Every Step of the Way...14 Days Until the Race

Some of you may be wondering if Toby will ever walk, so today will answer that question.  Our hope and prayer from the very beginning was that Toby would learn to walk.  A lot of his movement (rolling, sitting, crawling) was really delayed not just from the paralysis in his legs, but also from restriction of being connected to the ventilator tubing.

We began using these pedi-wraps to straighten his knees and give him stability in his legs.  You can see here, he's hooked up to his ventilator, but still practicing his standing.  After this we had to advocate very hard with the physical medicine doctor to write him a prescription for braces.  It took several months to convince her to give Toby a chance, instead of deciding for him that he would never walk.  His first set of braces were HKAFO's (Hip, Knee, Ankle, and Foot Orthotics).

Toby seemed to be making some progress, but he really has little knee or foot movement, so all of it comes from his hips.  We realized pretty early on, that he would either need a really strong upper body to do a swing through gait or reciprocating gait by using his hip flexion to move one leg and then swing the other leg. He also has a significant leg length discrepancy where one leg is longer than the other, so he's also had to have his shoes adjusted.

Then, he outgrew his first set of braces, and we moved and switched therapists.  This time they decided to try HKAFO braces where the knees were completely stiff and couldn't bend.  It seems great in theory because it gave him so much stability, but they weren't practical at all.  For instance, he can't ever wear them outside of therapy or in practice walking because the knees were always bent:

The process of getting casted for braces can appear medieval in some ways, but it's painless, and doesn't take very long!

Toby's also had a mobile stander that we purchased used to help him put weight on his legs.  He loves it when we get him into it, but with these recent back surgeries, he hasn't had an opportunity to use it as much:

In the past year, with his severe scoliosis, and the titanium rods holding his spine in place, we are realizing that most likely Toby isn't ever going to walk independently (outside of therapy).  I'm learning to accept that he's going to be a full time wheelchair user, but I have to be honest it's really a struggle.  He's lost a lot of function even in being an independent mover - sitting up on his own, going from lying to sitting.  The permanence of it has been very difficult to accept.  We don't even know how many wheelchair sports he'll be able to play because one wrong move and those rods can break.  I'm learning to truly take this one day at a time.  We do not want to put Toby in a box, and an amazing invention or alternative treatment for scoliosis could come out next year that could change his life.  He may decide at the age of 9, when he understands how his body functions that he wants to try walking again, and we'll let him. For now, I cling to the promise that God's plans/ways are not my own - and He has a perfect plan for Toby's life - even if that means he's in a wheelchair all the time.