tag:blogger.com,1999:blog-9172354762710486340.post6518707381279796876..comments2023-10-04T03:58:20.878-07:00Comments on Love and Survival with Fragile X: Excuse me while I whine just a little bitSThttp://www.blogger.com/profile/17991027507602019139noreply@blogger.comBlogger6125tag:blogger.com,1999:blog-9172354762710486340.post-29578515707648896462011-02-14T13:36:56.022-08:002011-02-14T13:36:56.022-08:00Thanks for stopping by, Cheryl. Please let us know...Thanks for stopping by, Cheryl. Please let us know how the minocycline trial goes. We are very curious.Zachary Drakehttps://www.blogger.com/profile/08151836571134522060noreply@blogger.comtag:blogger.com,1999:blog-9172354762710486340.post-45274949460408358922011-02-13T22:22:45.319-08:002011-02-13T22:22:45.319-08:00Hi there, I cane across your blog accidentally but...Hi there, I cane across your blog accidentally but so grateful. My son Cole,about to turn 4... Has fragile x... Diagnosed in Jan 2010. I'm<br />So familiar and intimately understand the emotions you've gone through as well as every experience ....<br /><br />We are enrolled in the minocycline trial.. Scheduled to see Dr, Hagerman on thank you for sharing your experiences....<br /><br />Cheryl (and Cole)Fx momhttps://www.blogger.com/profile/12892155753928978762noreply@blogger.comtag:blogger.com,1999:blog-9172354762710486340.post-78598315558372229182011-01-02T15:13:53.344-08:002011-01-02T15:13:53.344-08:00Thanks, Jen, Vicki, and Fragilemom for the replies...Thanks, Jen, Vicki, and Fragilemom for the replies. Strabismus is when the eyes don't focus on the same thing at the same time. It is better and worse than "lazy eye". Better, in that Quinn is actually using both of his eyes, whereas in "lazy eye" the risk is that the child will stop using one eye, and effectively become blind in that eye. In strabismus, the child uses both eyes, but can't focus them on the same object at once. That's why an eye patch or drops won't work. It seems that at first the doctor thought Quinn was developing a lazy eye, and that's why the drops were prescribed. We had to stop the drops because they disrupted his sleep even more. But when we brought him in for the follow up, the doctor confirmed that both eyes are working well...but that surgery would be needed to make them focus together. Sorry, long story, but there you have it!SThttps://www.blogger.com/profile/17991027507602019139noreply@blogger.comtag:blogger.com,1999:blog-9172354762710486340.post-63687640537799902832010-12-30T07:37:04.404-08:002010-12-30T07:37:04.404-08:00Please keep us updated on the sleep study. Not su...Please keep us updated on the sleep study. Not sure what strabismus is??????? Poor Quinn doesn't look too happy. Our trips to the doctor are okay, but the ones to the ER have ALL began or ended in vomit. Luckily THEY get to clean it! Oops, did I say that?!<br /><br />Whining is good for the soul!fragilemomhttps://www.blogger.com/profile/02225506789152025137noreply@blogger.comtag:blogger.com,1999:blog-9172354762710486340.post-1554398085137959262010-12-30T01:52:43.654-08:002010-12-30T01:52:43.654-08:00Oh My! :-(
So the eye Doctor does not think that ...Oh My! :-(<br /><br />So the eye Doctor does not think that a patch or glasses will work? Our friend was also just diagnosed with this, but she at this point only needs to wear glasses, which is a challange for any toddler, so I am sure would be a challange for Quinn, but I was sorry to hear it was so severe he would need surgery, as i am sure that is much more in depth then simple ear tubes. <br /><br /><br />Now that he is older will they put in the larger more sturdy T Tubes? This fall has been amazing, we have only had 1 cold and it was so mild due to the tubes, compared to last year with 6 ear infections. I am sorry to hear though that Quinn will be headed back in for replacements.<br /><br />When do you get to hear the analysis for the sleep study, did they tell you anything that ngiht about what they were observing, or do you have to wait, I really would like to hear what you have learned. We are so thankful Holly sleeps through, even if she doesn;t fall asleep and she wakes up early, we get at least 8 hours once she is asleep which we are grateful for. I think joel might go insane if we had sleep problems, as he needs like 10 hours himself in order to function.<br /><br />We are going up to the Mind on the 5/6th of January to finsih up the Eye Tracking Study, I don't think we officially qualify for the Minocycline study since she took it as a baby, but I think we might do another trial reguardless, as we did see amazing progress the first time. Though she is still on Sertraline and I fear we will have to up her dose again, which is worrisome for such a little girl but the anxiety is starting to come back again. <br /><br />Anyways, I am sorry to hear about all the medical stuff going on, we wish you guys the best new year, and can't wait to hear about the holiday adventures, BTW - Did Zach's App get approved?Vicki Davishttps://www.blogger.com/profile/11126387831567811531noreply@blogger.comtag:blogger.com,1999:blog-9172354762710486340.post-53400707744040398042010-12-22T21:18:39.857-08:002010-12-22T21:18:39.857-08:00That is a lot, and yeah, going to the doctor is su...That is a lot, and yeah, going to the doctor is such an ordeal. Please feel free to whine. :)Jenhttps://www.blogger.com/profile/05535881273481381348noreply@blogger.com