So most of you know that Tegan has been having some developmental delays and most recently diagnosed with Nystagmus for his eye problem. It seems like we are constantly thinking about his next Dr.'s visit. Jan. 31st I will be taking him to a pediatric specialist at Athens Regional at 7:30 am....that should be fun since me and Tegan usually sleep until 9:30. He has a test done on his eyes on Feb. 04 at Emory to determine if there is an underlying cause of the Nystagmus. Then we got lucky and don't have to take him all the way back down to Augusta for a 3 month check-up. That certain neurologist comes to St. Mary's once a month and we were lucky enough to get an appointment in April with him for our follow-up....I say follow-up but that appointment will probably tell us more than the last one with him did. In the mean time we will wait patiently on his chromosome testing to get back, which takes forever. Then we don't see the Dr. again about his eyes until July but Dr. Glassman is working to find another Dr. for his eyes...someone who is more up to date on Nystagmus. While waiting for all these appointments we will be seeing his regular Dr. and also starting early intervention with vision therapy and physical therapy. Although I am very happy to report the physical parts of him seem to really be improving. He is getting so much stronger and working harder to do things. He still has a little ways to go but I would say that he is improving daily...even just since his last Dr.'s visit last Friday he seems to have improved greatly. His vision is improving also. He is really following things although he acts like is depth perception is a little off when trying to reach for something. His eye movements sometimes seem to be good and sometimes extremely bad. I plan to keep him away from large crowds another few months b/c his screaming fits are hard to control in a loud area but after that point hopefully we will be able to slowly introduce being at family gatherings.
So that is an update on Tegan and all that we have to look forward to with the Dr.'s. I am hoping since he is showing so much improvement already that maybe a lot of these Dr.'s appointments will be pointless.
If Tegan has nystagmus and you are not sure what to expect or are concerned, you may find my website of interest - www.nystagmus.co.uk. I originally wrote all the experiences when I was fourteen. There is also a reasonably active forum full of sufferers and parents alike who are willing to chat.
ReplyDeleteJames