Update on the Spine ~ 9-10-12

Today was our follow up with Thomas' Pediatric Orthopedic Surgeon.  First, if he wasn't the best I would replace him. He is highly qualified and is recommended even from my contacts at Boston Children's Hospital.  It may be that I am not knowledgeable enough but he is a very in the box type of doctor to me and only focuses on Thomas' spine.  He barely seems interested in the Klippel Feil.  Today he did test his neck motion and range but no additional x-rays were done on the area.  I am thankful that I have pursued a NueroSurgeon for Thomas who does focus primarily on his neck and the fused bone are. 

We did have x-rays of Thomas' spine today from the bottom of his neck down.  The newest development is Kyphosis in his lower back on the right side.  Thomas' physical therapist was the first to notice a small knot of muscle forming due to the curvature in his back.  It has gotten larger and quite noticeable.  Thomas' occupational therapist also noticed that Thomas has a difficult time sitting on the floor without support.  In essence most kids have incredible posture, yet Thomas seems to have to hunch over.  This is all coming together now as the kyphosis.  

Our Orthopedic Surgeon seemed pleased with Thomas' spine in that it is stable.  While again his spine is made up of complex triangular shapes in the lumbar and thoaric, his scolliosis has not worsened and the angel is still under the need for intervention.  Thomas' spine has the complex triangular shapes and as long as they continue to balance each other out and protect the spinal cord we are stable.

My husband and I had a long discussion tonight about where we are what we need to do at this time with Thomas.  The end of the year is coming and we are almost done with all of our follow ups for this round.  We both agreed that we need to work with the PT on the kyphosis and see what our options are on improving his posture and core strength the best we can despite what his bones are doing from the inside.  We are also going to follow up with the NueroSurgeon for a MRI on his complete spine including cervical.  We both agree that Thomas has a high tolerance for pain and probably has been in some level of pain since birth.  We want to control that pain the best we can so that it does not go beyond his comfortable threshold.  I feel like the best way to do this is the continue with therapy in such a way that his muscles are strong and help compensate as well as orthopedics in his shoes to aid in support and posture. 

We also discussed our medical finances in retrospect and predicting the future.  We have decided that approved or declined Katie Beckett is worth a shot.  I have recently learned that if you are indeed denied for Katie Beckett that their are additional options through the Easter Seals.  I never knew!!  Its so difficult to find and get information about programs and options.  But I am glad that I am getting the information.  We would not be where we are today if had not been for our family and friends providing financial support to us over the last 9 months.  We are still so humbled and so grateful for every dollar you have invested for our son.

We still have our ENT appointment coming up the end of this month. But we are not concerned with his ears or hearing at this time.  This last set of tubes are hanging in their better than his first set and he is hearing great!!  Such a relief after months and months of him not being able to hear.

We have his feeding evaluation the beginning of October, which should be interesting.  We are also going to pursue Thomas being seen by an Endocrinologists.  We definitely have enough evidence to need a specialists to perform some additional testing in regards to his bone age and size.  While we enjoy him being little, its not just the size that is reason for concern but development regulated by his pituitary gland. 

*sighs*  I feel good having a plan in place for my son and knowing that we do have a good team of therapist and doctors willing to do what needs to be done.  I would by lying if I didn't admit that I still get angry that this is even remotely the way our lives are and that this is our reality.  When we don't have as many appointments and we are living daily its easy to not focus on the potential issues and the things that are at stake.  But when intense appointments like the one today come up, its hard not to feel myself slipping and loosing grips of the hope.  Luckily, I have learned to not let it keep me down.  We have a plan and we will always move forward.  God has got my baby boy in his hands and he is standing beside me the whole time.  Together, we will always be surrounding Thomas with light and love for his life!

 The Spirit of God has made me; the breath of the Almighty gives me life. Job 33:4
God brought this little man in to our lives with a purpose.  I feel driven more than every in my life for Thomas and my entire family.  I hope that Thomas' life touches you in some way.  I hope that you feel God's love and presence over and around you as you read his story.  It matters not where you are in your life or your spiritual walk, you are loved tremendously just like you are just where you are.  

If the past is too heartbreaking and the future is to scary and full of unknowns, live in
the present and be surrounded by those who love you most.