West Side Story

Well we are headed back to Seattle Children’s Hospital.  Jackson is going to be having a series of tests done March 21-23.  We will be staying at the hospital for 3 days.  3 very long days I imagine.  While we are there Jackson will see a neuropsychologist, occupational therapist, and social worker.  He will have a long term Video EEG, 3G MRI (a more detailed MRI than a normal scan), and a PET scan.  Jackson had a long term Video EEG done last March.  This test measures his brain waves and seizure activity.  He will have electrodes attached to his head for about a day and a half, which means he is stuck in the hospital room during that time.  He’s much more active than last year so it will be interesting to see if we can keep him entertained for that long.  If all else fails I’ll just dance.  He seems to think that is funny.  The 3G MRI is something I have wanted to have done since we saw Dr. Dobyn’s back in October.  It is a clearer scan of the brain and can look at the layers of the brain.  This may give us an answer to the mystery of his left side of the brain.  That is his good side, but for some reason that is where the seizures are coming from.  A PET scan measures how your brain is functioning.  It looks at blood flow, oxygen use, and glucose metabolism.  Jackson will have to be put under anesthesia for the MRI and PET scan.  I always hate that.  I am not good with medical stuff.  I get queasy at the sight of blood.  Unfortunately for Kevin I usually end up leaving the room when they do the IV and he has to deal with it. 

While I am dreading this visit, simply for the intensity of it, I am anxious to get the results.  I so want to know more about Jackson’s brain.  It is such a mystery to me.  The more information I can get, the more I could possibly understand the complexity of what is happening in his head.  Knowledge is key, especially when you have a child who has a rare disorder.  Even though this trip is probably going to be an exhausting, frustrating and inconvenient one, it will be worth it.  Poor Jackson is going to be miserable.  He does not do well with new places and getting out of his routine.  One bright spot though – the cafeteria at the hospital has perhaps the best Snickerdoodle cookies I have ever had.  I plan on giving Jackson A LOT of those cookies!