It has been almost 48 hours since we officially shared with the world about Evelyn’s Life Changing Journey and the amount of support I have already felt is overwhelming!

Deciding to go for SDR was not an easy decision at first.  We were scared, terrified even.  We kept hearing “She isn’t that bad” and “That is too drastic!”  Cutting into your baby’s spine and having a permanent procedure done is scary!!  Surgery is scary, so we sat on it.  As the summer started we noticed Evie’s Botox wasn’t working as well and she started to fall, trip, and walk on her toes more often than not.  SDR started to come back up in conversations.  I watched the SDR support groups like a hawk and reached out to some local (and amazing) families who have been on this journey, started the process or were like us, not sure what to think!

I watched many videos by adults with CP and they often said they went from “mild” and being able to do so much as a child, to falling 10 times or more a day and being in constant pain as an adult.  Evie falls a lot now and as a kid that isn’t too out of the ordinary.  The idea of her falling several times a day at my age is not something I want her to experience if we can help it.

The stories that scared Brian and I the most and the reason we want to do SDR now is the chance of a decline in her childhood.  We were told stories of children who were mobile like Evelyn and by 5 or 6 they grew so fast and caused permanent damage, affecting their mobility greatly.  As her parents we have noticed that at 3.5 years old, her mobility (or at the very least her balance and walking gait) is worse than it was at 3 years old.  She is often wearing her AFOs (ankle foot orthodics) so the decline is not as obvious to our friends and family.

The more I read and learned about what Evelyn’s future was likely going to look like, the more SDR seemed like the right way to go.  Orthopedic surgery is practically a given for those with CP and SDR will hopefully prevent surgeries down the road.  Of course CP affects everyone differently and it is hard to predict what will happen like everything else in life but we feel SDR will give her the best chance for a life with less physical limits and pain.

Thank you to everyone who has watched our video, shared our story and donated.  It is so touching to see my amazing friends and family, people from my past and total strangers taking the time to help us.

Thank you!

This whole journey…JUST GOT REAL!

 

MeL