Dayton Review

So, Tallie was nice enough to point out that I haven't really kept my blog world up to date with the Dayton developments, so I thought I'd review Dayton's story.

Dayton was born with a clean bill of health, but it became fairly obvious fairly soon that something was wrong with his vision. For starters, his eye's pointed in different directions. Our pediatrician said to give it a few months that some babies eyes just take longer to develop. Finally at 4 months we were sent to an opthamologist, who said his eyes looked healthy and dignosed him with Delayed Visual Maturation (DMV). DMV just means his eyes are taking longer to develop and that most babies vision will "kick in" before 6 months. At 6 months we went back to the Opthamologist who rechecked his eyes, right eye still looked healthy, left eye looked like there might be problems with the optic nerve, but he couldn't get a great look at it. Changed the diagnosis to Cortical Visual Impairment (CVI) and a possible Optice Nerve Hypoplasia(ONH) in the left eye. CVI is a brain problem, the eyes are healthy, but the brain just can't interpret the images. ONH means the optic nerve developed wrong and there is really no way to tell how badly it affects vision until Daytons old enough to tell us. We were sent to get an MRI to look for other brain damage (since the optic nerve runs directly through the brain), see an endocrinologist (double check hormone levels) and set up with therapists: OT, vision specialist, developmental specialist.

At this point in time, Dayton was starting to fall behind developmentally: wouldn't lift his head for tummy time, nowhere near sitting, wouldn't play with toys. I attributed all of these to his vision problems. We went to see the opthamoligist again for test results, when he mentioned that he was farther behind developmentally than they would expect for even a visually impaired baby and sent us to see a neurologist. The neurologist reviewed the MRI and declared that his brain looked healthy. He said that the delays and the vision were all part of a bigger problem. He explained, "The hardware is there and looks good, the software's just not kicking in." He told us some kids brains "kick in" and others don't, but that there was nothing he could do but wait.

We continued therapy and went on with life. We went to see the endocrinologist for a follow up. At that point in time he realized Dayton hadn't grown in about 6 months. His weight and height have dropped from about 50% to not on the chart. So, here we go again. Off to the feeding clinic and a GI specialist. They've adjusted Dayton's diet to help him grow (have you ever tried to just "make" a baby eat) and we add another therapist (speech pathologist to help with the eating). The speech pathologist thinks he might have silent reflux and we are trying to schedule a swallow study to rule it out.

For our part, we have searched outside of Western medicine to see whatelse is out there. We started a NAET doctor and we'll see what happens. The speech pathologist also mentioned a crainalsacreal(massaging the head to increase blood flow) that I'm looking into.

So where is Dayton now? He is starting to gain trunk control. I can hold his waist and he can control his head. He is starting to put weight on his feet. He had sensory problems and wouldn't touch anything and the therapy has really desensitized him. He reaches out and tries to touch things. He does see something. We aren't sure how much - light for sure, but if you get close enough he will look in your direction and smile. The vision specialist says he sees contrast the best, so he might just be smiling at our hairline. Whatever, he's cute. He likes to giggle when he knows people are near. He does develop - SLOWLY, but he's moving in the right direction and that gives us hope. There are alot of unanswered questions, but thats where we are for now.