Hallie's ONH & SOD Blog

3 Month Check-up Appointment

February 5th, 2010

Hallie noticed the light from the fireplace.

Such a sweet heart!

"Elmo" watching Elmo on the computer. Notice how she's intentionally holding her head to see the screen peripherally.

Again, watching Elmo.

Hallie looking at a Mr. Llama

"Hello pretty girl in the mirror."

Last week Hallie had a three month post China opthamologist appointment.  Dr. Robert King is her doc here in Denver.  He works closely with her teachers at the Anchor Center (a preschool for the blind).   There is an exam room right in this amazing school.  Her vision teacher JC (25+ yrs of experience) and I met with Dr. King for Hallie’s exams.  We are so blessed to have such an amazing team following Hallie.

Dr. King was hesitant to be overly excited about the results.  He said that there was no improvement in her central vision, and so she remains at 20/1000.  BUT her visual field has improved.  This is consistant with what we’ve observed in her.  When Hallie is “looking at” something her eyes look striaght ahead, and she is seeing things directly on the side of her head. (see pics above for examples.)  Dr. King also said there was a slight change in the color of her optic nerve (more pink- like there was more blood going to the area).  Again, he said that he didn’t want to be too optimistic.  So we will continue to wait.

Our expectations going into this treatment and the outcome were that we’d love ANY improvement.  We have seen that and will continue to pray for more.  Hallie continues to talk about colors and lights all the time.  She reaches an arms length away to feel the window when light is coming in, and asks to “look out the window” all the time.  A few weeks ago I put a new lamp in our living room and Hallie noticed it.  She was reaching up along the wall and said, “See that shiny mirror?”  Hallie holds mirrors up to the side of her head to look at them peripherally all the time.  She has identified objects visually (not consistently yet) but she has labled two different puppets, glow light up toys, a shiny pinwheel, a pink zebra pillow, a hand held mirror.  She can identify these objects, but there is a lot of “coaching” to talk her into using her vision.  She has to be in a state of concentration, and I tell her I want her to find something with her eyes first, then grab it or tell me what it is.  It takes a lot of effort on her part.  BUT we have not given up yet.  She’s only had 3 months for these stem cells to work, and they will continue to do so for over a year more.  SO we are hopeful and waiting.  And even if she doesn’t gain any more vision, she can learn to use the amount she has so that she can navigate her world easier.  (This sounds like a small thing, but can make a world of difference for a visually impaired person.)

Hope that Hallie would gain vision is the obvious reason for traveling all the way across the world for this procedure.  But we have seen improvements in the not-so-obvious areas as well.  We are thrilled with all of the unexpected gains she’s made developmentally.  She has SO much more confidence in her exploring.  She initiates exploring new places and walking around on her own (before she would be fine just sitting on the floor and rocking or would explore only if we motivated her to do so.)  Her posture is much better, she has more physical stamina and she holds her head up like a sighted person.  The last, and probably best improvement she’s experienced is the ability to self calm.  This may sound like not that big of a deal, but she used to have a REALLY hard time in new/loud/chaotic places.  Even at school she barely made it through a 1/2 hr session w/o needing a break in a cuddle swing or something else to help calm her.  ALL of Hallie’s teachers can’t believe how much more “regulated” she is with her emotional/neurological self.  They have said that that improvement alone is worth our efforts to China… b/c now Hallie has a much better opportunity to learn.

So with all of that being said, thank you again to everyone who has been praying for our sweet Hallie.. (who now likes to be called “Elmo” btw)  We will continue to be hopeful for the next months… God is not done with His work in her…

To be continued…

Katie

Entry Filed under: onh,Uncategorized