4/4/08 CHOP appointment

Yesterday we had a 1:30 appointment with the ophthalmologist. They were to check for a condition that I couldn't find out much about. It looked like it was some type of cancer but I am not sure. Connor does NOT have it. Thank God! The dr there said before he dilated his eyes that they didn't think it was what Connor had because as long as he has had all his symptoms then he would be blind by now if that was what it was. His eyes are fine with no clues as to what is going on with him.

It was a very long day. Between traffic and construction, we left the house by 11:30am and did not get home until after 6:15pm. This has to end soon because we are all feeling mighty frayed around the edges. Poor Connor sitting in a car seat for hours on end with only doctors and tests in between has had enough and so have the rest of us.

We are supposed to be going back on Tuesday 4/8. He has to go to Pennsylvania University Hospital for an EMG and then right over to CHOP to see the Ataxia dr. The EMG appointment was supposed to be at 10:30 but the ataxia team wanted to see him that day and they were trying to squeeze him in before the clinic started. They told me to go ahead with the EMG and hopefully they would still be able to still see him. But, they couldn't promise. It all depended on the timing. So, I moved Connor's EMG appointment up to 9:00 so that we could make sure that the ataxia team would get to see him. We got home last night to a recorded message that his ataxia appointment was at 3:15. I was mad. I moved an appointment up and we are having trouble getting Julia off to school because of it and now we don't have an appointment till 3:15?? What am I supposed to do with Connor for the 5hrs or so between appointments? I called them this morning to try and straighten it out and the receptionist didn't know anymore than that the appointment is in the book for 3:15. She took a message and I am waiting for the nurse to call me back about it. Then the EMG place calls me up to tell me I need 2 referrals for this appointment (I don't & we got that fixed) but then she tells me that I have an appointment for 8:30am!! There is no way we can make that. As it is we were going to have a hard time getting there for the 9am appointment. They are trying to see if anyone will switch appoint times with us. I am waiting for a call back about that.

So, for now Tuesday is up in the air. We know nothing new except more things that Connor doesn't have. The speech/ swallow eval is not until 4/19 and the metabolic team isn't getting us in until 6/24. Connor is still the same no improvement and not getting any worse. He is exactly the same including developmentally. He has not gained any ground in that department at all. I am still trying to get all the therapies set up for him but the way our appointments are spaced that has not been easy.

I will keep everyone posted as things progress.