Lets help Mia :) My daughter is 7 months old and was just diagnosed with bilateral ONH. I have had questions and have been waiting for answers since she was 4 months old but had a gut feeling she had low vision before that. Her MRI showed NO abnormalities with her brain structure and we are scheduled to have her hormone levels tested in February. Besides that test the only other thing the doctors have said is they will monitor her vision, at this point we dont know what she sees. I do have her starting in home therapy next week since she is delayed on reaching multiple milestones (I am so eager and thankful for this to start!). From what I have read there is such a variance in symptoms I feel even with having a diagnosis the future is full of unknowns and feel kinda lost on where to go from here...but I do have a few questions. My daughter seems to have high muscle tone in her arms (almost always straight out to the side but slowly improving)and some times her legs.Has anyone seen this and if so did PT help? What about with fine and gross motor skills? She just started to hold her head up but still keeps it in a down position, can roll from her back to her tummy and is now trying to grasp things. She is also a super easy baby especially compared to my lovely son, (not a lot crying or talking, easy to fall asleep, doesnt need a lot of attention if anyes) everyone says I am so lucky but I am always begging for more, is that as weird to say as some say it is? Anyways thanks for listening to my long story, this is the first group I have reached out to. I would love to hear if anyone else has a story is similar to ours or any suggestions/advice for us going forward. Oh and we are in Portland Or.
Posted on: Sat, 03 Jan 2015 00:17:46 +0000
Trending Topics
Recently Viewed Topics
© 2015