Its what he didn't say. . .

First I will have to say this past week was tough with so many people grieving close loved ones.  While I am grateful that they are now in the arms of our heavenly Father, it also makes a person evaluate their own lives and how they are projecting God's light to all of those around them.  With a heavy heart, we escaped to a cabin in the foothills of South Carolina.  It was a fabulous time for all of us and a great escape to get away from everything technology.  The boys were amazed there was no television. It was great!!  Nothing brings you closer to God then being in an untouched State Park listening to my boys giggle and play.  It was good and bad for Thomas from the view of Robert and I.  It was good for him in a PT sense as there was lots of obstacles for him to step over and walk around with roots, rocks and tons of leaves making it difficult to see where to walk.  It was a natural way of having him work on balance.  The downside was a lot of falling.  It hurts us to see him fall so much when just trying to walk around and be with us and with his brothers.  I will have to say again, he is a trooper and doesn't cry much, instead he gets up brushes himself off and keeps going. 

It was a short trip though, leaving Friday afternoon and coming back Sunday.  As soon as we got back I began getting anxious about today's doctors appointment.  Today was the Orthopedic doctor who had requested us to come in to discuss the new discovery of the fused vertebrae in his neck (cervical).  We waited long enough that I felt sick to my stomach before going in, luckily my little man was sitting next to me holding my hand while watching the people come and go from the waiting room.  We then went into the exam room where Thomas ran into the doctor's arms while the doctor nonchalantly rubbed his hand up and down his back checking his spine.  No changes in his spine since August, good.  After he reviewed the the x-ray again, he came in and began to draw for me what we have discovered.  He basically explained that Thomas' C1 is tilted on C2, which is causing the head tilt.  He then explained his concern that C3 and C4 are pulled away but that the spinal cord seems fine.  The fusion of the vertebra begin at C4 and go down through about C6. 

Here is a picture that I found that shows the way C1 sits on top of C2.  Its clear to see that if C1 is tilted how that would cause Thomas' head to have the tilt that he has. He explained C1 being like a halo that is off centered and tilting to one side.

Here is a good x-ray of the cervical vertebrae from C1-C-7.  As the doctor explained, he is not concerned about the fused vertebrae as they are what they are.  He will just have a short neck or low hairline due to the fusion and will not be advised to play such things as football or baseball.  Not sure he understands that those things are not an option anyway for his patient, but I kept pressing.  He was illusive as to what he wanted to tell me until he can see the MRI to get a better picture of what is actually going on.   He assured me that the spinal cord looked fine and that there was plenty of room for the nerves to grow.  He called it a "stable abnormality"

In our conversation, I asked him if this meant that his limited range of motion was definite or something that could be altered.  He basically said that his range of motion would not be increased.  My heart sunk at his words knowing that Thomas' eyes need him to be able to compensate with his neck and not having that range of motion limits him even more.  Also in the back of my mind is the fact that many people who have eye problems such as Duane Syndrome suffer from neck and back pains and issues even with full range of motion.  At this point, the sadness set in on me and I could feel my body melting to his words.  It amazes me how much I do like this doctor and he is so intelligent, yet when I leave I spend hours processing what he told me and end up doing further research to figure out what he didn't tell me.  I do believe some doctors don't divulge everything in an effort to protect.  I am not sure if that is his intention but it is certainly the feeling that I receive from him.  In a nutshell, he wants to see the MRI before making any conclusive remarks.  The MRI on Thomas' spine is scheduled for December 28th at 8am.

He did mention that after the MRI he would clear Thomas for his surgery.  He really didn't feel comfortable doing so until he was able to get a clear image of the bone structure to advise the proper way for the intubation.  He explained there are options to use a fiber optic method as opposed to extending the neck and tubing.    

My concern is that this is what it is and we must accept it.  If that is the case, Thomas will always have the head tilt which prevent good posture causing multiple issues throughout his body.  It could also cause the other vertebrae in his back to move to compensate causing scoliosis which he is already prone too having the butterfly vertebrae in his thoracic part of his back. Not to mention the anomalies in his lumbar that could also shift.  Know that if this doctor doesn't offer a conclusive explanation of what can or cannot be done, I will seek an alternate opinion.  I will not be satisfied until I know for a fact that I have given Thomas the best opportunity to overcome these issues and prevent any of them from becoming worse or causing more pain in the future.  I feel it is easier to fix what we can now while he is little before they become a bigger issue through growing and compensation.  The body will find a way to compensate and sometimes those things are not reversible.


So today, I feel like someone kicked me in the stomach.  Again my thoughts have had to shift, I thought the issue was fused vertebrae when in fact its more to it than that.  I am not sure what the MRI could possibly change, but am willing to wait until he has seen what he wants to do to provide me with a definitive answer.  I don't really have any other choice.  Tonight I will process, read and try and file this information where it belongs so that I can focus back on my family. So I can get back to preparing for a great Thanksgiving meal and teaching our boys to count all of our blessings.  But for tonight, I will lay down at the feet of my Lord and give all of my fears and frustrations to him and pray for the strength and renewed spirit for tomorrow.

Next Tuesday is our appointment with the Genetics Specialists.  Again, I am not sure what they will be able to offer me, but I was once looking forward to it with hopes and now I think anxious is more of the feeling.  Hopefully, this will change in the next week.  Thank you again for reading, listening and praying, you mean so much to me.

"Don't worry about tomorrow  ~  God is already there"