Alison was FS4SB surgery #154 at Vanderbilt. She was 22 weeks gestation at the time. Hers was the first of two surgeries scheduled that day. Surgery #155 was Isaiah. He was 24 weeks at the time. We had run in to his parents a few times during the course of our consultations and we had our meeting with the head of Vanderbilt's NICU and our NICU tour together. The doctor basically told us that having FS was going to do nothing for Alison and he wouldn't take the risk. Isaiah's parents were told that the surgery would be of benefit for him. We both made the decision to have the surgery. We didn't see Isaiah's parents again after that tour. I did walk past his mom's hospital room a couple of times when I was doing laps around the floor, but her door was always closed. One of the residents did mention that she was not doing as well in her recovery as I was. That was the last I heard about her or them until earlier this year.

Isaiah's mom came across an entry I had made in another FS baby's guestbook and she e-mailed me. I was thrilled to hear from her because my whole family had often wondered how they were doing. I told her Alison was doing great, much better than we ever thought she would, and directed her to Alison's webpage. She wrote back and said Isaiah was doing good, too, and she would send pictures of him. She never did. I never heard anything more from her. It wasn't until we got back from the FS4SB reunion and joined the mail list that I found out that Isaiah wasn't doing nearly as well as we thought he was. (It was at this time that I finally did see a picture of him in our reunion scrapbook. He's adorable.) As is turns out, he was born just a month after the surgery. He has had many problems with his hydrocephalus requiring lots of shunt revisions and he now actually has two shunts in place. At nearly 2 1/2 years old, he does not sit on his own or crawl. He is unable to say any words or close his mouth. Monday afternoon he underwent Chiari decompression surgery. Because his hindbrain has slid down into the top of the spinal column, his scull is putting pressure on his hindbrain. By removing part of the scull, the hope is that it will relieve the pressure and improve his ability to function "normally."

It's times like these that I really feel schmucky. I've been upset for over a week that Alison, who's only outward signs that there is anything wrong with her is her intoeing right foot, the bump on the back of her head from her shunt, and the scars from her surgery, is going to have to wear a brace on her right leg for a few hours each day. Alison, for whom FS was supposed to do nothing, is as close to a "normal" child as you can get without actually being one. And Isaiah, who had such a great prognosis at the time of surgery, has gone through so much in his short lifetime. It really puts things in perspective.