I wish that I could write that we've seen a dramatic difference in Maggie's neck these past few weeks. Part of the reason I haven't posted is that I have been quite discouraged about it. The first week after surgery we saw signs of improvement and had so much hope. Now, four weeks later, it seems like when the brace is off her head looks just like it did before surgery. Even with the brace, it's not perfectly straight. The muscle release was not supposed to be an immediate cure, but I was hoping to see a bit more improvement than this.
Don't get me wrong. I have no doubt that she needed the surgery - but it just confirms my worst fear that there is, in fact, something more going on than just the muscle. We are going back to Atlanta in a few weeks to see the plastic surgeon and the neurosurgeon and hope to get some more direction on our next steps. Frankly, I am so tired of wondering, questioning, thinking, pondering, doubting, and all the emotions that go with it. Every night I get up between 3 and 4 am (not on purpose!) and just browse the Internet andthinking about every scenario, every decision, every "what if". It's just nearly impossible not to be consumed with it because of the lifelong issues and impairments that can go with not getting her neck fixed. Unfortunately, it's much more than just a cosmetic thing.
I cry out to God every night to heal her and to make her head straight. I don't know why He hasn't nor why none of the doctors so far have been able to help her. I am so exhausted with it all and honestly just want to give up, mostly because I am tired of torturing the her. Plus, I find myself getting frustrated with this poor child who obviously cannot help it. I find myself not ordering school pictures of her and not even taking pictures of her. It's not that I don't love her and think she's adorable - she absolutely is - it's just that it makes me realize how much time has passed and how little I have been able to help her. There is something about a still photograph that makes her tilt seem so much more permanent in time.
On a more positive note, she is walking more and so excited about it. I'll have to post a video soon...