Zoe's Neurogenetics Appointment
We traveled to Vanderbilt on Tuesday to see Zoe's neurogeneticist (our favorite specialist, by the way). Grady and I took Zoe to her therapies from 8:30 to 10:00 and then got breakfast at Chick-fil-a before heading out of town. So he got to meet all of Zoe's therapists and see what she does every week.
We had a 1:30 appointment at Vanderbilt, so we were able to do therapy first, which doesn't usually happen, and we got back to Jackson at 6:00. That's a pretty good timetable for us, to only actually be gone for 7 hours on Vandy days.
Her appointment with the doctor went well and was uneventful. He brought 3 other doctors with him this time, which he doesn't usually do, but the more the merrier, I guess. I think they may have been studying under him, probably doing a genetics fellowship. Anyway, that happens from time to time because our kid is SUPER interesting. Really, it's because her condition is SUPER rare AND super interesting. It's sort of like grown-up show-and-tell. A case like this doesn't come along that often, so everyone wants to see it. It's cool...I understand. At least they're attentive :)
At first, he started talking about a muscle disorder that causes weakness that she may have, but then decided she definitely didn't because of her eye paralysis. It's too pronounces to be simply a muscle weakness, so that idea was discarded. He agrees that she definitely needs to have her eyelids lifted, but also agrees that drops every 30 minutes and a trip to her Memphis opthamologist every two days for a month is not worth it at this time. The plan is to wait until she can communicate a bit better and tell us if her eyes hurt (meaning that they are probably getting dry and she needs drops). We hope by the time she turns 3 we'll have been able to do it. We came to the consensus that an MRI will not be fruitful enough to warrant one in the next several months. (We've mostly met our out-of-pocket, so if they wanted one, we wanted to do it before the end of the year). They all agreed it would be really cool, and they'd love to see pictures of her brain, but that they should wait until they think it would be fruitful. I'm happy with that.
Zoe is really trying to crawl. I took these a couple of days ago.
We had a 1:30 appointment at Vanderbilt, so we were able to do therapy first, which doesn't usually happen, and we got back to Jackson at 6:00. That's a pretty good timetable for us, to only actually be gone for 7 hours on Vandy days.
Her appointment with the doctor went well and was uneventful. He brought 3 other doctors with him this time, which he doesn't usually do, but the more the merrier, I guess. I think they may have been studying under him, probably doing a genetics fellowship. Anyway, that happens from time to time because our kid is SUPER interesting. Really, it's because her condition is SUPER rare AND super interesting. It's sort of like grown-up show-and-tell. A case like this doesn't come along that often, so everyone wants to see it. It's cool...I understand. At least they're attentive :)
At first, he started talking about a muscle disorder that causes weakness that she may have, but then decided she definitely didn't because of her eye paralysis. It's too pronounces to be simply a muscle weakness, so that idea was discarded. He agrees that she definitely needs to have her eyelids lifted, but also agrees that drops every 30 minutes and a trip to her Memphis opthamologist every two days for a month is not worth it at this time. The plan is to wait until she can communicate a bit better and tell us if her eyes hurt (meaning that they are probably getting dry and she needs drops). We hope by the time she turns 3 we'll have been able to do it. We came to the consensus that an MRI will not be fruitful enough to warrant one in the next several months. (We've mostly met our out-of-pocket, so if they wanted one, we wanted to do it before the end of the year). They all agreed it would be really cool, and they'd love to see pictures of her brain, but that they should wait until they think it would be fruitful. I'm happy with that.
Zoe is really trying to crawl. I took these a couple of days ago.
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