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!