Wednesday we had an appointment with one of Kaseys new specialists. One of the most frustrating things about moving is getting all new specialists. And with new specialists comes new opinions, new ways of doing things, etc.
I know some people heard me vent last year about an orthopaedic doctor who had me in tears by the end of the appointment. This one didn't get me to that point but.. he has left me with a multitude of different emotions.
Basically- he told us that with Kaseys mobility function (because as a orthopaedic doctor he looks at her mobility abilities and such rather than her lesion level per se) that there is not much we can do to rectify her current leg tightness. Essentially, even with me working with her and doing her stretches- the tightness in her muscles (contractures) has gotten to the point where the only fix would be surgery. More than one surgery actually- theyd have to do her hips, have her in a cast for awhile, do her knees and then cast her, then her feet. He said there was a possibility they could do the knees and ankles at the same time.
However, even though he would do this if we asked him to, he feels its not a good idea. He reiterated a lot of things I myself have said and know. A majority of children with Spina Bifida reach an age where even if they have been walking- they do switch to a chair because its hard to keep up with their peers using braces and canes or a walker. They get too big/too heavy/too slow and its just harder on their bodies. Is it really worth it to put Kasey through surgeries just to see her stand and take steps again?
This is what I have a hard time with. I have ALWAYS said that I am happy even if Kasey never truly walks. Her wheels are her legs to get around and she seems to be fine with that. However, part of me is sad for multiple reasons. I will most likely never see her even attempt a step again. I will most likely always wonder what I could have done better. I also am left wondering what to do next. I mean- we've always had goals towards walking/standing/some mobility. ALWAYS. From the time she was born we've always worked towards that because standing is good for her bones (which are osteopenic) .
Last year I spent a lot of time pleading, arguing and crying because we just wanted answers to what was going on with Kasey. I knew in my heart what was going on - we just had problems getting the correct person to listen. I can't help but wonder what would have happened if someone had listened sooner? The contractures didn't get bad until the tethered cord worsened. Yada, yada, yada.
Basically- I'm in a flux of emotions and I am sure that we will adjust and I will tread ever onward and upward with Kasey but right now... I am not exactly sure what is coming next.