Thursday, March 19, 2015

At our neurologist appointment a couple of weeks ago they mentioned Paloma might need to be seen by early intervention.  The peditrcian mentioned it months ago but I quietly tucked in the back of mind thinking she wouldn't need that.  In my mind that was for kids much worse than her.  I was doing everything natural and taking her off the evil meds so she would develop just fine I thought.

I've said this many times, I think one of the cruelest aspects of Dravet Syndrome is that children are born perfectly normal and then they may or may not slowly regress.  Keeping Paloma's development on track has been one of my ultimte goals.  I kept thinking if I could just get her off these meds, if I can just keep the bigger seizures at bay, somehow she will be fine. She might still have seizures but she will be normal. She will have a normal life.
But I can't deny sometimes she is far from me. Sometimes she looks right through me.

I look away when she is near other kids her age.  I don't want to face it.  

After convincing from other DS parents I went ahead and made the damn appointment. She didn't end up qualifying for speech therapy.  They want to keep a close eye on it since she has the potential to fall behind.   She will need physical therapy which I was not expecting.  She is very unsteady on her feet and has low muscle tone which is common for DS. 

All the therapist praised me for having her on cannabis oil and talked about how they had seen so many kids with seizure disirders not able to function with all the meds they are on. 

I think I'm slowly accepting that despite all my efforts, despite my natural, hippy inclinations about health, despite using my essential oils, despite her organic, grassfed, gluten, grain, dairy free diet and even despite her not being on meds and only cannabis she might be developmentally delayed.   She might never be able to have a "normal" life.  

What else can I do but accept it and move forward as hard as it is some days? 

1 comment:

  1. Oh babe, I'm all for the all-powerful woman, except that doesn't actually mean you have powers. So some of this is just the way life goes. Up and down. Round and round. I'm thankful you have David there to ride it with you!