Approaching the Cliff (New Info on Isaac)

Dear Family, Friends, and Followers,

As many people have been inquiring, Kristi and I felt it was important to post the most up-to-date information we have regarding Isaac's condition and the status of his medical needs.  As many are aware, Isaac has approached the need for surgery many times, and each time we have been told that it isn't necessary at that time.  However, this has changed with the last appointment with Dr. S.  He, along with Dr. I (neurosurgeon) are recommending surgery for Isaac this winter.  They have consulted for quite some time and have to this conclusion for 3 main reasons.

1)  Isaac's spine is not compressed according to all images taken, but is at risk for becoming compressed here in the near future.  It is important to prevent that from happening in order to keep whatever feeling and mobility he may have in his hips, legs, and feet intact.
2)  The spinal cord needs to be untethered from his tail bone
3)  While not emergent, doing this surgery may allow him a better chance at growing (length and weight)

The surgery they are recommending is following:

They will alleviate the probability for his spinal cord to become decompressed by chipping away the spinal column (the bone) to allow the spinal  cord to float back to a more straight line or fluid position, rather than have to navigate through the curve it currently has.  Due to the procedure for decompression, it makes the spinal column grossly unstable, thus necessitating a stabilization surgery for his spinal column through fusing bones, with the possibility of rods as well.  Lastly, they will untether is spinal cord from his tailbone.  Obviously there are many details to this surgery we have not gone over with the doctors.  Needless to say, it will be a lengthy and complicated surgery (though the untethering procedure is quite common - although there could be some complications here for Isaac, as he has some bone spurs on his tail bone that it could re-adhere to).  We will cross that bridge as a surgery date approaches.  In meantime, we have asked for a second opinion on this plan and Dr. S said the following to our request "I think that is a great idea, but I have only one requirement, that whomever I send you to has to be smarter than me".  That made us smile, Dr. S has been pretty unbelievable and we continue to be thankful for all the time and thought he has put into Isaac's case.

After a lengthy discussion with Dr. S, it was determined that instead of sending us directly for another consult with just one other doctor, since Isaac's spinal issues are so rare, he would create a presentation with all of Isaac's MRI's, CT's, and XRays, as well as a write up of his findings. He offered to then send it off to a study group of Dr's that he communicates with regularly from his time at Harvard. This is a huge blessing! We are going to essentially get 11 more sets of eyes to 'look' at Isaac. We think this should get sent out this week.

So, where do we go from here, while we're waiting on all of the other reviews?  Well, the first stop was to see another neurologist, oddly ANOTHER Dr. S.  We have now seen Dr. S from orthopedics (for his club foot), Dr. S from orthopedics (for his spine), used to see Dr. S as a pediatrician, and now are at another Dr. S from neurology!

Anyway, we went to see Dr. S (the new one) in regards to Isaac's motor function and his ability to use his legs.  We learned that Isaac has more strength in his legs than previously thought, that he can detect hot and cold on his legs (he got 8/10 questions right in regards to hot and cold), and he can command his legs to do things when asked.  Now, does he have much feeling in those legs?  No.  Have his muscles developed much in his legs?  No.  Does he have the ability to stand unassisted?  No.  Is that possible in the future?  N......Maybe?  :)  It seems as though Dr. S believes that Isaac might stand/walk with bracing unassisted.  Where does this put us?  We have no idea.  However, Dr. S is hesitant to recommend surgery as there are certainly risks for Isaac losing whatever gains he has made.  But again, Dr. S also said obviously there are benefits to the surgery as well.

Unfortunately, we are faced with a risk versus reward situation in regards to surgery.  It is very difficult to say whether or not surgery will help or prevent further problems.  SOOOOOOO, we're waiting patiently for Isaac's presentation to be reviewed by the other doctors, we know options are going to come back from them, essentially there are three options we could be given: 1)  Agree with Dr. S and Dr. I and recommend the surgery, 2) Disagree and say surgery is not needed, or 3) Say they need to physically see Isaac to make those determinations, in which case we will take him to Boston.

Whew!  That is where we are at.  Tentatively thinking of a winter surgery while we wait for all these docs to consult and come to some conclusion on what to do.

I am sure this post is longwinded and confusing.  It is tough to type as my mind races ahead to another thought or what-if scenario.  Feel free to ask Kristi or me if I didn't do a very good job explaining what is going on.  Thank you to everyone for all the kind words of encouragement and all the prayers that are said for Isaac and our family.  We sincerely appreciate each and every one of them.  We often find ourselves totally forgetting that Isaac has some serious hurdles ahead of him, and forgetting about that is really quite good for us.  We will continue to advocate on his behalf and we hope he continues to show the amazing resilence he has already shown. God has been faithful to us so far, and we strongly believe he will be in the future!

To Twinfinity and Beyond!!!!!!!!!

Love