Blogspot not Facebook

Last night was a terrible night. We stayed over in Worcester with Julia's family, in preparation for an appointment in Boston, and River was up from about 1am to 5:30. Our alarm went off at 6. I had no idea what was going on until I stuck my finger in his mouth this morning and felt a new molar poking through. One he had been working on for awhile. I think it's his 4th. None of them have completely come in, but there are points poking up in his whole mouth. But while I was laying awake I realized that I'd rather spend more time updating River's blog, rather than updating (and checking other's) status in Facebook. What is the point really? I admit it's a great tool for finding old friends, classmates, even connecting with new friends. But it does not feel like a quality experience. So here I am, in my attempt to carry through with my resolution.

Our appointment in Boston was with a very popular, difficult to get into pediatric opthalmologist at Boston Children's. I was secretly hoping that he'd get some cute glasses, but no such luck. It was similar to other appointments we've had... his eyes are fine, the problem lies in his brain. However, we did get some measurements which somewhat satisfy my left sided brain. They did a procedure called Visual Evoked Potential where they put 5 electrodes on his head and showed him a range of black and white stripes and measured the response in his brain. It was great since it is so difficult to evoke a response from him with traditional black and white images (they tried this also). They were able to tell us that his response time was slightly delayed and his acuity in his right eye was better than his left. The acuity in his right eye is roughly 20/400; his left is 20/600.

The opthalmologist recommended the spring conference by the Perkins School for the Blind which I already planned on attending, and continuing his involvement with early intervention and his visual therapist. The good news is that his cortical system is still developing and continues to improve.

Other good news is that we did get approved for our additional personal care hours which comes as a big relief. Last week we took River to Manchester, NH to try out different special chairs. We think we found one he likes. With the Leckey chair he is well supported and in a better position to learn and engage in his world. It's a hefty price but insurance should cover most or all of it. The bad news is that it will take several months to get it. Now that I've seen how good he looks in it, it will be difficult to be patient for it's arrival.

Finally, I posted about this in Facebook but I have to share it here also. I attended my first 6am spinning class this week. Not being a morning person, this is a pretty amazing feat. I had to wake up at 5am to make it to Keene in time for the class. I felt like a superstar afterwards!

Love to everyone,
Hannah


Here's River getting set up in the Leckey chair. It goes up and down so that he can sit at the kitchen table or get down low for play time. I'll post more pictures once he gets his own.