Hope changes but Faith remains the same . . . Neurosurgeon Appointment

Faith and hope are two completely different feelings.  Hope is wanting something that may or may not happen.  Faith is believing it will happen.  Today, we went to the neurosurgeon with hope that he would have something to give us.  A treatment, prevention, or dare I say a 'cure'.  I was raised to have a back bone, to never stop until I get what I want.  If you are strong and persistent, eventually you will be rewarded.  Somebody gets sick, you research, find the doctors, the treatments, the clinical trials,. . . . answers.  Its the 21st Century its America there has to be something, somebody, somewhere.  So, today I had hope. 

The thing about hope is it can change.  What I had hope for this morning is now different.  Today I learned a little more about my Thomas and his situation.  Its not all negative necessarily, but its not what I had 'hoped' for.  Thomas has unusual bones that cannot be corrected.  He has a lot more unusual bones than the average person with this condition.  His fusion is extensive and he has unusual bones in all three areas of his spine.  However, on the good side his overall curvature and plains in his spine look better than the average person.  So, in essence he is really high on one spectrum stating the amount of unusual bones and really low on the spectrum of people with scoliosis, kyphosis, or spina bifida.  There is no need for surgery at this time.


Will surgery be necessary in the future?  Maybe.  What's his 'my Thomas'' prognosis?  You cannot fix what wasn't created correctly.  He may be fine for a long time or he may have pain within the next couple of years.  Ultimately his bones will degenerate and cause him possible pain, tingling, numbness. . . etc.  At that point, pain management will be the ultimate goal.  Is he at a higher risk. .. . it cannot be determined.  In these cases it is individually based as no one has the same bone structure as Thomas and predictions simply cannot be made. The doctor explained how one person with many unusual bones can be fine for years and another person with half of an unusual bone could suffer endlessly from the beginning.  My hope got tethered a bit here.


Can we prevent the early degeneration from KFS? No.  The bones are fused together.  In most instances this is done by humans with bolts and rods, but in this case his bones were made this way in utero. When bones are fused together there are no ligaments in the middle to provide cushion when bones are being used.  Therefore, its the bones above and below the fusion that take on the added stress and this causes them to breakdown quicker than the average spine would.  This was new information to me.  In my mind, the degeneration was just a side effect and we could build up his calcium in order to prevent this from happening.  My hope was crushed on this point.


Can we do anything for him now? The doctor thoroughly believes in physical therapy for his neck to build up those muscles around the fusion.  He wrote a prescription which I will take back to our PT in hopes that she will have the ability to do what we need.  I agree that therapy wouldn't hurt and could definitely benefit him.  I am not one to sit idle and wait.  I was able to keep some hope on this point.


Thinking back. . . all I wanted to know was what was wrong with my baby so we could face it head on.  I wanted to the answers so that we could move forward and work with them and make him better before he realized there was anything wrong.  My oldest had ear infections as most infants do and he had tubes put in his ears at 18 months.  It fixed the problem and he hasn't had an issues since.  Now we can tell him about it and he doesn't recall a thing.  But it helped him from being in pain, it prevented any speech delays, etc.  Problem found, problem fixed and he knows nothing different.  I now know what is wrong with Thomas.  I have since learned that its not something to be fixed but something we are going to learn to live with.  He will constantly be monitored by doctors and specialists because at any moment things will not get better, but could possibly get worse at any time.  Today I learned he could have issues or start back sliding in his development.  But the clinic was very sweet and seemed to be there for us when we need them.  We go back in six months for a check up and an array of x-rays of his neck in different positions to create a baseline of his neck structure.


Tonight, I am going through this information over and over explaining it to myself.  Tonight my hope is that the pain will stay at bay for as long as possible.  My hope is that Thomas will be happy and live his life openly, completely despite the pain and challenges that he has.  My hope is that I will be able to push through disappointment that my child will have to suffer due to his condition and be able to be a shining light in his life.  My hope is that I will be the mom that he needs to enjoy his life.



No mother can honestly say that its okay for my child to suffer through pain throughout their life, so instead I will need to allow myself to feel what I am feeling and then help Thomas to always be accepting and loving of his own life despite his own pain.  Tomorrow will be another day and maybe tomorrow I will begin focusing on my new hope.

My Faith is in my Lord, that he created me and created Thomas and knows things I will never know until his plan is complete.  My Faith tells me that my Father God loves me unconditionally and has given me the gift of Grace completely.  Grace is not earned, but simply received.  He will hold me in his arms and not let me fall no matter how complicated things get or how much I do or do not understand.  My Lord will walk with me daily, minute by minute until I am filled completely with peace and comfort.  Through all of this I felt as though I was changing, but in reality I am finally becoming the person God has always wanted me to be.  Tonight I fall on my knees, praying for these and many others who are weighing heavy on my heart tonight.  

Thomas 'cheesing' in his coffee canister.

Phil 4:6-7   “Don't fret or worry. Instead of worrying, pray. Let petitions and praises shape your worries into prayers, letting God know your concerns. Before you know it, a sense of God's wholeness, everything coming together for good, will come and settle you down. It's wonderful what happens when Christ displaces worry at the center of your life.”