SDR: taking the plunge!

 Well, we are taking the plunge: On June 13, Hannah will undergo a selective dorsal rhizotomy in NYC.  She will be there for about 3 days and then transfer to an inpatient rehab facility for about 4-6 weeks of intensive therapy so that she can rebuild strength in a body without so much tightness, as the surgery will be cutting many of the nerve rootlets which cause the spasticity in her lower body.

We have spent a LONG time thinking about this procedure (at least two years).  We've talked to parents, doctors, therapists.  We've looked at various studies showing the results of this procedure on kids with the kind of cerebral palsy Hannah has (spastic diplegia).  We've researched where we should have it done, whether or not we should look at a place that offered inpatient rehab, whether or not we should do it locally, etc etc etc.  I don't think I've ever thought this long and hard about anything before.  Then again, the stakes have never been so high.

It's not like this surgery is necessary or required for Hannah to lead a full life.  No one will tell us it is 100% the right thing for us to do for her.  And it will be hard work for all of us to undertake this.  We will be away from home for at least a month, we'll be separating the family unit during this time, and require an inordinate amount of motivation and energy and patience on all of our parts to ensure she gets the maximum potential from this procedure, which is pretty useless unless you put in the recommended intensive therapy after, for upwards of one year.  It's a long surgery, it will cause her some pain, and then she will be kind of like a wet noodle for awhile after, not able to do many of the things she can do now.  No one can tell us how long her recovery will take, and how soon before she is back to her pre-surgery functioning.  We also can't anticipate how she'll react emotionally, or how Isabelle (and even Sam) will fare during this time.

But after all of this thinking, researching, and questioning, we have decided that it is worth it to do this for Hannah, because the benefits, we believe, will outweigh the costs (I'll have to keep reminding myself of this when the going gets tough!) In terms of an ideal candidate for SDR, Hannah is a textbook case on all measures and therefore is likely to have a very positive outcome.  What this means is that while it won't cure her CP, it will help her to move her body in a way that is more efficient and fluid; it will reduce the chance that she'll develop bony deformities and need multiple orthopedic surgeries in the future.  It will lessen the likelihood that Hannah will develop pain from having such spastic muscles.  In a nutshell, it will increase the quality of her life and maybe even increase her functional independence.

So we are going to go for it, and we think it will be well worth it.  It might be really hard and take awhile to see the benefits of this hard work, but we feel very lucky that this option exists for Hannah.

I plan to use this blog to keep people posted on Hannah's progress after surgery, so stay tuned!