Lost in my mind.
Lost in my mind."
Lost in my Mind by Head and Heart
Easy to get lost in my mind as Porter went home a month ago. William has been exceptional Dad having all three boys to manage. It has been decades since I have experienced this degree of independence and reflection. I am prone to ponder the ways in which we will move forward as a family. As many other families, we are in transition. Frazer and I will hopefully return home in two weeks; Houlder and Dell will leave for their respective schools in a few weeks; I will need a school for Frazer; and I will homeschool Porter.
Swimming in planning.
What it will look like when when we head home the first week in August? Will we stay in our house or move to the county? We will need to apply for SSI and school options for Frazer. An IEP (individualized educational plan)? City or County? Fairfax or Montgomery Counties? Affording a private specialty school for Frazer? Leave the East Coast?
NIH which has been a wonderful limbo. There have been answers which have led to more and more questions. Frazer lives an examined life pleasantly chatting with all inquisitors. I have sought resources and ideas to best continue to help him.
Frazer does not have Childhood Onset Schizophrenia.
Good news. But news that I hesitate to celebrate knowing the kids who have this disorder suffer mightily. We dodged this diagnosis and landed another one.
Frazer has Complex Partial Seizures which are on the epilepsy continuum. They are moments or few minutes in which Frazer’s spaces out — not grand mal seizures. He loses track of anything that happens during that time. Seizures occur in more than one part of the brain and can be the cause of the voices and hallucinations he has been having. He has now been on the anti-seizure medication for two weeks and reports feeling different. He appears more present. He also reports hearing and seeing less voices. He remains happy, engaged and fun. Here is an explanation.
With Porter’s departure, I have been able to spend significantly more time with Frazer. He has attended late afternoon camp at the INN which has involved crafts and games to theater performances. He has had fun. It has been nice to visit with him on the weekends, and we have been cooking and playing ping pong. Neither of us are skillful at ping pong.
Frazer does not have this genetic syndrome they were testing. I am not sure that the doctors were disappointed by this but they seemed surprised. We found he does have a bilirubin issue, called Gilbert Syndrome, which will only effect him should he ever need chemo. His GI issues are improving tremendously. We are waiting for some immunology test results but those should net nothing other than re-immunizing for Hepatitis B.
Our plans, what we will do, involve many moving pieces. For now, we celebrate a miss and begin to understand how to proceed with these seizures.
We are hopeful for Frazer’s life.
