Josie's Journey

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.

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

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 s

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

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

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 ti

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

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 gaine

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%. Su

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 wh

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 corre

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.