Sunday, October 5

Just more fun

Owen had a few more doctors appointments this past week - one with a pediatric neurologist (PN) and then a followup with a pediatric ophthalmologist (PO). He has developed Nystagmus, which is to say that his eyes shake a little. A CT scan and MRI had both shown that everything looked normal with his brain, a very good thing, but his pediatrician wanted a PN to take a look just to be sure. The PN said he didn't see any evidence that the Nystagmus was caused by anything in his brain and he deferred to the PO to determine the cause. The PO said it could either be a muscle control issue or it could be due to the fact that he is very farsighted and his eyes shake because they're trying very hard to focus. Either way, Owen needs glasses. The PO had said back in March that glasses could be necessary if he hadn't outgrown the farsightedness by now, but I had all but forgotten that with all of the other things we've been trying to figure out in the meantime. All I could do was laugh about this news. Glasses? Really? He still won't leave his hearing aids alone, but at least I can cover them up with that silly hat! I can't imagine how hard it will be to keep glasses on his face! And how will that work, exactly, with the hearing aids? It seems like a lot of stuff will be sitting on his little ears. At least wearing glasses won't affect any sort of development (except possibly motor skills, but those can catch up). I worry that he doesn't wear his hearing aids enough and his speech will not develop properly. But, we start weekly speech therapy next week to help with that. We also have THE BEST early interventionist who comes to our house weekly to work with him (me) and keep tabs on his development - which seems to be right on track. Her area of expertise is hearing loss, but she's already making plans to bring someone knowledgeable about vision impairment with her to answer any questions we have. TEIS rocks! I'm so thankful for this State program and the fact that they try really hard not to let little ones slip through the cracks. Even through its flaws and restructuring (did I mention it's a State funded program?) everyone has done a great job taking care of us and I would feel really lost without their help.

So, we have a glasses prescription to fill. As soon as we have the glasses, I'll try to post some photos so you can see how cute Owen looks with them on. I had a glimpse the other day when I was talking to the optician about how to fit an infant in glasses and he was TOO CUTE! Have I also mentioned how thankful I am for his very good disposition? That should be of some help in getting him used to the glasses. The doctor also said that they see so much better with the glasses that it tends to keep them from pulling them off. I'm a little skeptical about that one, but we'll see (no pun intended)! Oh, and Owen also has to have an ERG (electroretinagram) done to see how his retinas are working. This is similar to the hearing test they performed on him in that it measures brain activity to sensory stimulus, in this case light, in patients who can't tell us what they see or hear. He'll also have to be sedated for the test. The PO said this test would somehow rule out any connection between the hearing loss and vision loss/Nystagmus.

Welcome to Holland! Or are we in Spain by now??

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