Wednesday, January 30, 2013

Observations...

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 her room in the morning and she hears me say her name, those legs start kicking! Future Rockette?
- She's reaching for things while on her belly and bringing them to her mouth. She's just reaching for things in general more. While it's still hard for her to coordinate grabbing things, she's trying so hard and is very often successful.
- She's pulling her arm out from below her by herself when we practice rolling.

There's not a therapist nor a dr. within Team Josie that doesn't believe Josie will catch up in her own time. While other babies sit up at 4 months, Josie might sit up at 16 or 18 months - that's quite alright. Einstein didn't speak until he was 5.

When no news is good news

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.

Sunday, January 27, 2013

The Holistic Approach


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 first sections of the brain to begin maturing in a newborn baby, and most of Josie's current developmental issues stem from an injury to the cerebellum (motor delays, cortical visual impairment), I have to include the possibility of an early vaccine injury. With a normal MRI and a normal birth history, the hypoxic etiology at birth seems less likely as a reason for her developmental delays. If Josie sustained a vasculitis or a toxic insult to her brain secondary to her early vaccines, she still would've experienced a loss of oxygen to some very important brain centers.

So his recommendations have been a bunch of supplements we started about 4 months ago including pro-biotics (why not?), glutithione (antioxidant? sounds good), vitamin D/K (yes, please). We also tried a supplement mix called agape and a lemonade flavored omega 3, but Josie had a hard time tolerating those so we're taking a break from them. Now, we're adding a bunch of plant stem-cell based medicines (a medicinal practice called Gemmotherapy) to support her during the hyperbarics oxygen therapy. More on that in a separate post.

Dr. P. also dramatically changed Josie's diet to an Ayurvedic approached diet to promote energy. So instead of cold/damp/wet foods, we give Josie protein rich, warming and energizing foods. Less fruit, way more vegetables. I make bone soups. As a former and probable future vegetarian, my first time purchasing meat on the bone was kind of comical. In these bone soups, I put all sorts of veggies and beans and then I puree different combinations, so she might have a chicken vegetable puree that's heavy on beets, or a red lentil bean soup made from a chicken or red meat stock. My house smells delicious when I cook for her. She has quinoa porridge for breakfast (Yup, Goldilocks ain't the only one who eats porridge), made with the meat stock for protein and energy and I mix in either a sweet potato, a little apple (shhhh), and lately I've been putting eggs in it - and that is to add more calories and fat.
You see, Josie has not gained any weight since September (4 months). The metabolic Dr. agrees with Dr. P that it's probably not a story of her not getting enough calories or fat (she eats all day!), but it's part of the bigger issue that her body isn't using the calories sufficiently to gain weight. So we're adding some more substance to each meal, and using coconut oil when we warm everything up, but it seems that her weight gain will come as her overall development improves. I don't know! This one threw me for a loop. She did grow in length - maybe she's just poised to be a super model. Wouldn't that defy the law of genetics!?

Wednesday, January 23, 2013

Let's get Physical! (yeah I went there) Intense PT.



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.

Monday, January 21, 2013

Success! Oxygen is all around.

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 flashing pictures and they kept the phone they use to speak to me on next to the iPad so we can hear the classical music that plays along with the pictures. We made it through the dive and then the next 2 as well.

She does cry on and off for most of the 70 minutes, but she also calms down and laughs. Getting through it is the goal. I'm confident she will start to get used to it and cry less. The good news is - we're diving! We had 4 successful dives in the past 5 days and we'll start our 5 consecutive days schedule this week.

They say it's too early to really notice any benefits from it yet, but I will say she's been sleeping through the night! Josie has had major sleep issues all along. Typically, she either goes to bed around 7:30ish and wakes up around 11-2am or she just doesn't fall asleep until midnight, but since we started diving, she's been sleeping 12 hours straight! That alone is worth the time and money!

So if you're looking for us, we'll be in a tube for the next 2 months.

Music reference: well, I was thinking about the Interpol song 'Success' when I wrote that title, but JayZ & Nas also have a song called 'Success' as I bet tons of others do too.

Sunday, January 13, 2013

Trying to Diiv.... Hyperbarics Oxygen Therapy

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 about 25 minutes, Jojo was screaming crying - red face, boogers flying. I told the guy there to get us out. It takes a few minutes to decompress the oxygen and get you out of the chamber. And if they do it too fast you run the risk of a collapsed lung - sweet. On our way out Josie started throwing up. It was a pretty traumatic experience -for both of us. She threw up again later that night.

We decided to try again today, but with just a pacifier to help her suck in those first few minutes instead of a bottle. It didn't work. She's not a big paci baby and after about 1 minute my ears were really hurting so I was praying she wasn't feeling what I was feeling. She was. She started crying very hard again and I knew if I just kept us in there she would cry so hard that she'd throw up. So we got out. We're planning on trying again in 4 days.

Why hyperbarics oxygen therapy? The short answer is that Dr. Palevsky and Dr. Sherr are recommending Josie do HBOT as it should bring more oxygen to her brain as well as throughout her body, which should help her develop. We have done a lot of reasearch on it since, and after reading so many incredible stories, we agree it is worth the try. More information here.
And here is a blog from a mom who has seen great results from hbot on her son who suffered a bad brain injury.

Music reference: Diiv is an indie band from Brooklyn with that hazy dreamy pop sound I'm always attracted to. Here's a review of their 2012 album Oshin.

Friday, January 11, 2013

Here we go...

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 metabolic dr., endocrinologist, cardiologist, g.i. dr., chiropractor, holistic Md., pediatrician, geneticist, nutritionist, and a partridge in a freakin' pear tree! I'm a full time medical momager! She has 5 therapists that each come over twice a week - they're like family.

The holistic MD we've been working with, Dr. Palevsky, suspects that Josie has undergone some level of vasculitis that caused a lack of oxygen to her brain and therefore a degree of damage to her cerebellum. And here's where the bands of controversy come marching in... He believes this is most likely due to the vaccines she received early in life, such as the HepB vaccine at one week old. This diagnosis is a toughie to mention to any of our western doctors. The metabolic dr. we just saw, Dr. Biala, thinks it could be either a genetic disorder or a metabolic disorder. We've already done a ton of genetic testing, which all came back normal, but he says that was all just looking at chromosomes and with 30K genes in our bodies, any one can be the cause. He did a lot more blood work that we're waiting on. Josie's MRI, thankfully, showed a normal brain, so if there is any degree of brain damage, it's undetectable.

I'll continue to write about all of our experiences - from Josie's symptoms, the doctors visits, the discoveries, the treatments, and anything and everything else along the way.

I was recently asked by one doctor, "how does it feel to be the mother of developmentally disabled child?" I was pretty shocked at the question as I hadn't accepted that term yet although I'm starting to. But to answer his question, I said it's the feeling of never stopping. There's always something more to learn, something more to do for her. Like I imagine any parent would feel, there is nothing I wouldn't do to ensure that Josie will live to the best of her potential. I realize this will all take time, it will be a journey.. And so now I'm writing it down.



Music reference: Here we go is one of my favorite songs by Dispatch.