For the Love of Ivey

Seizures are back....

Finally on Day 11 Ivey made it through an entire day without a seizure.  Yippee!!  The past 11 days have been the extreme of extremes.  We know she has sinusitus - agian.  It is a monthly occurance and battle.  Due to a debunk immune system and abnormal facial structure it is a 'normal' for her. These things send her spiraling - I have to tell our medical staff how grateful we are for having them, and how thankful we are for trying to make the back and forth of communication simple and for trusting our judgement as much as we trust theirs.  It has been over a week and a half of meds and sleepless nights and the eagle eye of monitoring for the slightest hiccup in her behavior to signal she just jumped to the next level- I think we can exhale today- she's back.    Despite a seizure marathon, Ivey has been at school each day, working hard - keeping us busy here at home trying to stand (see video below), making the most of ballet class...

The past month or so has been a strange time. It seems that Ivey-lou-who bounced from the surgery last November straight into another chapter. I guess I would say that the ‘hallway’ wasn’t quite the hell that I was bracing for, not that I expected it to be too bad, just the unknown of what to expect. She has been happier somehow and with that she has found more confidence in her world. She has become a little more daring, trying her hand at a few new skills. And here in momma-world the wave of ‘not doing enough for her’ is engulfing me. It’s completely like the ebb and flow of the tides. Sometimes feeling like we are just enough steps ahead, other times, feeling so behind. She surged in the past few months. She needs more. Medically she has leveled out it seems, for now, there are still a few loose ends, always will be, but medical is not its typical anymore and her cognitive skills are spiking. Cognitive. Wow. She needs more in-put, more signs, more hands-on time and more help ...