Thrown a Curve

As usual, it's been a while since I have posted anything and we have lots of updates. We'll start with the kid...since this IS her blog...

Elle turned 5 in February and has taken on a whole new little personality.  She is still bossy as hell in her non-verbal way and I simply love it!  She continues to be aware of what's going on around her and  makes it her business to come out of her room to investigate the goings on in the living room...or any room  that she may feel she is missing out on.

She has done well in school and continues to show us all that she is capable of learning more.  Her therapists at school have taught her how to eat with a spoon.  Outstanding!  Now, lets be clear ...she is not yet scooping food herself, but they are working towards it.  She is, however, able to take the fork or spoon from you, feel herself  and then gently give the utensil back to you!!  This is huge and almost unheard of amongst kids with Elle's diagnosis.  As we say around here...diagnosis, schmiganosis...whatever!!

She does great in the gait trainer at school and walks the hallways like she owns them.  She has been doing so well that at our annual Orthopedic appointment with Dr. Loveless, we were ready to talk about a surgery for her leg that would essentially properly align her leg that turns in so that when she walks she would walk straight versus taking a step and planting her foot down on the other foot, thus creating another challenge for her.  Well...as usual, Elle had other plans for this appointment.

I took her down for X-rays and then we returned to the room, anxiously awaiting Dr. Loveless.  I was.So excited  for this appointment and what i thought it could mean for Elle.  After our usual greetings of hugs and a few other things we got right down to business.

"So..talk to me about her back." he said.  Now, I have know Dr. Loveless for years and know him well enough to know where this was going.  Something was wrong with the X-ray and it wasn't going to be good news.  I had been been here before with he hips.  I could feel the emotion start at my feet and quickly begin to rush up my body until I simply couldn't hold it in.   All i heard was "Scoliosis"....

I remember a few more things that he said after that but if it  wasnt for David recapping the conversation and again telling me what he said i would still be in the dark. The worst part was that he didn't   show us the X-ray...he knows me well enough to know that the visual of that would have been to much for me at that point.  For my own sanity at the time, i knew better than to ask.

If you are reading this and don't know us you are probably thinking...well...geez..there are worse things out there than Scoliosis!   Absolutely, there are. However...this was something that I thought we had beat.  It is very common for kids with Lissencephally to  develop severe cases of  this muscular disorder but Elle hadn't.  She is checked for it annually.  Maybe i got a little to comfortable with where we were and with what our normal had become.  Hearing that it had formed and progressed to a point that it needed attention hit me sideway.  All of a sudden it was a reality check of things to come.  I try my hardest to live in the moment when It come to Elle.  Sure, I plan things for my life, I set goals for things that I want to achieve but with Elle...we take it day by day.  I don't think of all the things that could go wrong.  All the things that come with this horrible diagnosis.  It is what it is and we will deal with things when they happen.  I simply can not sit still and live in fear anticipating things hat may not even happen.

So what next...what else...a turtle shell!!!  That's what we call her back brace.  Although she doesn't have it yet, we will brace her during every waking hour and see what results.  Elle is pretty resilient and i am  will handle the whole thing better than I will.