
Although the strains of raising a child who is “differently-abled” can be overwhelming at times, we and those in Josiah’s life are always learning from him and being encouraged by his presence and his very essence. He has totally transformed our family, our faith, the way we live and how we view this world. Born at 23 weeks in Ireland, he went through so much to be here, and we are so glad he is with us! The joy and light he brings is what keeps us going a lot of the time and we love him with all we’ve got!
The saying “It takes a village to raise a child,” is so true. Having been born so early though, Josiah’s immune system and lungs have needed extra time to develop and we’ve had to be pretty careful about germs. Sometimes we would try to make light of it by saying “It takes a village to raise a child, but the village is contagious!” There’s a sad truth to that humor. Our life has thus far needed to be somewhat isolated. Being removed from the village can get lonely. Common colds and viruses can still hit Josiah pretty hard, but he’s grown so much stronger and we’ve been getting out and about more. This journey of raising Josiah really does take a village. We recently had 10 hours of meetings with 15 specialists just to get him enrolled in Kindergarten for the fall! If you would like to join Josiah’s Village or have been there from Day One and would like to give towards this, we so appreciate you! Thank you for helping us on our long journey. Feel free to send us a message, a prayer, an encouragement. If you’d like an address for our time in Seattle or our home mailing address we’d be happy help. Josiah would love to get some mail!
A million thanks,
Joey, Christy and Josiah Rauwolf
