Saturday, December 7, 2013

As long as one and one is two..

That's a line from the Paul Simon song "Father and Daughter."

Josie just turned two! It was two years ago on the day before Thanksgiving when we were blessed with the greatest gift. Our little girl, Josie, was born. We knew she would bring so much love to our family, just like her brother, but we didn’t know how much she would teach us.

Josie, our mama pajama, jojo beanie, lollipop, and countless other names, is our constant reminder that some of the greatest challenges in life can also be the greatest sources of joy. My world has grown so much larger in these past two years. This little bundle of pure love has shown us so much.


Friday, November 15, 2013

Scooting!

Josie is starting to scoot! She's going through a developmental growth spurt right now!

Tonight she moved her little body more than she ever has! She can move herself in a circle around the mat and she's starting to inch forward! We took off her pants to make it easier for her. Try to resist the urge to bite that little tushie.

Look how determined she is to get that ball!


Josie is also doing better in her walker (gait trainer) every day. She walks backwards in it a little and even takes a few steps forward with a little help. It's definitely helping her gain strength in her legs. We saw a new neurologist last week, Dr. Molofsky at Beth Israel in NYC, and he commented that her legs are strong. That was a first! As far as our visit with him, he was a really nice and clearly a very smart neurologist, but he didn't have any answers for us. His recommendation was to do the whole exome sequencing test, which we've already done.

Anyway, Josie is impressing me so much these past few days. I'm making a prediction that she will be scooting regularly by Tanner's birthday on March 19th, 2014.

Thursday, October 24, 2013

Whole Exome Sequencing

First, the email I sent out brought us so many connections. We have a list of doctors we want to see and new avenues to take. Thank you to those who went out of their way to help us and even just to reach out to me. It means more than I can express here.

Last week, we saw Dr. Iglesias, Pediatric Geneticist at Columbia University Children's Hospital. It's actually called Morgan Stanely Children's Hospital. Anyway, he was great. He spent a long time with us, discussing everything we needed to discuss. I went there knowing I was interested in doing the Whole Exome Sequencing test for Josie and that is what we did.

Whole Exome Sequencing has not even been around for a year. It is a breakthrough in science that is leading to the discovery of many undiagnosed genetic disorders.

In simple terms, the test looks at every single gene in the genome - all 21,000 - and can tell us which, if any, have anything wrong. Then they can compare that information to the database and see what it means. So say they found Josie's gene #5032 had a deletion, they can look to see if there is a record of other people with the same gene abnormality and ask, do they present just like Josie? It could just mean she won't have freckles. There is also the chance they find gene abnormalities, but there is nothing reported in the database about that particular gene. In that case, we are contributing to science.

The results will take about four months, so we will wait and continue to press forward. In the mean time, we were supposed to see a new neurologist this week, Dr. Molofsky, at Beth Israel. He had to cancel so we are waiting for our new appointment date. I was thrilled when Dr. Iglesias said he had worked with Dr. Molofsky in the past and he will call him after we see him so the two can discuss. He also recommended we see another neurologist at Beth Israel when we are there, who specializes in movement disorder.

Dr. Iglesias pointed out that Josie has Dystonia, which we know, but I don't believe I've written about it here. It's a significant descrition of her presentation. Dystonia explains her repetitive movements. Potential causes are genetics, birth trauma, and/or a reaction to pharmaceutical drugs. Oy. These uncontrolled movements are also called Ataxia. I can't quite figure out the difference.

On a side note, Josie was a trooper when they poked her little hand with a needle to draw blood. She didn't even cry! Tough cookie.
Meanwhile, she's very busy with her therapists. Our team is amazing! In fact, we had a team meeting last night and everyone agrees Josie is showing progress. They all also agree she is so determined! She laughs all the time and makes everyone around her smile. Stacy, Josie's OT said last night with such conviction, "She is just the best."

Some Recent photos:

We got Josie's gait trainer! Thank you, Early Intervention! She is already starting to move her feet and take steps on her own - mostly backwards, but that's where it starts! And she loves seeing the world from this standing position - where she should be at this age.

A few months ago, while sitting on her own, Josie would fall forward and could not pull her body back up by herself. Now she is pulling herself back up! She still needs to master side-to-side, but front-to-back has come a long way!


It's a pumpkin on a pumpkin!!

You can't tell here, because taking pictures isn't Tanner's idea of fun, but he had so much fun pumpkin picking! It was a perfect Fall day at the farm.





Monday, September 16, 2013

This is Josie!!

If you're having a bad day and you're feeling blue, just watch this video. Josie's laughter is contagious!!






Sunday, September 15, 2013

Casting a wider net...

I sent out this email (text below) to friends and family to cast a wider net in our search to help Josie. Thank you to my sister-in-law, Jen for the suggestion. The emails I'm getting already are so heart-warming and helpful.


To anyone reading this, thank you.

The idea of this email is to help us find help for our daughter, Josie. We figure the more people we talk about Josie with, the more likely we are to find the doctor or person who can say, "I've seen this before." We're casting a wide net.

As of today, Sept. 14, 2013, Josie is one week away from being 22 months old. She is developmentally about 5 months old.

Josie's symptoms/diagnosis are: Global Developmental Delay. Hypotonia (severe), and CVI Cortical Vision Impairment. She cannot sit up unassisted, roll over, or perform anything above those milestones. Her head circumference is below the charts, and now her weight and height are hovering below the charts as well - although she has gained a little in the past month.

The first sign of something being wrong was at 4 months old when she wasn't tracking things with her eyes. We saw a pediatric ophthalmologist who told us to come back in 2 months. At six months old, she didn't meet any of the milestones at her pediatric check-up and we started the ball rolling with neurologists.

We first saw Dr. Ronald Jacobson who is the Chief of Pediatric Neurology at Westchester Medical. He did an MRI and (over time) multiple EEG's - two being 24-hour Video EEGs. All tests showed a normal brain. When we moved to Long Island last summer (2012), we switched to Dr. Joseph Maytal who is the Chief of Pediatric Neurology at LIJ. He looked at her MRI films and he also saw a normal brain and he sent us for complete genetic testing.

All the genetic tests came back negative. They tested for thousands of possible syndromes with a micro-array test, which is like an accordion file of the genes. So where they previously had to select which syndromes they are looking for, this covers thousands of potential genetic abnormalities. Plus, they tested specifically for syndromes given her symptoms.

Josie has also seen a pediatric endocrinologist, a metabolic doctor, a cardiologist, a gastroenterologist, several ophthalmologists, an optometrist, and the world's leading expert on CVI, Dr. Christine Roman Lantzy. She now has 7 therapists through the state-funded Early Intervention program, plus she goes to intense physical therapy (with equipment).

On the alternative front, Josie did 40 HyperBaric Oxygen Therapy dives, and saw a renowned scalp acupuncturist in New Mexico. I often speak to a spiritual healer. We're currently following a homeopathic regimen of supplements to detoxify her of toxins found in a naturopathy saliva test, and she often gets cranial sacral therapy.

We are open to anything that can help her.

So far conventional doctors have not given us a diagnosis, other than the diagnoses I mentioned. They have not been able to give us an etiology for her hypotonia and developmental delays. It's been a series of, "I know this is very frustrating for you, but you are doing everything you can do." On the alternative front, it's the same etiology every time and that is where the bands of controversy come marching in. They, including holistic MDs., all believe Josie experienced a degree of damage to her brain and nervous system due to toxic poisoning from vaccines.

Like I said, we are open to anything that can help her and we'll rule nothing out unless it can harm her.

We say that we’re in search of Dr. House - the one doctor who thinks outside the box and might have seen this before. Our thinking is that the more doctors who see Josie, the more likely it is to find that one who might know something more.

This is incredibly challenging, but we have so much hope for her. Everyone who works with Josie notes her tremendous will for such a little girl facing so many challenges. She tries so hard to move her little body. And she is making progress, albeit very slowly. And being so young, we’re confident that because she has brain plasticity, she can overcome this and begin to thrive - if we are on the right track. She's also just so loving, happy, sweet, and adorable :) (spoken like a true mom).

Thank you for reading this. You can read more about Josie's Journey on her blog www.josiedevin.blogspot.com

Please feel free to share this note with anyone and feel free to contact me with any thoughts: nicolejohnson924@gmail.com

Warm regards,

Nicole

Monday, August 26, 2013

Hold My Breath

Oh the irony of this song/blog title! "Hold My Breath," a song by a band I love called Holy Ghost! (The exclamation point is actually part of the band's name).

We just saw them, in Montauk, last Saturday night a few hours after returning from three days at Stonybrook Hospital. We were in the hospital, basically because Josie Held Her Breath.

At around 2:50pm Thursday August 15th, Josie was in her crib napping. She suddenly woke up screaming/crying. I was sitting on the front porch on the phone and Janice, our nanny, was in the bathroom just across from Josie's room. Neither one of us ever heard Josie scream like this before. I hung up and ran inside. Janice saw her in her crib, screaming with her arms and legs stretched out stiff. She picked her up and met me in the living room. I grabbed Josie and was petrified to see this screaming. It was like she saw the devil in front of her. Her arms and legs were stiff and she wouldn't stop.

I called 911.

At that time her face started to turn a tint of blue and her lips were clearly blue. She wouldn't respond to us and her eyes were fading off to the side. She wouldn't respond to us at all. Janice and I both thought she was dying at that moment. Janice was wailing, "Josie noooo." It was the scariest moment of my life. I started giving her breaths as I was answering the dispatchers questions.

"Where do you live?"

I gave her our Montauk address and said, "tell me what to do."

She said, "lay her down on the ground and listen for her breaths."

I followed her direction, but I couldn't tell if I was hearing breaths. Then Josie gagged. I sat her up and she threw up a little. I realized this meant she was breathing. I heard the ambulance outside. This was only about 4 minutes after I called. What seemed like 10 EMTs and police officers rushed in and one assured me she had color in her face.

I grabbed Josie to my chest and ran to the ambulance. I yelled for someone to get my phone, which someone did. I didn't grab my bag or anything, which never mattered. Within moments I was strapped to the gurney holding Josie as tight as I could in my arms.

It was 3:00 pm. I yelled for Janice to stay home for Tanner who would be getting off the camp bus in 30 minutes.

Josie was passed out on my chest, but the pulsox on her toe and the color in her cheeks all indicated she was fine. The ambulance flew to South Hampton Hospital, sirens blazing, passing every car on the road. I thought, ok now we're all going to die. The EMTs riding with us were so comforting though. I just held on tight to Josie, sleeping soundly on my chest. The EMTs thought it was a seizure. It seemed like a seizure, especially her passing out right after. But she had been tested 3 times previously for seizures and all 3 tests showed no seizure activity.

South Hampton was basically a layover. When we got there I asked to be transferred to Stonybrook, which has a great pediatric hospital. South Hampton doesn't have pediatrics. I knew we were going to need a pediatric neurologist.

So we did an overnight Video EEG to test Josie for seizures. The tests came back negative (exhale). The neurologist believes Josie experienced something called a "breath holding spell." Apparently, babies do this. They cry so hard that they wind up holding their breath and pass out. The good part is that once they pass out, they breathe again. Babies don't die from this and it can happen to any baby, healthy or not. The question is why was Josie screaming like Freddie Kreuger was chasing her? The suspicion is that maybe it was reflux.

Last year, actually the same week, we were in Westchester Children's Hospital doing the same test with Josie. That video EEG (VEEG) was negative as well and the neurologist diagnosed Josie with "silent reflux," which is why she was having the spasms that sent us to the hospital in the first place. We took her to a pediatric GI who put her on Prilosec, which did nothing. The holistic dr. we saw next, Dr. Palevsky said, "take her off Prilosec immediately, and take her off dairy." It seemed to be the answer, we didn't notice the reflux once she was off dairy.

But in the past few weeks before this incident she was doing the "spasms" again. I caught it on camera and sent the video to our LIJ neurologist, Dr Maytal. In fact, I spoke to him just hours before the incident occurred on August 15th. He said he does not believe what she is doing is a seizure. So we are investigating the reflux connection. She was has been eating baby yogurt again. Maybe that was it. We took her off a multi-vitamin that we noticed made her burp a lot. We also changed her bottle (almond milk) to a "reflux" style bottle. Before we change too much, we want to see if that helps.

I'll take her to see another GI, and I am doing another saliva test with Wanda (our naturapath) to see if she sees anything that could be the cause.

So for what was an incredibly terrifying experience, it turned out not to be a huge deal. Jojo doesn't have seizures, and we will get to the bottom of the reflux. I was incredibly grateful how quickly the ambulance showed up, how comforting the EMTs were, and to have learned that in moments like that, the mama-bear-instinct kicks right in. I became calm (although frantic inside), and I was able to do what needed to be done.

So how was your week?

Anyway, while I thought our plans to go see Holy Ghost! that Saturday night would never happen. We did go. They played "Hold My breath" I danced my butt off..and I exhaled.


Josie with Daddy in the hospital. Rich got from the city to Stonybrook before we even got there!


My sleeping accommodations night 1. This chair is like a movie theater seat that reclines with your body weight. So between the night nurses talking outside our door, the person coming in to check vitals, and this chair that I couldn't lean back in, sleep wasn't an option.


Only Josie can still look adorable and beautiful with her head wrapped up.


Avatar? Buddah? Rapper?


On our way home!!


Holy Ghost!








Monday, August 12, 2013

My Little Girl (on a lighter note)

The blog title is a song title.. My Little Girl - by Jack Johnson.
The lyrics go like this:
Hey little girl.
Look what you've done.
You've gone and stole my heart and made it your own.
You stole might heart and made it your own.

Jack was actually on our boys names list, and then we'd have our own Jack Johnson, but Tanner won.

Anyway, GOOD NEWS!!! Josie weighs almost 21 pounds! I brought her to the gym in Montauk to weigh her and as we suspected, she has gained about 3 pounds! If you've been following this blog, you know what a big deal that is! She's also getting closer to rolling on her own. She was never able to pull her arm out from under her while practicing rolling and now she can. She continues to show real signs of improvement. And she is just so so sweet and adorable.

On a separate note, I am in search of more doctors. We're looking for a new neurologist, and any top docs who specialize in developmental delays, brian injury, etc. I just want to keep up the search for Dr. House. He's got to be out there. There's got to be someone out there with more answers and more ways to help. Josie is so young with such tremendous brain plasticity and will, I'm desperate to find more help.

Here's Josie and daddy having fun at the beach...


Tuesday, July 16, 2013

Summa Summa Time - and someone's improving!


We've moved out to our beloved Montauk for the Summer and someone loves the ocean air.



We decided to take a break from Josie's typical schedule of back-to-back therapists and appointments all day. We all needed a break and I think Josie can use some new sensory experiences. That said, I did find an amazing OT in Montauk who is coming twice a week, so she's still getting some very good therapy. I really love this OT, Lori.

The truth is that since we've been out here, I've had some scares that she was not progressing, but in the past few days, she's wow'd me. Today I almost cried when she basically rolled over by herself! She's moving so much more, scooting her little legs under her belly, and reaching for what she sees in front of her - with both hands! This is new.

I recently described Josie's development like Groundhog Day, she's been developmentally 4 months since being 4 months - so for 15 months. I am pretty certain she's gained a month. She's getting there. And she's so ambitious!

Josie is in phase two of Wanda's homeopathic regimen; she's taking something called thuja which removes trace toxins from vaccines. All I know is that she's definitely improving.

Here she is reaching for her favorite ball...



Tuesday, June 11, 2013

Heavy Feet! 18 Month Update

Josie is now 18 months old. Here's an update...

First, the most exciting news:

At the last weigh-in with Dr. Wilkens (pediatrician), we finally saw the curve on the growth charts move up! Josie gained one pound and her head circumference increased by one centimeter! One lb./cm might not sound like a lot, but this hasn't happened in nearly 9 months! I would stand by that scale like a contestant on The Wheel of Fortune afraid of landing on Lose a Turn. Month after month, I'd wait for the digital number to hold steady and when it finally does, it always read between 16.8 - 17.5. How was this possible? Pat Sajak shakes his head like, sorry dude.

Well, she is now 18.7 pounds, 30 inches tall, and her head is 43cm. That is still below the charts for weight and head, but seeing the line on the chart move diagonally upward and not horizontal is all that matters - we're in the game - on our way to solving the puzzle. For height, she is actually on the charts - about 8%. Supermodel.

We're staying the course with Wanda's regimen. I just feel good about it. We're halfway through phase one, which concentrates on removing the diphtheria from her system. I don't know if her weight / head gains are due to the new regimen, but she's been on it for about a month and this all occurred in the past month.

Jojo is showing some other improvements, still minimal, but significant. She is reaching and grabbing more. She loves to grab my face, which reminds me to keep her nails short. She is kicking her legs so much more. She just really wants to move. While sitting assisted, she can pull her body weight up when she leans forward (See picture below). She can even sit unassisted for a few seconds at a time. She follows us with her eyes around the room. And when we hold her, she holds her body up very straight. She used to always rest on me.



Right now our team consists of:
Our regular therapists through Early Intervention: Michelle (PT), Jan (Special Educator), *Mary (our new Speech/Feeding Therapist), and Joanne (Vision Therapist). Stacy, (OT) just had a baby girl so we'll see her again in a few months.

We're still seeing Amy and Erica (intense PT) at Keep Moving Forward. I'm looking forward to seeing them more once we've completed Wanda's detox and remove the toxins that are preventing her from thriving.

Josie has been seeing Jodie Galler Collins in Plainview once a week. Jodie does CranioSacral Therapy as well as energy healing. She was also a PT for Early intervention for many years. I can't quite tell what Jodie is doing for Josie, but I believe it's part of the formula to help her. She came very strongly recommended from some of the other moms who have seen their kids recover from various neurological/toxin related issues.

A few weeks ago we started seeing a chiropractor named Michael Cindrich, who happens to practice twice a week right from our town! The other days he is in NYC. He does CranioSacral on Josie as well. On the first visit he said her neck was very tight. There were blockages preventing her cerebral fluid to move down her spine. Over the past few weeks, he opened them up and today he was so blown away how open her pathways were - there were no hard blocks. He said "I can play ping pong with her cerebral fluid." That's a good thing. He even told me not to pay for the visit since he didn't have to do anything. His words: "she's on her way back to us. She will be rolling and sitting up soon." He is very hopeful that things will change once we get through Wanda's homeopathic regimen.

Also part of the team is Matt DiLorenzo, a spiritual healer who lives in Italy. I've mentioned him briefly before and I plan to write more about him in a separate post. It's very hard to explain what Matt does and any skeptics out there might consider it crazy. I don't have energy to focus on that kind of thinking - or any negative thinking come to think of it. He's pretty fascinating and encouraging and I believe he is helping Josie - and me and a few other people I've sent his way recently. More to come on Matt.

We are attacking this from every angle, from western docs to spiritual healers. We're open.

Oh so what's Heavy Feet you ask? The music reference in the title is a great song on the new Local Natives album called Hummingbird. I just saw them again at Governors Ball on Randall's Island. They're just such a good live band with tight harmonies.

*Mary is our new Speech Therapist because Debbie moved on to a new job. We'll miss you Debbie, but we will absolutely keep in touch!

Wednesday, May 15, 2013

Ready to Start.. The New Regimen

We got the results from Wanda, the Naturopath I mentioned two posts ago. Just to refresh, Wanda did a saliva DNA test to find out what's going on inside that little body. She found....drumroll please... diphtheria and graphites and a deficiency of iron and nitrogen.

Let's start with Diphtheria. The DTaP vaccine that babies get at 2 months, 4 months, and 6 months stands for: D - Diphtheria, T - Tetanus, and P - Pertussis. To be clear, Josie doesn't have the actual illness, but a significant amount of the Diphtheria toxin was found in her body. I'm just wondering how a baby gets the very bacteria that she was vaccinated three times to prevent? I'm trying to wrap my brain around this one. I'm doing research on the disease and the controversy around this specific vaccine. I won't bring my findings here as my focus and energy now is just to rid Josie of the toxin. And that's Phase One of Wanda's regimen.

Wanda also found graphites aka lead. I asked why Josie's blood test for lead, months ago, came back normal and the answer is that what doctors deem "normal" in babies doesn't mean there's absolutely no lead in her. There is. And Phase Two of the regimen will include a homeopathic remedy to remove it. We're also starting calcium since lead disrupts the absorption of calcium.

As for the iron and nitrogen deficiencies, we're adding foods that are rich in both to her diet. Since we recently stopped the diet Dr. Palevsky recommended, we've already been adding such foods, like bananas and almond milk, so hopefully she's already improving her iron and nitrogen levels. As I'm writing this, I'm realizing that iron can disrupt the absorption of calcium. Hmmm, I'll have to ask Wanda if increasing her iron will affect the calcium supplements.

So Phase One starts tomorrow and it includes:
- 2 bottles of the homeopathic remedy Diphtheria. Note: homeopathic remedy names are often the names of the toxin it detoxes.
- A calcium supplement called kid-e-calc
- A supplement called kid-e-trac - for overall brain and central nervous system health (yes please).

Phase Two starts when the 2 bottles of Diphtheria are finished. I'll write about that plan when we get there.

Anyway, I've been making Josie's almond milk every day. It's easy to make, delicious, and 100% organic.

I'm very encouraged to start this regimen. We may actually know now why Josie's central nervous system and digestive system are unable to function properly and we can start the process to eliminate the culprits.

On a side note, Josie spoke today!! I'm not kidding. She didn't say actual words, but she spoke a string of 2 or 3 jumbled words and I heard her little baby voice for the first time! Yes, we hear her yell often - happy, frustrated, angry, and all sorts of yells, but this was different. It was her voice. It was so so so cute. And she looked me straight in the eye when she spoke.

**Music reference: Ready to Start is one of my favorite Arcade Fire songs. It's a long survivor (at least 6 months) in my RUN playlist and I'm not even remotely tired of it. Arcade Fire is one of those bands I never hear anyone say they don't like.

Here's Josie laughing in her crib today.








Wednesday, May 8, 2013

I See You... in Pittsburg

We took another road trip this week - to Steelers Country. As if I care about football. I don't, but that's a shout out to Uncle Peter.

So we went to see Dr. Christine Roman-Lantzy, who is one of the few experts in Cortical Vision Impairment (CVI). She actually wrote the book. I made this appointment in September so needless to say, I was very excited to finally meet her.

Josie was diagnosed with CVI at around 9 months. It's actually amazing to me that the first opthamalogist we went to did tell me it's her brain and not her "vision" (the structure of her eyes are fine), but she never told me about CVI. The second opthamologist handed me a one-pager with the definition of CVI, but never discussed the importance of tackling it immediately with CVI-specific vision therapy. The next two eye doctors had nothing CVI-specific to tell me either. The fact is that a child with CVI has a great chance of overcoming most of the challenges if they engage in the correct methods of vision therapy early on. CVI happens when the vision center in the brain is injured and the eyes and brian are not communicating properly. Here is a great description of CVI: http://www.littlebearsees.org/what-is-cvi/

Dr. Roman did Josie's CVI assessment to see where she falls on the CVI scale. We were all happy to learn that she's at a level 5 (1 is the worst and 10 is normal vision). She also reported that Josie is in phase 2 of the 3 phases of CVI - She's advanced through phase 1 (little fighter). I explained that when we finally got our vision therapist, Joanne, I told her that we can't treat Josie as a "low vision" case and we have to follow the guidelines of CVI therapy. Joanne immediately got Dr. Roman's book and did just that. It's made a huge difference already. Dr. Roman gave me props for that call :). Her husband who is an MD and was present for our appointment actually asked if I'm a Dr. after I explained Josie's story. That was nice to hear; this has been quite the education!

Dr. Roman reiterated a lot of what we already learned from her book and she gave us a ton of great information for continued therapy. She demonstrated what Josie can and cannot see and from what angels and distances. She reinforced what to use as therapy to help stimulate the vision center of her brain. This is the key: humans have brain plasticity and the younger you are, the more brain plasticity you have. So the more we work to USE the area of her brain that has been injured, the more likely we are to help repair it.

A few examples of what helps stimulate Josie's brain:
- bright colored objects against a solid background
- Shiny objects, with movement and/or lights against a solid background
When she put a gold beaded necklace on a patterned tablecloth, Josie couldn't find the necklace, but when she put that same shiny bright gold beaded necklace on a black felt board, Josie looked at it and reached for it.

There's a lot more to CVI - things like visual latency and complexity to name a few. The goal is that we work on each area and in time, Josie's CVI score will move closer to a 10. We'll see Dr. Roman again in one year.

I felt really good after this appointment. One reason is that Dr. Roman pointed out how impressed she was by "Josie's will." She said it's so clear, and not so common to see, how much Josie wants to engage in activity. And she is engaging. I also felt good because I feel that this is something we have under control. We know what Josie is dealing with; we know how to treat it; it makes sense; we are working with the best; we're seeing the therapy make a difference; we know that with therapy she has a great chance of getting much better; and I am certain she has the will.

**Music reference: "I See You" is a track off the new self-titled Caveman album. I love this album and the band and I'm actually going to see them at an album release party in Williamsburg tomorrow night!


Lil Jojo following the light with Dr. Christine Roman-Lantzy


We are super serious about this light box activity.


Bad picture, I know. The point: When we left Dr. Hao in New Mexico the song "Josie" came on and when we left Dr. Roman in Pittsburg, the song "Jojo" came on. Now is it getting weird?
Ok so you caught Miss indie-head listening to good ol' American classic music. We just get in the mood to hear artists like Van Morrison and Jackson Browne on road trips.


But not for too long.. I kept hoping to hear this new song by Vampire Weekend. I really like it. Just thought I'd share that.

Thursday, April 25, 2013

So much to say.. So much to say

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 been doing Cranio with Dr. Sherr for a while already and I wasn't sure if it was yielding any real results for Jojo. Her explanation of Jodie's therapy sounded very different so I called Jodie as soon as I got home. She was instantly nurturing on the phone.

I started telling Jodie everything we've been doing and this is where the conversation led me to other moms to speak to.
I mentioned that I just ordered the book from the founder of the Institute of Achievement of Human Potential called 'What to do about your Brain Injured Child." Dr. Palevsky had recommended that we look into going to a 5 day course at this institute eventually. I got the info about the course and the statistics of results seemed promising. I was a bit fascinated by the book and the therapy concept called Patterning. The idea of it made sense to me - you use specific movements on the child based on where she has hit a roadblock in a development. The movements are supposed to trigger the area of the brain that is not developing to start working properly. So I started asking our therapists at home to do the movements on Josie with me. Anyway, as soon as I mentioned this to Jodie she asked me to please hold off on doing Patterning until I speak with Amanda, a mom of a boy named James that she sees.

Amanda and I spent at least an hour on the phone. She went to the *institute and when she came home and did the Patterning with her son he completely shut down. It was traumatic for him. We both agree this obviously does not mean Patterning is bad. In fact, it seems to be very successful for many children, but all I need is one story where it had a harmful impact and I'm sure as hell not doing it with Josie. James was about 16 months at this time. Since birth he had a very hard time gaining weight (much like Josie). He even had a tube to receive food for a while. Before Patterning all he could do was sit up (which is more than Josie). He couldn't roll over though. After Patterning, he wouldn't move. Soon after, Amanda spoke with a woman named Rachel who has an incredible story and whom got her to work with a Naturopath named Wanda.

You still with me? We have Jodie, Amanda, Rachel,and Wanda. Amanda told me Rachel's story of how she basically cured her son of autism once she met Wanda. I know any Western doctor would laugh at that and say something like, "no she didn't" or "maybe he never really had it." But, I spoke to Rachel and her story is quite real. Wanda tests people for toxins in their body. She uses a cotton swab to get saliva from the inside of the person's cheek and tests it. For James, Wanda found high levels of toxins in his body. I forgot exactly which toxins. She then put him on a regimen of supplements to detox him. He is now 2 years old; he is crawling and he is fat.

Rachel's story is similar. Her son became autistic at I think she said between 2-4 years old. He completely turned after a flu shot. She met Wanda, did a test and found he had incredibly high levels of candidia (fungus) in his gut as well as many other toxins. He went on a regimen to detox. Rachel said he would always just walk in circles on the driveway, every day the same pattern and one day he broke the cycle and crossed the street. It was the start of his autistic pattern falling apart. He is now 9 years old and he is just one year behind in school - a regular school - treated as a regular student. She says she remembers so clearly when he returned to her.

So Wanda has Josie's cotton swab. Help me Wanda, help help help me Wanda. I couldn't resist.

Through my conversations and research I'm starting to understand that of course, it's not that vaccines directly cause autism or developmental delays, but what seems to be a prevalent occurrence is that if a baby is compromised already, either by toxins or by a degree of oxygen depravation from trauma at birth or in utero, his/her body and brain might not be able to tolerate the toxins that are in the vaccines. I've been told by more than one alternative professional that it's possible Josie underwent some trauma while in utero where her oxygen supply was impacted. So maybe while depleted of the proper oxygen levels, the toxins in the vaccines mixed with the chemicals in her body and caused injury to her brain. Do we know for sure this is what happened? Of course not.

Needless to say, I'm eager for Wanda's results (should be 2 weeks) and I'm eager to start what will be a "slow, gentle, detoxification."

I mentioned there was also a man I spoke with. That is Matt; he's in Italy. He is also part of Amanda's and Rachel's team. Unfortunately, I don't have to make a trip to Italy any time soon because he can do his work over the phone. I will save his angle for another post.

And on the Western front, this week I saw Dr. Maytal, Josie's Neurologist and Dr. Wilkens, our Pediatrician as well. I will save this for another post too. I'm tired.

But before I go I will add, Josie is showing us something. She might not be reaching milestones or gaining weight yet, but she is more present. Her eyes are a lot better and if it is even possible, she manages to get cuter every day.





*Amanda actually attended a course at a different institute that also teaches patterning. Dr. Palevsky had given me the names of both.





Saturday, March 30, 2013

Go to the ends of the Earth for you..

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 decided we'll get a snow globe in each state; he thought that was cool.

So off we went. Dr. Hao has an office in both Albuquerque and Santa Fe. We booked two appointments in each city during our stay in NM, which is what he recommended. The first day, he placed four needles in Josie's head. Tanner couldn't watch and Josie wasn't happy. We had her trying to take some steps while we held her and she did actually take some steps. This was encouraging, and although she has taken steps while being held before, she seemed to be bearing more weight on her legs and pushing them up by herself. After about 30 minutes, he took out the needles. We weren't sure if an actual miracle occurred in that treatment, but we had 3 more to go.

Dr. Hao said usually, patients do show some response after one treatment, but she might need more before she responds.



I asked him what he thinks is wrong with her and he said "it's no question it's brain damage". He concurs with Dr. Palevsky that if there was any lack of oxygen to her brain either in utero or sometime shortly after, it could cause brain damage that could not be detected on an MRI. He said if the nerves in her brain are not connecting, it will affect everything we're seeing: her eyes, her coordination, her ability to gain weight, her muscle tone.

In between treatments we enjoyed a New Mexican gastronomic tour, beautiful desert mountain views, seeing old churches, driving 15 miles up to the peak of the Santa Fe mountain, and some stargazing. And despite all the culture and the trip to the Albuquerque Zoo, Tanner's favorite part was when we went to Target and he got some new toys. True story.




Visit #2 in Santa Fe: Dr. Hao added two more needles to what he said was for her eyes. We didn't see any changes from this treatment.

Treatment #3: Dr. Hao introduced us to another Chinese Dr. he works with whom he is discussing Josie's case with. Again, he placed 6 needles on Josie's scalp. We didn't notice anything after.

Visit #4: the final visit, the other Dr. showed me how to give Josie an acupressure massage to help ignite the nerves along her spine and recommends I do it every day twice a day. Will do. Dr. Hao used 6 needles again and again we didn't really see a difference. His thoughts are that it could still happen, the treatments could be accumulative and we might see subtle improvements. And if we do see improvements he recommends we come back in 3 months. He said if we really don't see anything, then she's just not responding to it and we should move on.

We won't say nothing happened. Her trunk seems a little stronger; she is pulling her upper body forward when leaning back, which is something new. He also saw that her pupils started being less dilated by the 4th treatment, which indicates her brain is connecting with her eyes. Before, her eyes would stay dilated, which probably has something to do with her light sensitivity.

So the hope is that we'll start to see Josie connecting more over the next week or so. We talked about it being "a light switch that just needs to be turned on." While I was hoping to come home from NM with the switch flipped up, maybe it's actually a dimmer and these treatments helped inch that dimmer up a notch. She wants to do everything a 16 month old should be doing so badly. I know that for sure. She wants to crawl, she wants to sit up and play, and she really wants to talk!

Our motto is "every little bit helps."

*And like Bob Dylan's song, (the music reference in the title) There is nothing that I wouldn't do, to make you feel my love.


Me and Tanner all cozy by the fireplace on the patio of our hotel room. We loved the Four Seasons in Santa Fe!


This came on the radio when we left the first appointment. Coincidence?? Well, probably :)


Jojo never looks "disconnected" when looking at her daddy.

Monday, March 11, 2013

We are the People

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 her Vision Therapy went up to twice a week for an hour.
In addition, I will continue to bring her to Amy at Keep Moving Forward about 2 or 3 X a week for intense Physical Therapy with the amazing equipment they have.

We are truly lucky to have been given the team we have. They are all impressively knowledgeable and they all show me how much they care about Jojo. The most key member of the team of course, is our Janice. Our amazing nanny who had no idea how different a nannying job this would be, and has just become part of our family and like another mom to Josie and to Tanner.

Before I show off our team, there is a music reference in the title: 'We are the People' is one of my favorite songs (especially to run to). It's by Empire of the Sun, an Australian electro-pop band that has only put out one (great) album to date called 'Walking on a Dream' in 2008. They're finally releasing a new album in June. I can't wait to see if they've got more gems like "We are The People' up their sleeve.


The team:
This is Joanne, Josie's Vision Therapist, using the light box with Josie. Josie has something called Cortical Vision Impairment (CVI), which is a specific vision disorder that is different than just low vision. Joanne has educated herself in CVI specifically to work with Josie. She is helping us understand how and what Josie sees so that together we can help her overcome it.



This is Jan, Josie's Special Educator, using Josie's favorite giggle stick! The noise cracks her up. Jan helps Josie with her sensory skills - Jojo loves Jan's entire bag of toys and all her fun songs. "These are my hands, touch and see... These are my hands touch and see" We sing it all day!


This is Michelle, Josie's PT. Michelle is helping Josie get stronger every time she visits. They do a whole lot of weight bearing together! Look how happy Josie is when she's standing. Michelle gives Josie so many kisses - she sure knows how to get her to smile.


This is Josie's OT Stacy. She's ready to have another little one of her own! Stacy is one of Josie's biggest cheerleaders! Especially when they're practicing rolling.



Debbie (who is camera shy) is Jojo's speech therapist and she also helps her with feeding skills. Josie loves having someone to dine with on a regular basis and she's definitely getting the eating thing down. I mean, with an Italian dad, she better get it!

Here's Amy again. There's a post below all about Keep Moving Forward. Amy is an incredibly positive force for so many people. Josie works out hard with Amy and grunts like a 250 pound man lifting 250 pounds - well, not really.


And last but certainly not least, this is Janice, Josie's other mommy. Janice just eats Josie up all day every day - her little "shweetie boo boo." We struck gold finding Janice, she holds my life together! I wanted to start a blog about nanny hunting while we were on the hunt. The different people I interviewed were blog-worthy. It was insane. I knew I wouldn't settle for someone who was just ok - not with my kids. The perseverance sure paid off.
This is Janice on her birthday in Montauk!


Thursday, February 21, 2013

Free Energy

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 much as I say I don't worry, he knows I do. He worked on me for an hour, talking as a therapist /spiritual healer and massaging the negative energy out of my body. My stomach was sore for 2 days after and I can't explain it, but I just seem to be going through my days a lot lighter. Jojo and I will absolutely see him again.

Music reference: There are two. Free Energy is an indie pop band that I really like. I don't know if anyone else knows who they are, but I've had their song Dark Trance on my running mix for a while now and I'm still into it. And reference #2 - **Who knows, who cares is an amazing song by one of my favorite bands right now, Local Natives. I just saw them for the second time and they are just so good. I highly recommend listening to both their albums on repeat.

Here's Josie and Tanner just being so cuddly and cute as always. Tanner loves his baby so much - can you tell?!

Friday, February 15, 2013

The Weight

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 on an Ayurvedic diet to energize her body. His thinking is to add protein-rich energizing foods right at the beginning of the day - "fire up her system". We've been doing that and I was sure she was gaining weight, and was pretty surprised to see she actually lost weight. I'm reading other stories online of babies who didn't gain weight for an extended period of time, but most are related to the baby starting to crawl and moving a lot, so that doesn't apply.

On a positive note, her head circumference is growing! Exhale.

Music reference: "The Weight" hardly needs explanation. It's been called one of the greatest rock and roll songs of all time by Rolling Stone and others. The classic song by the folk rock band called The Band (how did they get away with that?) including Robbie Robertson and the late great Levon Helm, might be one of the most covered songs out there. Here's the soulful Mavis Staples live in concert singing The Weight And here's a documentary about the making of The Band's self-titled classic album the song appears on.

Saturday, February 9, 2013

Foxygen update

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.