Josie's Journey

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

We got the latest round of blood work back from the metabolic dr. and as Jamiroqui and Mr. Rogers said, "all is good in the hood"! The dr. was looking for potential metabolic disorders as well as more potential genetic disorders and thankfully he found nada! So she doesn't have a mitochondrial DNA mutation, or carnitine issues, or prader willi / angelman (thank god), or lactic acid, carbohydrate, nor a host of other deficiencies and/or problems. And no lead! I can always exhale a little bit more when these tests come back normal.

I've mentioned that we've been working with a holistic MD., Dr. Palevsky at Northport Wellness for about 4 months now. Of all the specialists we have been to, Dr. Palevsky, along with Dr. Sherr (Chiropractor who gives Josie cranial sacral adjustments every week), are the only ones with an actual plan for Josie. The plan follows Dr. P's belief that Josie's issues are most likely the result of "vasculitis caused by vaccines." In his words: With all of the work-up Josie has had, it appears that the etiology of her developmental delays remains unknown. I would venture to say that Josie has a condition called static encephalopathy, either due to an early significant hypoxic event which, from the history, does not appear very likely, or due to a significant toxic event. I cannot rule out the possibility of an early vaccine injury, perhaps from a vasculitis from the Hepatitis B vaccine at 6 days of age and at 1 month of age. Since the cerebellum is one of the

We're steppin' it up. In addition to all of Josie's therapies we are receiving from Early Intervention (NY state's program), we just started working with Amy Eapen at Keep Moving Forward , which is conveniently located at the same center as hyperbarics medical solutions. Amy is one of the few physical therapists in the country who uses Thera Suits and the Universal Exercise Unit to help with mobility, muscle conditioning, coordination and so much more. Amy offers an intense program where patients come 5 days a week for 3 hours a day for three weeks. We plan to do this eventually, but right now we're seeing Amy once a week for an hour and a half before an HBOT dive. In two sessions, Amy already sees improvements. There's no question Jojo has to build those little muscles, especially in her arms, so hopefully this will help her get there sooner. I love how all the therapists Jojo works with can't help kissing her the whole time.