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