Tuesday, June 17, 2014

Waiting... and waiting... and waiting.

I recall talking to a few moms of children with Linear Nevus Sebaceous Syndrome who also had epilepsy... They referred to this process (meaning the first time their child ever seized) as some of their worst times ever. I now see why. Oh how I wish it was as easy as taking a single medication and never seizing again.. Unfortunately, finding seizure management is trial and error, with breakthrough seizures and the horrible side effects of psychotropic drugs along the way. We've watched Zacchaio be euphoric over nothing, thrash his head dangerously against his bed, stay asleep and limp for 12 hours straight, become terrified amid deep sleep, make eye contact with us and not recognize we are his parents... All things I never thought I would experience as a mother. And so with bated breath following every new intervention, we wait to see which Zacchaio awakens and maintain hope that in the end it's the one with that signature Zacchaio sparkle in his eye. 

Zacchaio kept the EEG monitor overnight and after seeing constant firing for hours on end within the right hemisphere of his brain, they gave him Ativan (a sedative) in an attempt to calm the activity and provide him restful sleep.

Pediatric neurology signed off today, though not in the traditional sense. They passed the neuro baton to a pediatric epileptologist, one specializing in his new diagnosis. And we wait...

Having seen much success in Zacchaio's hemi-hypertrophy after beginning his homeopathic remedy, we also elicited the help of our homeopath to begin taking an additional remedy for his seizures. And we wait...

I haven't seen Alkaio for 5 days now and my heart is aching for a large dose of his 4-year old joy. After talking to him on the phone yesterday he told me he had another dream. "Dad, you, me, and Zacchaio were all at Disneyland!" We talked about him riding Buzz Lightyear and Space Mountain with Zacchaio one day. He and his brother riding together, and Aidan and me riding behind them. "And after we ride Space Mountain, me and my brother will say, 'Let's do it again!' And we do!" I was flooded with emotion and the feelings seemed all too familiar. It was because him telling me about his Disneyland dream reminded me of his elevator button-pushing dream while Zacchaio was in the NICU and how I dreamed about such a silly dream coming true one day. The unknown is impossible to contemplate, yet I find myself doing it constantly. I cried knowing that Alkaio was missing his little brother. I cried at the vision of Zacchaio not having the brain capacity to enjoy the childrens wonderland. I know that his future isn't defined yet, but right now the only way I can cope is to assume the worst in hopes that I'll be pleasantly surprised with an outcome that's any better.

1 comment:

  1. My heart breaks for what you guys are all going through... but I find peace in the fact that I just know that God has placed sweet little baby Z in yours and Aidan's loving care. With such a wonderful boy as Alkaio as his big brother, I have faith and hope that things will get better and his dreams of playing with his brother will come true. It just cannot be one bit easy what you're all dealing with but you are an angel, Alexis. I have never met you in person, as I am friends with Aidan, but I just feel like I know you and your spirit through your writings. You are an amazing mommy and I pray and pray each and every day that God will see you all through this rough patch. God bless you and your sweet family. Love and prayers to you all. -Jamie