Botox

James’ regular ENT had recommended we consult with another ENT about getting Botox injections in his salivary glands as a way to help reduce his secretions. Stacy and James met with her on Wednesday. She went over the treatment and the possible side effects, such as bleeding, infection, and temporary facial drooping. She also said that there is a surgery that she could do if the Botox treatments didn’t work. Stacy and I discussed it after I got home from work, and while we think we might do it, right now we want to focus on James’ brain because his seizures are still pretty out of control. We need to tackle one thing at a time. James has an MRI and MEG scan of his brain in a couple of weeks so hopefully those will help us figure out if there is something up there that is causing his seizures. As a funny side note, we’re still pulling glue out of James’ hair from the VEEG he had a couple of weeks ago.

IEP

We went to James’ preschool evaluation and IEP (individualized education program) on Thursday. This is becoming real now, and I don’t think Stacy likes it. She’s used to being the teacher in the IEP meetings; now she’s the parent. We feel that James is currently at a 3- to 6-month-old level intellectually and worked on setting some goals for physical therapy (PT), occupational therapy (OT), vision, hearing, and speech. Being a former special education teacher, Stacy was much more involved in the meeting than I was. I was holding James in my lap and just taking it all in. They are going to try to have a self-contained classroom for part of the day, and a blended classroom for the remainder of the day, which Stacy is happy about. During our original meeting at the school, they said that they were leaning towards a blended classroom for the whole day. Being in a self-contained room, the special ed students will get that dedicated time that they need. Of course, Stacy cried a little bit because her “little monkey is getting older and leaving the jungle”.

Nursing

And now for a little bit of bad news. About three weeks ago we were notified by insurance that James was approved for nursing care a couple of days a week. The plan was to have a nurse come over from 8 am to 2 pm on Thursdays and Fridays and then we would reassess after 30 days. On Friday they took nursing away from us because they said there is no need for it. They basically told Stacy that she does such a good job of taking care of James, that he doesn’t need a nurse. Don’t they understand that it wasn’t just about providing care for James? It was also about allowing Stacy to be able to get out of the house for a few hours here and there to take a mental health break. We’ll keep fighting for it, so we’ll see if we can get it back.