Josiah’s Story

Site created on September 20, 2010

Hi! My name is Josiah and I am eleven years old. I am cheerful, feisty and very funny! I love to build legos, create games for us all to play and I have an active imagination. I love my Daddy (Shawn), Mommy (Dana) and my big sister (Dara). I was born with a rare combination of lower spinal abnormalities. I have had eight surgeries from the time I was 2-7yrs old. The first four surgeries were orthopedic and done to stabilize the structure of my lower spine and preserve my ability to walk. The fifth and the sixth surgeries were done by my neurosurgeon to address several issues I have going on inside my spinal cord. The seventh one was a frontalectomy (tongue tied- so they clipped my tongue tissue underneath to release my tongue- it's so much better now!). The 8th surgery was to rebuild my left foot that got deformed over several years due to a nerve function complication after my first surgery. For the past couple years my back has been stable and I haven't had to have any surgeries but the doctors keep a close watch on me to make sure my spine is doing ok while I'm growing lots and lots. Thank you for praying for me and my family and following along my journey!

If you would like to read more about Josiah's story and the journey we've been on since we found out about his condition, you can read back through all of our journal entries here on Caring Bridge.  If you'd like to read about how we found out about his condition after he was born to the age of about two - then go HERE (http://shawnklinkner.blogspot.com) and read back through the posts. Thank you for caring about Josiah's journey.

Newest Update

Journal entry by Shawn & Dana Klinkner

Thank you for praying for us this past week for Josiah’s MRI! 

Dr. Baird, Josiah’s neurosurgeon said his spinal cord looks really good. It is NOT tethered in the lower lumbar which was a concern prior to him going into his next big growth spurt. That means no surgery is required, what a huge relief!!! And the syrinx (pocket of fluid) in his upper back stayed the same- same exact width and height as last year. It’s been two years now that it’s stayed the same which is good. Ideally we want it to go away but the fact that it is stable is positive. Dr. Baird said because everything has been stable the past couple years, she doesn’t need to see him again for 3 years! Wait, what? Amazing! It was weird when she said that because we’re so used to seeing doctors every year or multiple times a year so it’s a foreign concept to go that long without an appointment but one that we’re happy to embrace. Of course she did explain symptoms to be aware of if the syrinx were to change and if that happens we would contact her so she could see Josiah sooner. She also explained that usually the spinal cord fibers don’t have any issues during growth spurts and that it’s mainly the structure they need to watch closely and Josiah’s doctor at Shriners will monitor that. It was wonderful to see Dr. Baird and we are SO thankful for this good report.  

Josiah was a champ like usual- he amazes me! They asked Josiah if he would be willing to try doing the MRI without sedation. He’s right around the age where they start seeing if the kids can handle it awake. He wanted to try it so I went into the MRI room with him and they attempted several of the pictures but he was still too wiggly. So back to the pediatric sedation area we went, got his IV placed (thankfully the first time), he got put to sleep and they took him back to the MRI while Shawn & I waited in the waiting room. 

Things on the adult side of things were a bit rough for Shawn & I on this visit. The MRI order was put in wrong and we had to advocate pretty intensely for them to change it and do a full-spine (like he’s had done since he was two), instead of just the lower lumbar like the order said. After multiple calls to Dr. Baird’s office and having to deal with a resident that insisted he knew better, we were finally able to talk directly with Dr. Baird who confirmed that yes, she wanted the full spine MRI to be done. It was tough to stand our ground and feel like we were holding things up and being a bother. But anytime we are receiving medical care it’s important for us to be an active, engaged patient and to clearly communicate what we know about our health or the health of our child and to not back down if we are not getting the appropriate tests or care we need. It was a good lesson to remember. But after all the back and forth with the sedation and MRI stuff, Shawn and I sure were tired and glad to be headed home. 

Next up sometime in Aug/Sept we’ve got an appointment at Shriner’s with Josiah’s spinal specialist, Dr. Wellborne (the doc that replaced Dr. d’Amato). She will check his spinal structure and monitor him for scoliosis or other spinal movement that he is a bit more at risk for due to his unique spinal structure. I don’t have an exact date yet but I’ll post again when it’s time for this appointment. Thank you so much for your ongoing prayers and support. It’s a huge blessing to our family! 
Until next time, 
Dana
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