Saturday, September 19, 2009


It has been raining for a week and it is supposed to keep raining! I was feeling a little stir-crazy this morning and was ready to get out of the house. Luckily, the Gillilands were feeling the same way, so we all headed to the Montreat playground for a picnic and some playtime.

While Julie and I sat with Shelby and Aubrey....

Harding and Derek splashed and played and got absolutely soaked!

Good times. :)

And now for a Shelby update. We went to see the new ophthalmologist on Thursday. I'm very happy to report that when the nurse turned off the lights, Shelby was able to track a flashing light toy back and forth. This is the first time I have seen her track anything--she does have some vision!! Unfortunately, after the doctor dilated Shelby's eyes, she noticed a paling of the optic nerve. This means that there is some damage to the optic nerve--we don't yet know to what extent. We're definitely sad about this because it means that even if Shelby can overcome the cortical vision impairment with her brain, she'll never have perfect vision because of the optical impairment. I'm willing myself to focus on the fact that she is seeing something though!
Yesterday, Karen from the Governor Morehead Preschool came over to meet with Molly (our Early Intervention Service Coordinator) and me. We mostly filled out a bunch of initial paperwork and talked, so there wasn't enough time to do a functional visual assessment on Shelby. Karen said that she is not accustomed to working with CVI children so young--usually that diagnosis happens when a child is 1 or 2 years old. The fact that Shelby's impairment was identified so early will definitely work in our favor. She also told me that most children with a cortical vision impairment improve with time. She explained that people with CVI sometimes get visually overwhelmed. For example: a person with normal vision might go into Super Wal-mart and feel a little overstimulated and stressed out, but a person with CVI might get so visually overwhelmed that they would be unable to see much at all, even if they have some sight in familiar environments. Another interesting thing about CVI is that often the peripheral vision is better than looking straight at something. A child with CVI will often look at something, then look away before touching it. Karen gave us a dvd to watch on cortical visual impairment, plus I've ordered a book on Amazon that is supposed to be helpful.
Karen will be working with us to find toys that Shelby will be able to see better. Shelby will at first need solid-colored (especially red) or shiny metallic toys that will stand out. Eventually we might be able to move to two-colored toys. She'll also be able to see them better against a solid background. John and Barbara have already made us a black felt board for this purpose. We also need to be careful about putting Shelby on the ground on dark solid blankets instead of light-colored or patterned ones. I think that the Governor Morehead preschool is going to be a really good resource for us and I'm ready to get started with working on Shelby's vision. Karen is coming out again on Tuesday.

Wednesday, September 16, 2009

The Wild Side

We went to the Atlanta Zoo last Friday and had a great time. The weather was cool and the zoo wasn't crowded at all. I think that Harding's favorite exhibits were the orangutans and the pandas. He was also really interested in the playground and the train (typical). It was nice to have some quality time with Aunt Chris too!

Tuesday, September 15, 2009

Busy Busy

Shelby Frances working hard with her awesome PT (Beth):
This is certainly turning into a busy week! Shelby has PT this afternoon. The Governor Morehead folks called yesterday and are sending someone to our house tomorrow afternoon to do an assessment on Shelby and to start working with us. She'll be bringing brain stimulation stuff to help figure out how Shelby is functioning in her environment and will give me ideas on ways to help her. She'll also evaluate how often they need to come work with us. I'm very curious about how this visit will go.

Also, after a great deal of reflection on our appointment with the ophthalmologist back in June (where we were told that Shelby was seeing fine) and taking suggestions from various others, I have decided to switch ophthalmologists. Even though Shelby's eyes work great, the doctor should have prepared us for the possibility of a cortical visual impairment. Maybe the CVI diagnosis would not have hit us so hard if we had known it was a possibility. The opthamologist we saw is actually the only board certified pediatric NEURO-ophthalmologist in Western North Carolina, so he has to know something about hydrocephalus and the brain. Also, we were referred to him because of Shelby's nystagmus (which could have been a sign of seizure activity). Since he is a neuro-ophthalmologist, he should have known this as well and immediately referred us to a neurologist. Thankfully, Shelby is not having seizures though (and sorry about the tirade).

Several people recommended that we see Dr. Bashinsky who is another pediatric ophthalmologist in town. I called to schedule an appointment and they had an opening for this Thursday. Hopefully we'll know more about what Shelby sees after Wednesday and Thursday's appointments. So yes, this is turning into a busy week, but I am really glad to be moving forward with helping Shelby!

Wednesday, September 9, 2009

First Physical Therapy Session

We ended up deciding to go with the Early Intervention Program for all of Shelby's therapies. They are great--very family centered and it is all done at our house. I think that Shelby will really benefit from doing physical and occupational therapy in her natural environment.

Yesterday, our service coordinator (Molly) and the physical therapist (Beth) came out for the first session of PT. I don't think it could have gone any better. When they did her developmental evaluation at the beginning of August, she had some asymmetry. That has completely gone away. Beth was thoroughly impressed with Shelby's strength and coordination. She is holding her head up very well and doing great on her tummy! Also she can roll from her tummy to her back. In fact, Shelby is ahead of where most 3-month-olds are developmentally. Beth gave us a list of things to start working on--exercises that she would usually assign a 4-month-old. Shelby's just advanced like that. :)

One of my biggest worries lately has been that Shelby will get behind physically because of her cortical blindness. I've been wondering what will motivate her to roll over, crawl or walk if she can't see things that she is curious about and wants to examine more closely. It will be Beth and the occupational therapist's job to help us with this. Also, Molly is begining the process of referring us to the Governor Morehead School for the Blind in NC. They are based in Raleigh, but have satellite programs all over the state for younger children. I'm not yet sure what their role will be, but apparently they will come out to our house also.

In the mean time, we will be doing PT every two weeks, and starting occupational therapy soon. We also have a few different functional visual assesments coming up soon. These will be done by Shelby's opthamologist and the Governor Morehead folks and I hope that they will tell us that Shelby has some vision.

Thursday, September 3, 2009


Shelby laughed today! It was a funny little giggle when we tickled her belly. I don't know if she knows what laughter really sounds like, because we haven't been doing a lot of it recently. Maybe this is her way of telling us to lighten up. Anyway, what a glorious sound it was! It seems like every milestone is a huge blessing with this little girl. We are so happy!!!