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!

Today is procedure #4.  Leaf has been very strong the last few days.  The last treatment went very well.  We had almost given up on Leaf learning how to crawl - he likes to stand so we thought we'd just go for walking.  But since we've been here he's been pushing up onto his hands and knees without help.  His digesting issues are improving.  He hasn't been gagging and vomiting (his average is 3 to 4 times a day) since the very first injection - His nystagmus is better as well.  He holds he eyes more open and will try to look for people more than before. He was very sensitive to light after his second treatment and did not want to look in the mirror or at his bright toys - but now, he is again enjoying the eye exercises and play we do with him each day.  

Leaf made it through an entire doctor (team) visit today without getting upset. I just hope he doesn't always associate the Chinese language with hospitals and needles.  It is an amazing experience being here.   My parents took this great picture of Leaf sleeping on his little rice pillow.  

I chose to build these images with green hues due to the Chinese peoples' adoration of jade.

We had such a rough start over here - Leaf had a blood sugar crash accompanied by a seizure the first night in the hospital.  I found it very difficult to communicate with the doctor and nurse on night duty, even after we woke the interpreter at 3 am to come to the hospital.  I was more than a little shaken up.  I believe I am finally recovering from that extreme medical cultural shock.  After that, I wasn't so sure we could truly keep Leaf safe with all his endocrine issues while being so far away from home, our cozy western medicine, and Leaf's pediatrician who's been with him from day one.   Since then however, they've been striving each day to help us be at ease and keep a watchful eye on Leaf.  The interpreters often stay the night in the hospital as well.  

I have learned a lot about how the Hangzhou people handle projects.  Getting accustom to how people work in large teams has been a little bit of a challenge.  Half of our rough start was that I am so green to the East.  You'd think that working in teams would be natural and not much different than a US hospital staff working together - but really it's quite different.  Rather than getting a doctor visit - the entire doctor line up may come into the hospital room all at once, along with nurses and interpreters too.  Or rather than having one attending nurse, we'll have three, six hands working on the same IV or bandages.  Leaf gets very afraid when there are too many voices around - he feels he's going to get poked (most of the time he is right) so we have to work to keep the noise down.  Sometimes it is very reassuring to have so many helping hands, and sometimes it's chaos.  But, because of Beike's good care, we are seeing some amazing things both in Leaf's well being, and in many other patients here.  We've seen people regaining use of limbs, clenched hands of cerebral palsy relaxing, nerve pain from a spinal cord injury subsiding.  It's all quite beautiful.  There is a Chinese boy here with the same condition as Leaf who has gained some vision as well - he fortunately lives here and is on his second set of treatments.  Leaf is full of energy today; accomplishing physical feats we've never seen him do.  No doubt he is improving.  

The Chinese doctors, nurses and therapists are warm and wonderful people who very much want everyone here to gain health and happiness.  There are people here from all over the globe.  UK, Romania, US, I've seen photos of families from Hungary and of course there are Chinese patients as well. We feel lucky to be among them.    

Chinese Hospital 101                                                                                   12/01/08

 

Today Baxter, myself and one of the interpreters waited just outside the surgery quarters in a quiet corridor for Leaf to wake up from his anestheisa.  We got to see a newborn carried out to some double doors that emptied into a very crowded and bustling hallway, his father stepped inside the quiet room for a moment, seeing his child for the first time.  The baby's fingers were frail and wrinkled; he was so fresh to this life that his black hair was still wet and covered in white paste.  Shortly after this, we witnessed a surgeon walk to those same double doors with a small amount of human tissue in a clear plastic bag.  He showed the tissues to the family members who had been anxiously waiting - a conversation ensued between the doctor and the family that we couldn't understand.  Then, the surgeon removed the tissue from the bag and cut it open.  Inside were three stones, or perhaps tumors that he had cut out of his patient.  He cut the three spheres of diseased matter away from the surrounding flesh and gave them to the family.  Afterward the interpreter told us that the family was celebrating because the illness had been removed from their loved one.   

Leaf's third stem cell treatment is now complete I think we've got the right treatment routine to suit him now.  The second treatment was traumatic - they don't really like to give much pain medicine here.  This time they gave him gereral anesthesia and kept both Leaf and myself much more calm.  Still, for someone so small to go without food for 6 hours before the treatment, and then have to stay flat on his back for 6 hours after his treatment - I felt we were asking a lot from a little guy!  Grandma Rita and Grandpa Ray are a giant help under these circumstances.  They dutifully kept him comfortable and in good spirits.  Grandma Joyce back home in Durango is also working hard to take care of Erin and Michaela.  We couldn't be here for Leaf without knowing the girls are in good hands.  We are hoping that after Joyce's enormous contribution  - she and Leaf can finally spend some quality time together. 

More tomorrow - Stephanie

THANK YOU HACKENSAW BOYS!!!

(click on their name to be directed to their web page - find out where and when they play next.)

The night before Thanksgiving The Hackensaw Boys performed in Falls Church VA.  They asked everyone who came to donate to Leaf's stem cell procedure costs.   It was a great success!!!

Thank you to these talented musicians and the generous crowd who donated during the show.  

Leaf loving his dad

Hello to everyone back home in the US and around the globe!

Leaf is having a fantastic day today. Yesterday was his second stem cell procedure. He was happily playing all night afterward. The procedure itself was a bit rough on him - he's difficult to get to sleep, with medications or otherwise. I do think that the stem cells are already helping his vision. There have been little signs of improvement the last few days. When he is nice and rested, his visual reaction time is very quick and he is noticing things that have more subtle color. I've caught him trying to look at his dad's face out of the corner of his eyes several times too. We are still in the very beginning stages of the treatment, so these new steps hold substantial encouragement for us.

The doctors here believe that the stem cells will also improve Leaf's endocrine situation. Some of the other children who have received this treatment have been able to reduce their medicines after time.

So today, we are extraordinarily thankful for every single person who has helped Leaf to this stage in his unique journey. We are thinking of you all - For those of you in the US, I am imagining your beautiful tables with autumn colors, candles and lovely food, your voices and laughter too.

Wishing we could be with you.

All our love, Stephanie and Johnny

Article on Leaf in the Durango Herald

Durangoans turn to stem cells to cure 1-year-old's blindness
by John Peel
Article Last Updated; Monday, November 17, 2008

This is how Leaf Baxter celebrated his first birthday earlier this month:He was in St. Louis undergoing a test to determine how good (bad, really) his sight is.
But that was just a short trip for the Durango boy who was born virtually blind Nov. 3, 2007. Right now, he and his mother, Stephanie Smith, are on their way to China, seeking a remedy from umbilical stem cells.

Photo by JERRY McBRIDE/Herald photos
Stephanie Smith plays with her 1-year-old son, Leaf Baxter, on Tuesday in their Durango home. They left Sunday for China, where Leaf will be given umbilical stem cells.


When the odds are long, sometimes you go a long way to push them in your favor.
Leaf has faced long odds from the get-go. His mother's labor was rough; Leaf was delivered by C-section, and 12 hours later he stopped breathing and turned purple. He was quickly flown to Denver Children's Hospital, where he spent four days in intensive care before doctors determined the root of his problem.
Leaf has a condition called hypopituitarism - an underactive pituitary gland, resulting in hormone deficiencies. To compensate, he gets several medications - cortisol (to cope with stress), levothyroxine (for his thyroid) and a growth hormone.
A consequence of hypopituitarism is another condition, not so easily treated, called optic nerve hypoplasia. This means his optic nerves are not hooked up correctly. Tests show his eyes work, however, the optic nerves aren't adequately delivering signals to the brain. He does react to light, but the picture he sees is fuzzy at best. The test earlier this month in St. Louis revealed his vision acuity is so poor it is nonrecordable.
Smith and her husband, Durango attorney John Baxter, figured they could handle the hormone problem. As with diabetes, if you have the right medications, you can live a fairly normal life.
But blindness was something else.
"That was the hardest part for us," Smith said Tuesday in her Durango home. "That was really hard for me to accept, and I guess I haven't accepted it. I'm just trying to move forward and improve his vision the best I can."
Leaf has been to Johns Hopkins in Baltimore, to doctors in St. Louis and Denver and Durango. They've all told Smith and Baxter that nothing could be done to help his vision.
His lack of sight has affected his development. He doesn't crawl, although he likes to stand with the help of an adult finger or two and appears nearly ready to take a few steps.
Leaf played nearby on the floor with small toys. His hearing is extra sensitive, Smith said, helping to compensate for his lack of sight. One of his favorite toys is a tiny plastic saxophone that plays and lights up at the touch of a button. When he fussed, Smith clicked a couple buttons on a laptop to play music and soothe him.
Leaf is not a stranger to doctors' offices - "he gets poked and prodded" a lot, Smith said - and he's about to endure a month in a foreign hospital. Stem-cell therapy is at the same time promising and controversial. The United States currently bans research involving embryonic stem cells.
Meanwhile, China has begun offering therapies using umbilical and adult stem cells to help various conditions, including the rare optic nerve hypoplasia. Smith said she is in touch with parents whose children's eyesight has improved after stem-cell and physical therapies performed in China. The procedure is not approved in the United States.
"Lots of people tried to discourage us, just because it's a big unknown," Smith said.
Soon after Leaf's birth, Smith discovered on a European-based Web page information about the umbilical stem-cell treatments in China. Beike Biotechnology, a Chinese company, is in the forefront in this field, and Smith contacted Beike through a liaison in Chicago. After jumping through countless hoops - doctors' visits, paperwork, etc. - she was able to schedule Leaf for a one-month treatment at a hospital in Hangzhou, a city of 6.5 million on the East China Sea near Shanghai. She and Leaf likely won't be the only Americans there for treatment.
They left Durango on Sunday, and their stay is from Nov. 20 to Dec. 20. She'll sleep on a cot in Leaf's room. Over the course of six spinal injections, Leaf will receive 60 million umbilical stem cells.
Theoretically, the stem cells - taken from the umbilical cords of healthy Chinese babies - will find their way to the optic nerves and regenerate them. Next, Leaf's brain will have to learn to process the images from his eyes.
"We definitely have our moments of, 'Oh my goodness, I hope we're doing the right thing.' But every time that little bit of doubt shows up, I'm reassured by something," Smith said.
For instance, she and her husband have been impressed by people's generosity.
"After you start getting the word out, people come out of the woodwork to help," Smith said.
Their campaign to raise $60,000 to pay for the trip and the treatment got a boost recently when Chicago Cubs pitcher Ryan Dempster and his wife, Jenny, donated $5,000 to the cause. The Dempsters are complete strangers.
Progress is hoped for within a month or two of the treatment. Smith said Leaf already has doctor appointments scheduled about a year out. But maybe birthday No. 2 will be different.
"It's been all work and no play this year," she said. "But next year we're looking forward to a little more fun for the little guy."
johnp@durangoherald.comJohn Peel writes a weekly human-interest column.
Contents copyright ©, the Durango Herald. All rights reserved.
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Thank you so much Ryan Dempster family

Hangzhou

We have our dates!  Leaf will be in Hangzhou, capitol of the  Zhejiang province from November 20th - December 20, 2008 for stem cell treatment.    

Thank You!

Wow! We are receiving so much caring support from around the world! Many family members and friends have contributed toward Leaf's stem cell procedure, as well as many people we've never met. We are forever grateful to you all. The economic times are difficult, which causes us to feel even more humbled by the generosity in your hearts.
I will keep all of your names for Leaf - for when he is old enough to understand the gift you have given him. We are so excited for our little guy to have this opportunity in life. With strengthened mind and vision he will be able to enjoy and learn many things.

Thank you, thank you, thank you.

Sincerely, Johnny and Stephanie

Thanks everyone!

Hello Leaf supporters,

I just spoke with Stephanie and she said she is really moved by the positive response she and her family have recieved from everyone! So thank you, thank you, thank you!!

Our blog does not update the totals automatically, but we will try to post new numbers every few days! So keep coming back!

Also look for a new picture and posting in the next day or so. Leaf's Aunt Katie suggested we post some success stories so we can all learn a little more about the potential of this study.

If you would like this blog to notify you when new posts are added please post a comment or select the track this blog option.

Enjoy this beautiful October day!

-Deidre

Blog Fundraising Day 1!

Our Pay Pal link is officially up and running! We are looking to raise $60,000 to cover the expenses associated with Leaf's treatment. Please add your thoughts in the comments section. We will update this blog with updates on Leaf and his family's progress.

If you prefer to mail a check rather than an online donation, please use the following address:
1099 Main Ave., Suite 500, Durango, Colorado 81301 please make checks payable to "Sight for Leaf"

Leaf's family and friends plan for treatment in China

Leaf Baxter and his family will celebrate his first birthday in
November 2008. Born with Optic Nerve Hypoplasia, a condition that
effects the development of the optic nerves, he has almost no vision.
Despite visiting top doctors throughout the US, the basic response has
been that nothing can be done to improve his vision. However, his
parents and a circle of concerned family members aren't giving up.
Leaf and his parents are bound for China. In China Leaf will receive
a series of umbilical stem cell treatments. He will need to stay in
the hospital there for one month, not only to receive the stem cells
that can help improve his vision, but also to receive intensive
therapy to train his mind how to use the increase in vision.

Meet Leaf Gibran Baxter!

Leaf was born on November 3, 2007. Within hours his little system stopped working and doctors struggled to keep him alive. After weeks of tests Leaf was finally diagnosed with Optic Nerve Hypoplasia (ONH) and Hypopituitarism. This means that he has significant visual impairment and he doesn’t make his necessary hormones. Most of the hormones can be replaced through fabulous medical progress in the area of synthetic hormone replacement therapies. Leaf’s parents are researching and providing all necessary therapies and medical interventions possible to help their baby. He receives acupressure, physical therapy, hyperbaric chamber therapy, and vision therapy. But, there is nothing they or the doctors can do about helping him see. However, The Beike Institute in Shenzhen, is conducting a study which has, so far, produced notable results in young children. The sooner Leaf receives treatment the better for his overall development.

The $60,000 price tag for the trip and treatment in China is a major obstacle. Leaf has a charitable fund established to collect funds for the trip. Your donation will not be tax deductible because the treatment is not approved in the United States.

Please help us raise the money necessary to provide Leaf with the brightest future possible.

We can’t thank you enough for your generosity. This is a gift of love and life and will be forever remembered and cherished!