Thursday, July 06, 2006

We had a great 4th. It was steamy, but the rain held off. We went down to Albany like usual, with my Mom and three sisters, their friend Abbie...my in laws, Eric, his girlfriend Kelli and her two kids Austin (yup another one) and Ashley. We had a GREAT time. Ashley is about 6 months older than our Austin and they get along great. They are so cute. My sis took some pictures. I will post one when she sends it to me. The fireworks display was the best I have ever seen.

Yesterday I took Connor to the geneticist. He agrees that there is something going on, but admits we may not figure out what or if we do there may be no treatment. Luckily I am well aware of that, but I hate not knowing. So they are doing a full metabolic screen including Carnitine, Amino Acids, Lactate, Pyruvate, pipecolic acid, urine organic acids and fragile X. He did feel that the TSC2 test would also be helpful, but he did not draw blood for that yesterday. One because he needs to get prior approval from the insurance company and two because he was concerned about blood volume. They took about 7 viles...Connor was NOT cooperative!! So, now we wait. I am not a patient person!

That's about all that is going on here...oh the driveway is being paved today, but that's not fun...it does look great though! So, all for now...

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