~ Shriner Hospital ~

We drove up last night and stayed in a hotel room.  Thomas wasn't horrible but he did seem to wake up every hour to make sure I was there.  So, ever hour I hear "Ma!" and then we would both go back to sleep.  We were exhausted today.

Our appointment was for 8am.  We got there and registered and went to our room.  Answered all the medical background information and discussed the current diagnosis.  We then went off to diagnostics to have x-rays done.  They only did two full spine and two neck, which was fine with me.  They also did a good job of helping us take them standing up instead of laying him down on the table.  He always hates being put on that big x-ray table and us having to hold him down in place.  He still freaked out and it took three of us to get him and hold him in place but he did well considering.

Afterwards, we went back to our room and waited.  After quite a while the PA came in and checked Thomas' feet and watched him walk and checked his neck's range of motion and we talked about his current PT plan.  Since she was pleasantly surprised at how well he looked considering his x-rays.  She then left and then brought Dr. Pete in with her who pulled up the x-rays and he went through the lumbar and thoracic vertebrae in detail.  It was quite interesting because while these have explained to me before, it has never been in such detail and with the pictures to show me.  He first explained the difference between infantile scoliosis and congential scoliosis.  Infantile is when a child's bones formed correctly and then moved into a scoliosis position.  Congenitial scoliosis is when the bones formed in an unusual pattern.  He explained the way the bones formed and how one triangle was made and so God made another nod to almost straighten it back up.  Thomas has a series of bones that look like this:


In looking at his bones, he has a hemivertebra stacked on top of a wedge vertebrae in his lumbar.  So while the bones are quite wacky, they end up stacked great to offer him a good strong spine.  Then as you continue up to the thoracic area there is a vertebrae that is just all wacky looking with some butterfly vertebrae which more like this:

Again the spine seems to look good above and beyond this particular area and the bones seem stable.  Currently his curvature is at 27 degrees and here is how that is determined.



So, we got a great educational lesson on the congenital scoliosis.  He lightly mentioned and passed by the Klippel Feil as if it was nothing to discuss that the bones are fused.  There is no reason to brace or do any type of surgery at this time.  If it were infantile scoliosis he would already be in braces and such, which is why he explained the difference.  He told us that we were doing everything that we could and honestly there was no way to predict if or when he will ever need more.  We were released and advised to continue our current plan with our current doctors.

 Where does that leave me?  Good question.  While I enjoyed, okay maybe enjoy isn't the word, learning more about my son's bones and having a deeper understanding, I was let down when I left.  I had to process and figure out why.  I was trying to figure out what my expectations were and why I was feeling that way.  Did I want a miracle? Yes! Did I want more answers or to hear that maybe someone was wrong? Maybe.  Did I really want confirmation of what he has and there is nothing else to be done? No.  Maybe I should have been more realistic in my expectations.  I have been a bit down lately anyway and just letting it all swallow me up so I was hoping this would turn it all around for me.  It didn't happen this time.  So, I am left with this thought.
                

Proverbs 3:5-6 (NIV)

 ⁵ Trust in the LORD with all your heart
   and lean not on your own understanding;
⁶ in all your ways submit to him,

   and he will make your paths straight.

Trust is huge for me!  I realize that in my life a lot of people have given me a LOT of reasons not to trust them.  Sure, I will be nice and try to be the best person that I can in this world, but I have these nice walls up around me that I like to hide behind.  Thomas' situation has forced me to bring the walls down and lean on others for strength and support.  It has forced me to ask for financial help to continue our treatment plan for Thomas under our current circumstances.  My mind reals with alternatives but it comes back to letting others in.  God is teaching me this very valuable lesson.  Because of Thomas and my love for him, I am doing things that I never thought I would do, saying things I never thought I would say and believing things I never thought I would believe.  Now you can take that same statement and replace Thomas' name with God.  Powerful!

Stop worrying about and trying to control everything. Nothing that happens in your life ever takes God by surprise. He knows the end before the beginning, and He has a perfect will and purpose for your life. Trust Him....He's got you!  Let's work on this one together, because its hard.  Especially for us stubborn ones!

My mind is full right now and I am praying for God to just take from me because I really am having a hard time just letting go.  After PT tomorrow and running a few errands, I am hoping Thomas and I can enjoy some form of a Spring Break.  Our life is different and I am trying to be okay with that.

Thank you for all of your prayers and support for our trip to the Shriner Hospital.  It is a wonderful organization and amazing people dedicated to helping children!!!  Don't be turned off by them just because there was nothing to be done for our Thomas at this time.