Update from this morning - the Lord has given us a plan

Dr. Ahn reviewed the MRI's from 2007 and compared them with the one from this year.  He thinks he's found the issue causing Jacob not to walk.  Jacob's spinal cord is tethered, which we have known about since shortly after birth.  Under normal circumstances, the spinal cord would be protected by the spinal column.  In Jacob's case, however, the spinal cord extends down further than normal due to a lack of bone in that part of his back.  There are fatty tissues, called lymphomas, that end up restricting his spinal cord from moving freely, causing it to be restricted or "tethered".  This fatty tissue (or even just scar tissue in that area) will sometimes attach to the other normal fatty tissue in his bum, restricting his spinal cord from moving as he moves.  This restriction can play out in his mobility, especially in his lower legs and feet (but sometimes extending beyond that). 


In September of 2007, Dr. Jallo (Jacob's neurosurgeon at the time) removed the fatty tissue surrounding his cord, allowing it to become mostly unrestricted (remembering that it will always show some tethering in MRIs).  He also created a gap/separation between the two types of fatty tissue to help prevent scar tissue from bridging the two and again restricting his cord.  Over time, however, with growth and perhaps even from traumatic events (falls, jumping, or just being a boy), the spinal cord can again become restricted.  We think that part of the reason we missed this with earlier MRI's is because they were being compared with more recent images (2013 and 2016) instead of comparing the current ones with what it looked like originally in 2007.


In comparing the two MRI's from these years, the doctor thinks that the cord may again be restricted, but not necessarily to the degree it was in 2007 (at least not yet).  But because the spinal cord is the control center for the nervous system, even a slight restriction can cause mobility issues, like the ones Jacob is experiencing now. In 2007, Jacob was not even a year old, so it would have been much more difficult to notice significant changes in mobility.   Also - Jacob's pain has been primarily in his lower leg and toes, which the doctor thinks is another tell-tale sign of the cord being restricted. 


Dr. Ahn feels like Jacob will need surgery to correct this issue. This involves removing some of the fatty tissue surrounding the cord and using a Gore Tex type material to help recreate the gap between the fatty tissues and help limit restriction.  This will not guarantee that their won't be future issues, but should help keep the two types of tissue separate and allow the cord to move more freely, especially as Jacob grows. 


This was a very difficult surgery for Jacob and us, back in 2007, especially post-operation, but we are very thankful to have some answers.  The plan at this time is to wait about three to four weeks for the inflammation/trauma in his nerves to subside and then schedule surgery at that time.  In the meantime, we plan to head back to Chattanooga tomorrow.  Jacob will need to really take it easy over the next few weeks to allow for healing and preparation for surgery. 


Thank you for your diligent and faithful prayers throughout. While it seemed like quite an ordeal to find some answers to Jacob's mobility issues, we know that God's plan is always best - even when it doesn't match our's or isn't something we "like".  While here in Baltimore, we've been able to reconnect with another exstrophy patient who was with Jacob way back in 2008.  We also met a local family this morning while in the waiting area.  We are reminded that our Lord is always at work, even using difficult circumstances like this one, to spread His gospel and to bring glory to his name.  What more can we ask than that?


We continue to covet your prayers as we travel back home and do our best to keep Jacob's activity level to a minimum while also trying to ease him back into school again. 


In Christ alone, through the faith He provides. 


Mommy and Daddy