Josie's Journey

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.

If you read the previous post, you'll know we didn't have the easiest time with Josie's hyperbarics oxygen therapy (hbot). But, the name of the game is power through! I'm learning it's all about trial and error, plus me realizing that if Josie is crying in the chamber, it's ok - as long as she doesn't throw up. We tried again this past Thursday and we changed some things up, such as slowing down the time it takes to get us to pressure, positioning her differently, letting her take her bottle despite last weeks event, but not all of it and making sure she doesn't get air, and me trying to relax (I'm pretty sure she's feeding off my anxiety in there). We made it through the dive on Thursday, but then on Friday she was crying so hard and I got scared so I got us out. I thought we might give up at that point. We didn't. We went back on Saturday and the techs were amazing, they held my iPad outside with my Infant Visual Stimulation app flashi...

So Josie and I attempted to start hyperbarics oxygen therapy this week. Ummmm, it's not going so well. The first day we made it through the 70 minute dive, but the next 2 times didn't work out. Basically, we lie down on a single person stretcher and go into a clear tube. We can't have anything on us that can cause static and potentially a fire - so no lotion, nail polish, makeup, deodorant - nothing. Back to the birthday suit. In the first few minutes while they increase the pressure, you can feel it in your ears like on an airplane. Once you're at the right level, it stabilizes. Yesterday, I gave Josie a bottle during that time to get her to swallow and prevent her ears from hurting; it worked for that reason, but then backfired. Typically, while she drinks her bottles she gets a lot of air and as it turns out, the oxygen mixed with extra air in your belly is bad news. They warn you not to drink carbonated beverages before, so it's a similar effect. At just a...

I think it's time I start writing about our story. For one, it will help me chronicle and remember the details of our journey. Second, perhaps it can serve as useful information for someone else. And the third reason is purely therapeutic. This will be the home of 'Josie's Journey', the unraveling story of our precious little baby girl's fight to develop. Josie is just over one (13.5 months). She still cannot sit up unassisted, roll over, or do anything above those skills. She has been diagnosed with loose terms such as global developmental delays, developmentally disabled, severe hypotonia, static encephalapothy, and cortical vision impairment. After many, many tests, we still do not know the cause, actually by now I should use the more familiar language and say there is no known etiology. We've been to oh so many doctors; each week there's usually at least one appointment - I'm talking 2 neurologists, 3 ophthalmologists, 1 optometrist, a me...