Hello Family & Friends,
First of all, thank you to all of you who prayed for our day up at OHSU/Doernbecher. Both Josiah's ultrasound and his MRI went very well. He was extremely wiggly through the ultrasound but thankfully they're used to that up there and we were able to get all the pictures they needed of his kidneys. Then we were off to check in for his MRI. Our biggest concern of the day was the sedation process for Josiah's MRI. Despite not having solid food since 6:30am (sedation was at 12:30pm and the MRI was from 1-3pm), Josiah was his usual charming, good natured self. The whole time we were in the pediatric sedation room, he was playing with the other kids, greeting people with waves and his exuberant little "Hi!"
Although he didn't like the process of getting the IV (hello, who does?) we had a great nursing staff who cared for him and the sedation went very well. We were able to be with him until he was totally asleep and then again we were allowed to be with him when he woke up. When they called us back up to his bed, he was sitting in the lap of a nurse chugging a sippy cup of apple juice. All the nursing staff were fawning over him and asking if they could keep him - yep he had them thoroughly charmed! And we were rejoicing that he had absolutely no reactions to the medications and recovered as well as could be - what a praise! We hope to have the results of his MRI in the next week and as soon as we know more we will post an update.
For those of you who are not familiar with this journey we have been on- let me catch you up. From the time that Josiah was approximately 12 weeks old, we began to notice a bump at the base of his spine. As time passed, the older he got, the more pronounced it got. After x-rays, an ultrasound and several specialists, we were ultimately referred to Shriner's Hospital for an evaluation with an orthopedic doctor whose expertise is the lumbar/sacrum area of the back. We recently learned that Josiah has a misformed vertabrae in the lumbar area of his spine which is causing his spine to compensate and protrude at the base of his back. It is also potentially putting his nerve cord at risk of being damaged/pinched - meaning it could effect the function of certain areas of his body that this part of his nerve cord controls - mainly his kidney function, lower leg movement, bladder and bowel control, etc. While he has not developmentally presented any delays or shown any signs of damage, the MRI we had today was to see 1) does he have a tethered spinal cord (meaning that the end of the spinal cord tucks under instead of out), 2) Verify the position of his nerve cord as it relates to his spine and this protruding deformed vertebrae and to see if there is any potential impact to it based on all of these issues.
If the doctor determines that either of these are an issue, we will likely be meeting with a neurosurgeon to discuss necessary interventions. If neither of these possibilities are an issue, our specialist will continue to evaluate Josiah's orthopedic issues as he develops. Our specialist thinks that once Josiah begins walking more, that the increase of impact to his spinal cord will only become more pronounced. That his "bump" will protrude more and potentially get worse causing his entire spine to compensate. He told us several times that this problem will not go away - he's not just going to "grow out of it" but that it's going to progress as he grows. He told us that about four different times during our appointment with him. However, each time he said that Dana and I both heard the Lord whispering in our hearts, "But you don't know our God - He can do things that look impossible!" We believe that God has healing for Josiah.
Today's tests are to get clear pictures of his spine to help us understand what is going on with Josiah's nerve cord and to make sure his kidney function is normal. The ultrasound was performed today to verify that his kidney function is normal. When there are spinal abnormalities in the area of the back that Josiah's is in, there is the possibility that the kidneys could be affected. There are different kinds of outcomes that could come from all these tests ranging from further observation to interventional neurosurgery to correct issues with his nerve cord and vertebrae. Obviously we will know more what the doctors are thinking once we get these test results back. And in the meantime we are continuing to pray for Josiah's healing.
We are relieved that the day is done and that everything went so well with the testing. He was a little trooper and really the day went as well as it could have gone - God worked out so many little details to make it all come together. Thank you to each of you for praying and please continue to join us in praying for Josiah and his back to be completely healed. We will post again as soon as we know more. Blessings to each of you -
Shawn (Dana too)
Hello Family & Friends,