Josie's Journey

Dave Matthews popped in my head just as I was ready to write a title. I do have so much to say and I'm hoping I can keep this post organized. So just as I've been feeling that I need to head down a new road, I spoke with 4 different women and one man who gave me just that - a new hopeful direction. I finally spoke with other moms who have experienced a situation similar to ours and who can say their children are recovering. To hear those words - and I'll end the sentence there. While I was at intense PT with Josie, a woman named Melissa came in with her son Matthew. I've seen them there for months and I couldn't get over how great Matthew looked. He's younger than Josie and was walking like a champ. I told her Matthew seems absolutely fine and she says she credits her team for getting him caught up. Part of her team is a woman named Jodie Collins, a PT who does CranioSacral Therapy. Melissa actually gave me Jodie's card a while ago, but I thought I had b...

We just got back from a Johnson family trip to the wild wild west - New Mexico - to see a Chinese Dr. named Dr. Jason Hao. Dr. Hao is one of the only Chinese doctors in the United States who practices an acupuncture method called Scalp Acupuncture. We did a lot of research on it and read many stories of people with severe brain injuries who, after just a few treatments, recovered. Paralyzed people started walking. When we spoke to Dr. Hao on the phone he was very confident he could help Josie. When asked what percent of his patients respond, he said "I'd like to say 100%, but most people don't believe that, so I'll say 99%." Music to my ears. He explained that it sounds like the neurotransmitters in Josie's brains aren't connecting and with Scalp Acupuncture he can get them to ignite. We decided to make it a family vacation and make it as exciting as possible for Tanner. I told him it's the start of our mission to visit all 50 United States. We d...

This post is dedicated to the people who work with Josie day in and day out to help her grow stronger - aka Team Josie. We had our 6 month IFSP (Individualized Family Service Plan) meeting with Early Intervention recently to assess how Josie is coming along with her current services. I was told that EI is unlikely to increase her services as they are going through budget cuts, but that wasn't the case for Josie. The coordinators understood that Josie needs more. While she is showing some moderate improvements, she has not reached a single milestone yet. She's still not sitting up unassisted, rolling over, making consonant sounds and/or anything above those skills. I personally think she's got these skills in her repertoire, but she loves the attention from all these amazing women every day. Smart cookie. So all of her services were increased by one. She will now have Physical Therapy, Occupational Therapy, Speech Therapy and a Special Educator 3x week for 45 mins. And h...

I brought Josie to an energy healer the other day named Russell Lipensky and we both got a treatment. When I was referred to him, I was told that "it's hard to explain what he does, but everyone who sees him feels better after." And after seeing him, that's how I explain it as well. He's a body healer who relates thoughts and emotions to specific parts of the body and releases the negative energy with a physical technique. For Josie, he immediately said that her whole tummy is shifted to the right and I was shocked because I always saw that and no other doctor seemed to think anything of it. He said her intestines and stomach are in the wrong place and he massaged her to fix it. He said she should start to gain weight now and the next day she gained a pound. Coincidence? **Who knows; who cares. She is gaining weight! He did more work on Josie (and she was so good) and then it was my turn. Without going into much, he told me my stomach was in knots and as mu...

Josie hasn't gained any weight in 6 months. In fact, she lost a pound. She was 17 pounds in Sept. and now the scale says 16. I don't get it. She eats all day and her legs look chubby. The metabolic dr. found nothing wrong. Dr. Palevsky thinks it's not about caloric intake, but rather the way her body uses the energy from food. In his words: she's getting fed enough food, and she is getting sufficient calories, it's just that she doesn't have the capacity to utilize the nutrients enough for her to grow. Dr. P feels hyperbarics could help this. He also says: If there has been a vasculitis contributing to her ongoing developmental and growth issues, and not an as-yet-to-be-determined syndrome that would help you understand everything that is going on, the vasculitis is happening at all levels of the body, including the gut and the brain. During our last visit he recommended we change her breakfast to dinner foods. I mentioned in an earlier post that he has her...

I couldn't wait to use that title (see music reference below). Here we are - me and the beanie in our cozy chamber! We've just completed 18 dives. 22 more to go. It's gotten much easier and even somewhat enjoyable. Josie is crying a lot less now and during some dives, she doesn't cry at all. She laughs at the baby einstein videos we've been playing. She thinks that cartoon elephant dancing to the sound of Mozart is hilarious - it's inside baby humor. Anyway, a happy Josie = a happy mommy. Music reference: Foxygen is an indie band (from L.A.) that is bringing something different to the genre. They're playful and funny, with a mix of 60's pop, 70s groove, and something new. The lyrics make me smile and that's a good look these days :). They deliver the message (to me, at least) that sometimes you just gotta lighten up. Here's Pitchfork's review of the band's sophomore album.

We all (and by "we" I'm referring to Team Josie - all her therapists, doctors, friends and family who take notice of Josie's progress) have seen some significant improvements in the past few weeks. Here are some recent observations at 14 months: - Her eyes aren't turning in as much. In medical terms, her strabismus seems to be getting better. I'm wondering if it has to do with the HBOT as I've read it could help visual issues. - She's also tracking with her eyes so well. I don't even think tracking is an issue anymore. - She's opening her hands more. Babies usually lose the "grasp" or "palmer reflex" at around 6 months, but Josie's been making those fists (daddy calls them boxing gloves) all along. While some people will compliment her nice grip, it's actually something we've been hoping would go away. Seems it's starting to! - She's kicking her legs. She just never did this before. When I go into ...