Friday, July 29, 2011

Day 3 Post Surgery

There wasn't much to report days 1 and 2 after Grace's SDR.  Just lots of sleep and pain management with a little bit of whininess because she couldn't get out of bed and had to lie completely flat.  Pretty much what we were told to expect.  One thing, however I did not expect was the sense of peace that I had about what my daughter had just gone through.  Although peaceful, I did feel a bit uncomfortable about this calmness seeing that I have spent the past few months sleepless, overly fretting causing serious chest pains and in a continual search for validation that a trip to St. Louis would be life changing for my a good way.  There were lots of conversations with God and second guessing when Grace's health would fluctuate or she just didn't seem herself.  But as we loaded the van for our journey, I begin to find....well, the only way to describe it...peace.  Pour out your heart like water before the face of the Lord.  Lift your hands toward Him for the life of your young children.  Lamentations 2:19

Now there is no way of knowing whether this has been the best decision of Grace's life on day 3 of post surgery, but I do know as the physical therapist moved Grace's feet and legs in ways that were never possible before, I was near tears and crying out in thanksgiving to our God, who has the ultimate control (how I somehow manage to forget this sometimes if beyond me).  There is so much work ahead of her (and us) but I truly now feel where we had once felt stalled in her progress, we have given Grace a chance to move forward.  A bit stressed about what is involved once we get home but SO excited for the possibilities.  I can do all things through Christ who strengthens me.  Philippians 4:13

ps...wanted to post some cute pics of Grace up and about but can't figure out how to get them from the camera on my iphone to my email to blogger.  sigh

Wednesday, July 27, 2011

And From St Louis

I've been absent for quite a while.  Many times thinking I need to get back to blogging but often too exhausted after the kids get to bed to form coherent thoughts.  There has, obviously, been a lot going on and I will update you on some of the "other stuff" later, but right now I want to tell you about St Louis.

For the past three years the words "selective dorsal rhizotomy" or "SDR" has been in the back of my mind, resurfacing occasionally.  Three years ago we had decided that SDR was not where we wanted to go at that time but knew it would be something to reconsider later.  Well, it's later and we are in St Louis.  Why St Louis?  After doing much research and holding many conversations with doctors and other parents and fervent prayer, we decided that we wanted to put our daughter in the very capable hands of Dr. Park at St. Louis Children's Hospital.  Although SDR is performed in other hospital (including one in Dallas), we wanted an expert...the doctor who has performed over 2,000 of these "permanent" spinal procedures. 

What is SDR?  Because any explanation I could provide would be extremely simplistic, I will direct you to very thorough and detailed information provided by St. Louis Children's Hospital -  About Selective Dorsal Rhizotomy.  In VERY simple terms this procedure involves cutting the spastic nerves thereby eliminating the spasticity that limits much of Grace's movement.  This procedure involves exposing these nerves at the spinal cord and permanently removing any connection.  Pretty scary, if you ask me. will this help Grace?  Our hope is that by removing the spasticity, Grace will eventually be able to walk independently, as well as eliminate any further orthopedic type surgeries that are often required because the spasticity can cause bones, etc to form incorrectly.  (again see the hospital's explanation before I start sounding really stupid)

The surgery was performed yesterday (Tuesday) and she is currently in the PICU recovering on strong pain medication and valium (for muscle spasms) and we will be moved to a regular room today.  She will get out of bed briefly tomorrow and then will have physical therapy on Friday and Saturday before she is released on Sunday.  THEN THE REAL WORK BEGINS!!!  The surgery is not a quick fix.  It must be followed by strenuous physical therapy.  We basically need to now strengthen and teach Grace to use the muscles previously under utilized due to the spasticity. 

I had never been to St. Louis before and never envisioned seeing the Arch under these circumstances, but I'm so thankful that we are here and that we are doing everything we can to help Grace become independent.  Have we made the right decision?  Only time will tell.

Updates to follow which will include before and after.  (btw...we can move her feet and legs so much easier's amazing)