Josie's Journey

Maybe when things are going great, I feel less inclined to blog. No news is good news, as they say. But, there is so much good news to report. Where do I begin? These are all the things I want to share: 1. Josie is going to school in September! 2. She has been seizure-free for three months now! 3. She's so much more alert and present and just happier than ever! 4. Tanner has melted my heart with the things he's been saying lately. 5. A music group I'm a member of held an event and raised money for Foxg1! All of the above deserve a separate post, but I'm going to cover as much ground as possible while I'm here. 1. School. It's happening. Josie will be going to the Little Village School in September. Oh the range of emotions I've been experiencing lately. It really hit me hard when her therapies at home came to an end. All these amazing therapists that have been coming over three times a week for the past three years will no longer be coming over

Josie didn't get into the school I gushed about in my last post, the Henry Viscardi School. I'm not going to lie. It was disappointing. They had us go there for two days of evaluations and really sold us on the school. We spoke at length to the medical team about what to do in the case of a seizure. They wanted every detail of her medicines, and so much more. I really think they should consider changing their process. Why not just evaluate the child first? Don't give parents false hope. And then, if you accept the child, bring the parents in to discuss everything the school needs to know about that child. There was more that disappointed me in the way they handled it, but no point in writing about it. Their reason for not accepting Josie was, "We don't feel this is the right program for her." Ok, so why did you spend so much time telling me how the school has expanded its program to meet the needs for "kids like Josie." We saw a boy we knew fro

It's been too long since I've posted and I have so much to share! 1. So, after I wrote the last post saying that Josie hadn't had a seizure since Dec. 30th, she had one the next day. Go figure. That was in early February. She had another in early March. That's two seizures in the past three months! And to be honest, the second one is questionable whether it was a seizure or not. Two mild seizure in three months is an incredible thing to report. Since her seizures started in April of 2014, she averaged four a week. For the first six months, they were often grand mal seizures. As anyone who has been following this blog knows, we had been continuously adding and changing her meds to find the right cocktail to stop them. As I said in the last post, I'm crediting this to good 'ol marijuana! Who would've thought the one thing that saves my child's brain is the very thing kids grow up being told to stay away from. I swear I may go to Jamaica and pray to