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)


GreenGirl said...

Wishing Grace a very speedy recovery and hope you all get up to the garden to enjoy God's beauty there.
Little Saigon is a great little place to grab a health bite too! Hang in there crew!

Unknown said...

Wow, I found your blog a few weeks ago when I was researching Percs, and now you've just done the other surgery I've been researching!! From everything I've seen, SDR is most likely going to be a wonderful thing for Grace. I hope she is not in too much pain today, it will be worth it in the end, I'm sure. Prayers for a quick recovery! I'm glad you went to St Louis, if we do it, that's where we'll be going.

Cary said...

Thank you so much for posting this update! I have been following your blog for quite some time and have missed your updates. Plus, we are strongly considering SDR for our son Ben...probably in I've been searching for other SDR blogs like crazy.

I know that life will continue to be very busy, but I hope you will find a little bit of time to keep us updated on Grace and her progress!

Jamie and Jill said...

Praying for you all. We are five months post op SDR and are very pleased with the results.

BusyLizzyMom said...

Wishing Grace a speedy recovery. What a huge decision to make but the results will make a huge impact on her function.
Good to see you blogging again.