First, let me just say, thank you so much to everyone who has responded to me. I've posted on here a few times now and have been reading various posts on here for some time, and I am truly thankful for the help everyone is willing to give.
I have a new question I suppose because I'm just a little confused. My daughter is now 2 years old and while we've never had any imaging done, the specialists that she has seen pretty much all agree that she sustained some kind of nerve injury, at least a mild one. They all say it must be mild because her function is honestly really good. She can raise her arm over her head with pretty much no difficulty, she externally rotate her arm, ... the main difference is that her arm just seems more limp than her "non-injured" arm, and she does have mild scapular winging on the injured side.
I am so very thankful for her level of function... we feel very lucky in that regard for sure. I suppose my most recent worry (in addition to the scapular winging, which is somewhat of a recent change that we've noticed in the past couple months) is what is now clearly atrophy in her deltoid and upper arm area. I feel like, while over the past two years, her function seems to have improved, the atrophy (which presents itself as a noticeably thinner shoulder/armpit and upper arm area) seems to have gotten worse/more noticeable. To me, that is confusing because much of what I have read seems to sound like the atrophy gets worse due to an inability to use the arm as a result of the injury... but in my daughter's case, she actually seems to use her injured arm more than her uninjured arm (at least she chooses to feed herself with her injured arm).
I suppose my question is, is there anything that we can be doing to help with this? Should we be doing "e-stim"? This is difficult because the doctors and therapists see her function and tell us that is not necessary, however, I suppose I worry about her losing function over time. Can that happen? What can we do to avoid that? Does atrophy eventually stop or level out, or can we expect that her arm will just continue to lose pace with her other arm in regards to muscle development?
Any help/advice any of you can give would be greatly appreciated. I am just really struggling with all of this and the worry about the future that comes with it. It's been very difficult when the specialists tell you to "wait and come back in a few months." We've even seen Nath, Cornwall, and Dr. Waters has viewed videos of our daughter and Nath believes she sustained an injury but there is nothing to really do, Cornwall said he didn't believe an injury occurred, and Waters said he couldn't say conclusively whether an injury occurred or not. (By the way, all of these visits/videos were about a year ago now).
I just need help... very anxious about all of this... desperately want to do something to help my daughter, but feeling like I just can't do anything to help.
Thank you so much
Forum for parents of injured who are seeking information from other parents or people living with the injury. All welcome
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