To seize or not to seize, that is the question

2012-02-27 16:31:53 by Sarah Sanford, Patient Family, as posted on the blog.

At least that has been the question swirling around Baby Jude’s neurological episodes in the past month or so.  Baby Jude’s team - therapists, Vance and I, cousins, aunts - have witnessed and/or noted a major increase in body tremors and new seizure like activity. He has had an additional EEG, and an extended EEG is pending insurance approval.

I do not want to believe that a seizure disorder is emerging and declaring itself. But the symptoms, episodes and the people smarter than me, with multiple titles on their Akron Children’s Hospital badges, are concerned, and that makes it difficult for me to deny.

In fact, I’d have to be deaf, dumb and blind to not believe that this is seizure activity. My Baby Jude’s head and brain have been through so darned much in a few short years.

He didn’t get the benefit of proper nutrition or vitamins as he developed. He was abused by alcohol in utero and he had a stroke with lasting repercussions. (We have ruled out all blood related disorders that could have caused a stroke and would put him at risk for another.)

His skull needed to be molded and reshaped by wearing a tight helmet 23 hours a day for close to a year. He will forever have extra cranial fluid surrounding his brain and a midline deformation down his skull.

His brain is struggling to heal from the stroke and compensate for his sensory processing disorder. Every day is a little struggle for him to not get overwhelmed, to negotiate loud sounds that startle him, to push through his incredible urge to sleep.

His sleep issues have altered his life and our family dynamic dramatically. Baby Jude needs 12-16 hours of sleep per night, and a good solid nap to boot. There are no if’s, and’s or but’s about this right now.

At his last quarterly check up, I voiced my concern about the amount of sleep Baby Jude needed and his doc quietly asked if I remembered the story of Congresswoman Gabrielle Giffords.

“Of course,” I said.

Dr. M said, "Well, she needed to sleep for 2 months straight before her brain could even start to heal.”

My response: “She got shot in the head. Jude did not.”

Her response, even quieter this time, was, "Well, he kind of did, just before he was born."

That is a tough conversation to have. To recognize that this little man’s brain got a bit scrambled up, that he took a few hits he didn’t ask for nor deserve, before he had the chance to choose his own healthy life or before I had the chance to help him choose it.  It’s a tough conversation to have.

So, here we are - brain time.  Sensory processing disorder is rearing its ugly head by the minute, seizures appear to be coming at an all too frequent clip.  And as I type this, my sleeping Baby Jude rests after an episode this morning.  While we were at Akron Children’s.  Again.

Thankfully, Jude has an incredible team of doctors, therapists, teachers, advocates and people who are helping me make the best decisions for him.

Remember when I mentioned the parental level of acceptance we all need to come to, when you go from diagnosis world to disability world?  Maybe I was a little out over my skies to think I had it all handled and that I wouldn’t fall.

I am now convinced that the only way to navigate this world is to worry less about falling.  The only way to do this well is to know you are going to fall.  That some news is going to be less good than you anticipated and some will be better than expected.  That it’s ok to fall.

As long as you get right back up, continue to protect that beautiful, concerning, misshapen head on the gorgeous face of your baby boy and continue to make good choices for him.  And continue to live gratefully, prayerfully and hopefully.  Whether seizures are our new house guest or not.

Grateful, Prayerful & Hopeful.

Read more about Baby Jude in the rest of Sarah’s blog posts.

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