Thank you Danny Roberts, 
for your 
generous donation!

Summer 2011

Here is Leaf and his Grandpa Ray mowing the fields together - Leaf had such a good time!

As for other exciting activities in Leaf's life - he has truly enjoyed his friends and teachers at Park Elementary these last few months. We are deeply grateful to everyone who has put in effort to make sure he's had a fun and safe experience in school.

Leaf was able to identify different colored toys for me while we worked on the light box at school recently - and with the help of his therapists he is becoming more mobile and communicating through symbols and actions.

Though Leaf is doing well in many ways, he still is struggling to speak. He clearly understands verbal communication, but isn't able to say any words. So, it may be time for more stem cell extracts to help him further develop, and hopefully find the ability to speak. The last segment of the fund raising money went toward the extracts and helped him learn to walk - it has been priceless for him to have this ability. He still has more limitations than the average three year old, but he relishes mobility and movement he has gained and works on improving it more and more. Saying even a few words would make him so proud!

We are forever grateful to everyone who has helped along the way - we know Leaf wouldn't have nearly the quality of life he does now without so much love and support from all of you!

Thank You!

Run for Leaf II: St. George Marathon 2010

Chantel Smith, and Darby Bailey will be running for Leaf this year! Last year's marathon donations contributed to stem cell therapies that both helped Leaf's vision improve and made it possible for him to walk. Leaf's muscles were too weak to support him and it was very frustrating for him because he wanted to walk so badly. He had gotten to the point where he was afraid of falling and had given up trying. After his Swiss stem cell therapy his confidence was restored as well as his strength. He quickly was able to walk confidently and we are now working on maneuvering stairs, jumping on a trampoline and running with guidance. Heartfelt thanks too everyone who donated, you truly made an enormous change in our little one's life!

Leaf's vision therapists have all verbally noted improvement in his ability to use his eyes this year. New eye test results show that indeed the light reaching his visual cortex has increased from last year. When I asked the technician how his test compared to an average child Leaf's age, he said the amount of light getting through was about half of what a average child might see. So, we've gone from zero light perception to one half the average light perception in less than three years. And, we still have plenty of time to continue working on increasing his vision and abilities.

Before his trip to China in 2008, Leaf's original diagnosis said that his vision was less than 20/640, extremely low/no vision. In 2009 his test showed that light was entering his visual cortex and his vision was estimated to be around 20/200, well over a 400 point improvement in one year! This new light test shows without a doubt he can see even better this year. We still need to have his optic nerves re-examined and get a new estimate on his current visual acuity, but we know for sure it's better than 20/640!

Thank you, thank you, thank you to everyone who has helped us find methods and means to give Leaf the opportunity to have vision, walk and be a happier, healthier, more active little boy. And thank you Chantel, and Darby for your Run for Leaf!!!

RUN FOR LEAF!

Our wonderful friend and cousin Chantel Smith is going to run her first full length marathon on Sept 19, 2009 in Logan UT. She has decided to "Run for Leaf" in light of creating a second opportunity for Leaf to obtain overseas medical treatment to augment his vision. Please visit her blog at www.chantillys.blogspot.com and read all about the path that brought her to this incredible goal. Chantel has always been extremely supportive of our family but especially supportive of Leaf - She is a shining light in our lives. When you see Leaf and Chantel together you can sense her sincere love for him and their beautiful bond. It has been a treat to talk with Chantel during her training - it has truly been life altering an awe inspiring.

GO CHANTEL!!! - BEST OF LUCK IN YOUR RUN!

Lunar New Year

Make a Smilebox slideshow

Leaf enjoying a busy-box

Last day at the Xiaoshan Hospital

Judy, Catherine, Casey, Nancy, and Sophie

Linda: Leaf's physical therapist, spent many hours working with him to better walk, stand and move - as well she did many sessions of a type of acupuncture that uses electricity rather than needles

last check-up

Dr. Mike, the head doctor (and his team) holding Leaf after his final check-up.  

Leaf and Sophie really bonded - Sophie always made sure to take time with him and let him practice walking up and down the hallways.  Leaf loved Sophie playing with him and laughed hysterically; it echoed all through the corridors. 

Here is Leaf hugging Johnny goodbye. Johnny is one of the fantastic interpreters there on the 20th floor. Knowing Leaf he is probably clutching onto Johnny pretty tight - thus the great face!

Driving with Jack

This was one of my favorite neighborhoods to drive through.  It is a little community built on a canal which enables the residents to bring in  many goods to their stores on gondolas.  Most  people who live here run a little business out of the garages that line the street.  I would have liked to spend more time in this neighborhood.  I found it very interesting.  

Jack was one of the hospital drivers who was responsible for helping the westerners who didn't speak Chinese get around and not get lost.  All the hospital drivers; Jack, Sam and Tom were very kind and to us. 

Back in Durango

Hello to everyone!  The travel back home was pretty hard on Leaf.  He caught a flu on the airplane and dropped quite a bit of weight (we've been very worried about him). However, now that he's recovering, his stomach and digestive issues seem to be better than before.  (Those little stem cells are sneaky, I'm never sure what they are up too.)  

The last few days Leaf has been extremely verbal - he's trying to imitate more and more sounds.  He especially likes the rooster crow sound on the new Christmas toy he received from grand-mommy Joyce. He has never been a silent kid, but the stem cells seemed to jump start him into trying out more sounds.  Leaf is VERY happy to be going to his little preschool again.  He had a fantastic day yesterday.  The report from his teachers was that he was laughing and talkative all day.  A few days ago in the doctor's waiting room I was holding Leaf close in my arms.  I noticed for the first time that he was watching my mouth.  So naturally, I slowly mouthed all of the little sounds babies make while he continued to watch.  It was fun for me to know that he could see that. 

Leaf is still fairly shy to use his vision - he didn't like using his light box when we first got home. He rubbed his eyes and acted like it was overly bright, but he is adjusting.  The vision therapist said that he is visually attending more quickly and more often. She was excited to hear that Leaf was clapping and that he could look at his hands.  She knew that before our trip to China that he wasn't able to see his hands.  

Just now I set one of the Christmas  toys out on the floor for Leaf to play with, but I set it out of reach.  It's the first time I've seen him know exactly where to go to find the toy at such a distance - he simply rolled over a couple of times until he could reach it.  It was far enough away I felt that he found it with his auditory sense, even though, I was surprised and happy to see this. He usually will not leave a sitting position to find toys - he will simply feel around where it is easy to grasp things hoping the toy will be there.  Leaf's physical therapist told me several months ago that low vision kids tend to be "sitters" meaning they aren't very mobile - but I have a feeling we are in the beginnings of beating these odds.  

Today I'll be working on posting some photos of the doctors, nurses and interpreters from the hospital.  The Chinese are such wonderful people - they are very warm and caring.  I don't mean to send a negative light by exhibiting images of all the exotic foods they eat.  I actually like eel, but I don't know how to prepare it myself, and the French have always enjoyed eating frogs, so that perhaps isn't as unusual.  I found Hangzhou to be an amazing spectacle of humanity. Though we experienced our fair share of culture shock - the Chinese culture in my eyes is truly lavish and beautiful.   

The photo above is Leaf preforming his famous protest raspberries.  

Here is a photo of Leaf enjoying the grounds around the Lingyin Temple in Hangzhou.  He looks to be contemplating his time in China and all of the vision, good health and wonderful people it has delivered to him. I know that I have been contemplating the same.  There are many stories and pictures to share with you all.  But first, here is a little announcement about his progress. I've made a list of  things that Leaf is doing by himself that he didn't or could not do before China. 

Crawling

Jumping

Sitting up

Sitting down 

Watching Television (grabbing at the images and getting excited from the colors and fun)

Better eye contact

Clapping his own hands for Patty Cake (clapping is visually learned)

Wishing you all a wonderful holidays - and our many thanks to all of you for sharing the gift of sight with Leaf.  We could have never accomplished what we have without all of your love, support, encouragement and prayers.   We are full of gratitude, awe and joy.

Much love, Johnny and Stephanie

Even if I knew how to prepare a little something that calls for eel, exactly how do I get these guys home?

Supermarket Frogs

Dried fish and shrimp

We don't get out of the hospital much, but I'm beginning to think that there isn't anywhere more cultural and curious that the supermarket???

Peking Duck

I wanted everyone to see this image of Leaf with his nice steady eyes.  In Leaf's pre-China photos, his eyes are off to one side, closed, or crooked.  Here, though he's not looking straight into the camera, you can see how much more steady they are.  New little hints of better vision have been revealing themselves still.  

One of the nurses held up a large bright Christmas bow about 10 or 12 inches from his face.  He saw it immediately and rubbed his eyes like he was trying to wipe the red away - I think it was so bright that he didn't understand what it was doing there.  He would look away for a second and again try to see what was in front of him, but that big red object was still there!  So he rubbed his eyes again not completely sure why he was seeing all that saturate color.  This continued for a few minutes until the nurse put the bow down.  

Leaf usually doesn't turn his head to look because he doesn't see around him.  He will usually only look to the side because we ask him to; with a lot of therapy and coaxing we work to get him to "look with his eyes".  We've been noticing now that he's experiencing more spontaneous head movement.  A doctor will walk in with a bright white coat on and Leaf's eyes and head move to look at the coat while she approaches.  He's not quite sure why his head and eyes are doing this, so he fights it a little and tries to go back to looking into nothingness.  He can't help it though, and his head jerks back to the white coat for a few more seconds.  In the same way he's starting to be more aware of people's faces and will turn to look at them when they move in close.  

As a rudimentary vision test, I've been checking Leaf's pupils every day or every other day.  At first his nystagmus was looking better but his pupils remained open when I shined the pen light on them.   At home, if we set Leaf in a sunny window, it will take about three minutes for his pupils to change to the appropriate size.  Now it seems, that even though they don't react as fast as someone with normal vision, the time it takes for them to move from big open pupils to tiny tight pupils is reducing.  Our last two counts were 15 seconds, 2 days later, 10 seconds - much better time than three minutes.  I've read of children going home with normal pupil response.  I still have hope that the next two sessions of stem cells will bring him even closer to this possibility.

Leaf has a bad cold right now -  unfortunately that means we can't get injections 5 and 6 until he is feeling well.  We are working hard to get him healthy so he can have more cells.  I think he'll come home with a few nice improvements, but we expect even more over the next few months as all of the cells grow and develop.  Many children end up with more blood vessels around the optic nerve - as well, the atrophied nerves becomes more pink.  We'll continue to keep tabs on his endocrine system too.  

Much love and thanks, Stephanie and Johnny 

 

Ray and Rita are on their way home to Salt Lake City.  

We are going to miss them so much!  

The other parents and patients were very impressed that they were so outgoing as to come help out and spend lots of time online sending many update emails to friends and family.

We are too, Leaf will miss their fun and comfort.

Thanks Mom and Dad!