August 2009 - Appointment Results for Josiah

Hi Everyone,
Sorry this post is so long in coming - the Fall really got away from us. So, we will get right to it! This is what we found out from Josiah's last round of appointments back in August:

Josiah had an extensive MRI of his spine and brain after which we met with our neurosurgeon at OHSU and our pediatric spinal specialist at Shriners. Upon initial review, our neurosurgeon was convinced that Josiah had a tethered spinal cord which was causing the cyst in the fluid sack around his spinal column, he wanted to discuss with our doctor at Shriners the possibility of shaving some of the bone at the base of Josiah's spine to reduce the narrowing at his lumbar sacriatic joint and the risk of it pinching his nerve cord and untether his spinal cord at the same time. Additionally he noticed a narrowing of the spinal column up around Josiah's neck which he also believed could be contributing to the cyst in his spine.

When we met with our spinal specialist at Shriners, he completely disagreed with our neurosurgeon and said he saw no evidence of the tethered cord. He absolutely said that there would be no surgery at this point to the bone at the base of Josiah's spine because of the risk it could cause to Josiah's stability and long term neurological complications from the surgery. He did confirm the narrowing of the spine at the base of Josiah's neck and believed that this, along with the narrowing of the spine at his lumbar sacriatic joint could be responsible for the cyst developing in his spinal column.

After both doctors conferring, they elected to wait another 4-5 months. They ordered another set of xrays and spinal MRI to see how Josiah's continued development is affecting his spine and nerve cord, particularly, how his walking, climbing etc... has affected the part of his spine with the deformity. This leads us to the present.

Josiah has his next round of appointments starting next week. January 11th, he has his MRI and appointment with the pediatric neurosurgeon to review the findings from the MRI. January 21st, we have Josiah's appointment at Shriners for another set of xrays, and appointment with the spinal specialist to review the MRI, xrays and give some input as to what he thinks next steps are regarding Josiah's spine.

We have a lot of questions as we head into these appointments with the doctors and are hoping there is nothing critical that is happening in Josiah's body at this time that would require intervention. His body developmentally is in such a tender stage any intervention at this point is a huge concern because his bones are still soft and there would be significant risk. We would greatly appreciate your prayers as these appointments are all day long ordeals and very exhausting physically and emotionally. We also ask that you continue to stand with us in prayer for a miracle for Josiah's back as that is the most ideal option.

We will post an update at the end of January as soon as we have more information. Thanks for your love and support!
Shawn, Dana, Dara & Josiah