The Adventures Begin

I should have started this blog a long time ago.  It has been on my to-do list forever.  Now we are getting ready to embark on one of the biggest adventures of our lives and I figured this would be a great time to start and so I can keep everyone that is truly interested updated.

I guess I should start with a little back story.  As those of you who know us know Rachel was a micro-preemie.  At the time of her birth she weighed only 1lb 11.5 oz.  Some time shortly after her birth she suffered a severe brain bleed.  The doctors at the time were not real optimistic about her prognosis.  We heard things like severe mental retardation and severe cerebral palsy, never sit up, never talk,  never eat on her own.  Well... We all know none of that is true about our little fighter!  She is very smart, never stops talking, is in a regular 1st grade class and walks with a walker.  Oh,  and VERY strong willed!!!!  Yes,  She does have mild cerebral palsy,  but it is no where near the severity the doctors said it would be.  

And this leads me to why I am starting this family blog now.  We have worked for years to help Rachel walk on her own.  She has made tremendous strides in this endeavor.  We are always looking for ways to improve her mobility.  Our physical therapist had mentioned a few years ago about a surgery that would reduce the spasticity in Rachel's muscles.  Spasticity is the term used for muscles that are tight.  Her muscles stay contracted in her legs and her left hand.  You would think as soon as I heard about the surgery I would have jumped all over it, right?  And maybe I should have.  But when she explained that they would be cutting part of the roots of Rachel's spinal cord my brain shut off and I said no. I could not imagine anyone touching my child's spine.  And at the same time we had an orthopedist telling is she needed to have her adductor muscles ( inner thigh muscles) lengthened ASAP so she didn't cross her legs when she stood and pull her hips out of socket. Way too much to take in at once.  So we opted to go with the adductor surgery, and I put the nerve surgery in a little box and filed it away in the back of my mind.

Fast forward to this summer.  My dad stops by our house to see the kids for a bit and mentions a coaching friend of his has a daughter with CP who had this surgery in St Louis to help reduce her spasticity and it was LIFE CHANGING for her and her family.  My light bulb went on and all the thoughts of the nerve surgery came flooding back in.  No way this was the same surgery we had learned about.  He told me to call his friend's wife and talk to her.  In fact, he dialed the number and handed me the phone.  I talked to this mom for a long time and sure enough it was the same doctor and the same surgery we were recommended for.  I listened with tears in my eyes as she told me how tight her daughter was pre- surgery and how much her life has changed post-op.  She told me that this surgery was the difference between her daughter being dependent and independent.  That statement went straight to my heart!  This is my ultimate goal for Rachel,  her being as independent as possible.  

And so it starts...  I researched and researched this surgery.  The procedure is called a selective dorsal rhizotomy.  And in simple terms they will tweeze out the roots at the base of the spinal cord, check each one to determine which ones are over firing and they will clip only the nerves that are causing the spasticity.  Why go all the way to St Louis?  Well,  besides the fact this procedure is not performed in South Carolina, Dr. Parks is the BEST!!  And we want the best for this type of surgery!!!  Post-op Rachel will start a strict schedule of physical therapy to build up her muscle strength.  This will be a long road for her and our family.  She will need all the love and support she can get.  So that is where I am hoping this blog will come in handy.  I hope to be able to keep our supporters updated and keep Rachel's spirits uplifted with comments left here and on FB.  

She is scheduled to have the surgery next Tuesday, November 19th.  We will fly out to St Louis on Sunday the 17th and return home Sunday the 24th.  Please keep her in your thoughts and prayers!  We will need all of them!!

Thank you for sticking with this long first post!

Love~Jennifer

*If you would like to learn more about SDR you can visit the St. Louis Children's Hospital Website:
SDR: St Louis Children's Hospital