Selective dorsal rhizotomy journey

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 I’m pausing the “homeschooling Gracie” blog to share about our Selective Dorsal Rhizotomy journey. I wish she could have gotten this done when she was younger but here she is, 17 years old, getting it done. SDR is a procedure where the neurosurgeon carefully isolates nerves in the spinal cord that are firing too much and causing spasticity. He then cuts a certain percentage of the nerve so that the signals reaching that particular muscle are much less. This means that her legs will be much more relaxed and hopefully have a chance to build muscle instead of being overwhelmed by abnormal tone and spasticity. 

Our goals are:

1) less pain.

2) less meds and need for Botox injections (her liver recently took a temporary hit from her meds so we definitely want to minimize meds). 

3) improved posture and walking. She’s not expected to have massive results because she’s so old and does not walk unassisted but this girl is super determined so I’m excited to see what happens! 

Gracie has been working very hard daily to strengthen her muscles in advance of the surgery. She’s been doing great in her gait trainer! She hasn’t done this well since before her derotational ostetomy and acetabular reconstruction (2018) which set her back significantly. (Her hip was dislocating so the surgeon reshaped her hip - very painful!!)

I have found it so helpful to see other parents’ stories of their child’s progress as I have researched and prepared but few children are like Gracie: walks with gait trainer (all supports in place) or full assistance, little balance, self propels with one arm only, sits independently but fatigues. Her surgeon will not be doing the palliative procedure but will do the conventional because she LOVES to stand, dance, and walk! 

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