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

Morning Update

We met with Dr. G this morning and he reviewed all of the results from the day before.  He arranged an appointment with Dr. Ahn, our nuerosurgeon, tomorrow morning at 8:30.  He wants us to see if something may still be tied into the tethered cord.

Dr G also mentioned that sometimes these kids lose mobility and remain wheelchair bound.  He said we really need to treat the spina bifida separately from some of the other aspects.  He did, however, prescribe ditropan to try and help with some of the urinary issues we've been having.

Jacob feels stronly that it is the titanium bar and screws that are in his pelvis.  His Mommy and I sometimes forget that Jacob, now almost 10, can and should provide insight on what is going on when his body is hurting.   Dr. Sponseller will review the x rays when he returns next week.

So we are still not sure why Jacob can't walk and will determine what's next based on what Dr. Ahn tells us tomorrow.   We will also check for the results from the urine culture to see if anything there.

Thank you for your diligent prayers. 

There is Power in the Blood.

Mommy and Daddy

 

Still searching...

After many tests today, the doctors are still unsure as to why Jacob cannot walk.  Jacob has been released from the hospital for now and we are staying with a wonderful friend/former nurse of Jacob's.  We meet with Dr G tomorrow morning and hope to find out what to do next.  This is certainly frustrating, but we pray that the Lord will be glorified.

Leaning on the Everlasting Arms.

Mommy and Daddy

At Johns Hopkins - update

Jacob, Mommy and Daddy arrived safely at Hopkins last night and checked into the ER.  As of early this morning, all threedisciplines - urology, nuerology and orthopedic have seen Jacob.  None can find a conclusive link to the leg pain he has been having.  Neuro has ordered an abdominal MRI that will take place later today.  Otherwise, Jacob's pain remains a mystery.

Please continue to pray for answers and resultion to Jacob's  pain.  Also, all of our usual lodging places are full, so we'd ask that everyone pray for an opening.

While Jacob's leg pain remains a mystery to the doctors, we are thankful to serve a God who knows all things - nothing is hidden or surprising to Him.  We pray that He might reveal these things to us according to His good and perfect will.


Mommy and Daddy

Heading Back to Baltimore

Following the June surgery to remove a few bladder stones, Jacob had two really good months.  Other than some leakage from his continence stoma, he finished out his summer vacation and started back to school in early August. 


Then, at the end of August, we attended a family pool party where Jacob fell and seemed to hurt his leg.  During a routine check-up with his Pediatrician, earlier in the month, he had again tested positive for a urinary tract infection.  We checked with our local Urologist (the one who knew us from his time at Johns Hopkins) and he advised us to hold off on antibiotics unless Jacob was showing symptoms.  Since he was not showing symptoms, we held off, but when he started to lose mobility, we started it up again.  Towards the end of that week, Jacob was again feeling better so we attended another family birthday party where Jacob seemed to do very well. 


However, upon returning from the party (on Labor Day), he was again complaining about leg pain.  We continued with the antibiotic for the urinary tract infection, but after about seven days, he was not showing any improvement in his mobility.  We scheduled an appointment with the Urologist, who discovered a different infection in his bladder.  We started another antibiotic, meant to specifically target this UTI, praying diligently that this one would resolve his mobility issues.  As you may recall, he has had this cycle going on for about a year now.  After another week, his leg pain has not improved.  We had x-rays and a blood test this past week, but everything looks OK from those.  After consulting with our doctors here and calling Dr. G at Hopkins (and lots of prayers - thanks to the many who have prayed for us), we have decided to head back to Baltimore. 


The plan is to leave tomorrow morning (9/20) and take Jacob to the Emergency Room.  The reason for this is so that he can receive attention immediately and get admitted if necessary, rather than trying to schedule appointments (on Dr. G's advice).  As we prepare to leave, here are our primary prayer requests:


1.  For safety in travel tomorrow  - especially as their are reported gas shortages in various places from here in TN on up into VA. 
2.  That we will be able to quickly find some answers as to Jacob's mobility issues.  We pray that he will not need extensive surgery, although we know the Lord will be with us even if that is the case.
3.  That in the event that surgery is needed, Jacob's mobility will be restored.
4.  For the Lord's provision financially in terms of travel, lodging and meal expenses.  We hope to get into The Children's House for the duration of our stay, so we'd ask for prayers that a spot will be available for us.
5.  For James as he will be staying behind with Gran and Papa.  Please pray for them, too, as they take him back and forth to school, help with homework and prepare him for his two day SOAR adventure  (overnight camping trip) with his school. 
6.  For Mommy and Daddy, that we will rely totally on HIM to guide and provide for us.  This trip is a little different from some of others in that we really don't know how long we will be at Hopkins or what all Jacob will need to have done while there.
7.  Lastly, that we will be a witness to others who may not know Jesus as Savior, Lord and King.  He always puts these opportunities before us, whenever we are there, whether it be in the hospital or at The Children's House.


Thank you for your prayers and may God be glorified.


Mommy and Daddy