Saturday, February 24, 2007

Various Updates

This past Thursday, I took Peyton to her regular opthalmologist. For the first time in weeks, the doctor got a good red reflex from her left eye. This was a good thing! There is some part inside the eye which has been swollen for a few weeks. The doctor increased her medication for that. Hopefully it will be much improved when we go back next week. This was the first time in weeks that this doctor didn't either call or send us over immediately to the glaucoma specialist!
In the afternoon, we had Peyton's 9 month check up with the pediatrician. Her weight is down roughly a pound since the feeding tube was removed a week ago. We need to get her feedings back up to what they were. She's doing, at best, about 18 oz a day which is not quite good enough. She needs to be closer to 28-30 oz a day. Still, it's much better than we'd thought she'd be doing. Hopefully given a little time, she will improve. We don't want her weight dropping off. That was a little too much for one week.
I spoke with the neurologist this week as well. The results of the skin biopsy from about 6 1/2 weeks ago showed no chromosomal abnormalities. So, Peyton does not have the syndrome he thought she had. So we are no further ahead than we were before. He and her pediatrician still feel that this "constellation" of symptoms is a syndrome. However, it would have to be so rare, probably, that it is an undiscovered syndrome. For now, it's that "Peyton" syndrome. We have no diagnosis and no prognosis. In fact, at this point, if we were to find out what syndrome it is, it would probably be a matter of treating each symptom therapeutically and following her development very closely because there wouldn't be enough research available to say what should be done or what the long-range outcome of such a syndrome would be. Very sad and frustrating, but that's where we are at with that.
We had a wonderful visit with Moira's godmother, Debbi, and her daughter Emma. Moira loved having another little one in the house to chase around. I think they wore each other out! It was great to see them. Hopefully it won't be too long til we see each other again. They flew back to Tucson, AZ this afternoon.
All in all, it was a really good week. I was a little stressed out as to what might be. Hoping for more news on the genetics front, but it is what it is. We'll keep you updated as always!

No comments:

Post a Comment

We welcome your comments and especially your prayers and support as our family journeys through the ups and downs of life with a special needs and medically fragile child. Thank you for visiting!