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Hello Again Friends & Family~
Sorry for the delay, here is the updates!
Sept 19, 2007
We went to see Dr. Brothers today. We had Rylea look at letters and
numbers in a flip chart/book and she was able to trace them up to
20/3500. That was great to see that she had improved from the
20/4000 which is what it was when we returned in August. We also
took pics of her optic nerve and there did seem to be some
improvement although still a little difficult to know for sure at
this point.
Thanksgiving 2007
We went to Springfield to see a pediatric ophthalmologist who was
amazed to see that she was indeed able to see "hand movements" and
if he asked us once he asked 20 times to verify that she in fact had
never had any vision or reaction to light prior to the stem cell
transplants. We discussed the fact that it was truly vision and her
brain is processing what her eyes are seeing.
The next day we went back to Dr. Brothers office. He ordered her
glasses based on the eyeglass Rx from the pediatric ophthalmologist
we saw in Springfield and after having her trace from the vision
chart he determined that once again her vision has IMPROVED! She is
now up to 20/2000.
The day before Thanksgiving Rylea's glasses came in so I took her
back into the office to have them fitted to her little face. When we
got them fitted I told her to look to the side of the cubicle (it
was a huge mirror, but she didn't know that). When I turned her
toward it she said, "OOOH, She's sooo cute!" I said, "Sissy, that's
you!" She wanted to know how it was her so I explained a mirror and
that it is a reflection of her, and to that she said, "Oh my
goodness!" My little princess had just seen herself for the first
time EVER!!!!! (And I might add thought she was pretty darn cute.)
Christmas 2007
We went in to see Dr. Brothers for another check up. Today her
vision had once again increased from 20/2000 to 20/1200 and when we
looked at the pics of her optic nerve there were more signs of
improvement there as well. Rylea has experienced one of the greatest
miracles ever, a miracle that I could never thank God enough for
allowing us to be a part. We knew we were being led in the right
direction but now we are able to validate that to everyone else. We
are able to offer hope to families that have never any hope of their
child seeing. Being able to do this not only for Rylea but for
families all around the world is priceless!
By far the greatest moments of the Holiday season for us was to
watch Rylea watching the Christmas tree. She was like a toddler,
absolutely fascinated to see the lights on the tree as well as
telling us what ornaments she could see. She had NEVER had any
interest like this before regarding our tree. We're certainly not
going to run short on things to thank God for anytime soon.
January 9-12, 2008
We went to the University of Florida to see Dr. Kaushal who was
interested in validating Rylea's progress on a bigger scale in order
to help in researching to be able to offer the cure for ONH one day
right here in the USA. She had a MRI, pics of her optic nerves,
blood work & a visit to the pediatric endocrinologist, a thorough
exam by the pediatric ophthalmologist, Dr. Khuddus. They too were
definitely able to validate that Rylea does in fact now have vision
and they were all AMAZED at the fact that one of the leading causes
of blindness in children that had never had a cure (probably because
no one has even been researching to find one) now has HUGE potential
for curing blindness or even more mild visual impairments in
hundreds of thousands of children...all because of one very brave
little girl!
Later in January 2008
Another trip in to see Dr. Brothers and to order new lenses already
for her glasses! (A change of about 3 steps up since Thanksgiving)
Rylea's vision is at least 20/1000 now...simply a miracle of God and
the doctors He led us to!
February 27, 2008
Tonight while I was in the kitchen cooking dinner I heard Ry
straining and struggling in the bathroom. When I rounded the corner
I asked her what she was doing and her response was none other
than..."Well it's dark in this bathroom, where is the light? Will
you help me turn it on?" I of course did so immediately but I NEED
to point out that Rylea has never asked for a light to be turned on
and quite honestly thought the concept was a little silly when she
heard her sister ask me to turn on the light a couple of years ago
before she could reach them herself.
February 28, 2008
This evening when Rylea got out of the bath she came walking up to
me wrapped in her bath towel and said, "Mommy, I can see really
good!" She then held up her fists and asked me to tell her how many
fingers she was holding up. I told her she was silly because she
wasn't holding up any fingers. So I help up 3 fingers and reversed
the question toward her. She put a lot of effort into getting her
fingers held up like mine and said, "It's 3 like this mommy." I kept
changing the number of fingers and she did her best to keep up and
show me as well as telling me how many fingers I had held up to her!
Things here are going great!
A lot better than expected actually which is nothing short of a
blessing. Rylea has now completed 3 stem cell transplants and I'm
going to try to give a brief rundown of the past week or so to get
you all caught up...July 30
We arrived back in Chicago after a VERY long flight from Shanghai.
We didn't sleep a wink, I think we were both too excited to step
onto American soil!!! We spent the night in Chicago at Grandma &
Grandpa's house and ate a good ole home cooked meal...prime rib for
mommy and hot dogs for Rylea ;-) Rylea slept that night and pretty
much got right back on schedule but mommy had a much more difficult
time, as tired as I was I couldn't seem to sleep more than about 2-3
hours a night for the first few nights.
August 1
We drove from Chicago to Webb City...Home Sweet Home! We were very
excited to see Kyra and I think she was pretty excited to have her
mommy and sissy back home too!
August 8
We had an appointment with Dr. Brothers (Rylea's eye Dr.) this
morning...I was excited for him to see her respond to the light as
she had been for us. He had made her a cardboard "E" and colored it
black. He explained to her that if he laid it on it's back the "E"
was pointing up... He examined her eyes, she showed him how she
could tell which eye he was shining the light into etc. Then he
turned the lights down low and took her over to the wall where the
eye chart shines. He asked if she could see that light so she
pointed to it on the wall. Then he asked her if she could see the
picture of the "E" like the one that he had made for her...she said
yes and was even able to point to the 3 ends of the "E". Watching
this was very emotional for both Dr. Brothers and myself since it
was by far more than either of us had expected to see as a result of
the stem cell transplants at this point. He said that he believes
that her sight at this point is 20/400 and that she may be a bit far
sighted but we are just going to continue to let the stem cells and
God continue to do their work for a few more months to see where
this road leads.
August 12
Rylea asked me to go get the pen light this morning...so of course I
did...we shined it in her eyes and she was able to grab the light.
Then I told her that I wanted to show her something then I wanted
her to tell me what she saw...so I held my breath so she couldn't
feel me breathing on her and I got right up to her then backed away.
I asked her what she saw and she said, "I SAW MY MOMMY!!!" So I
asked her what I looked like and she said, "Mommy, you are
beautiful!!!" So then I held her up to everyone and she was able to
identify everyone immediately. What a miracle, an absolute answer to
many, many prayers!
Talk to you all soon and in the mean time remember God is Good!
Love from China~
Dawn & Rylea Barlett
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