Going Nowhere Fast

So, the appointment with Orthopedics proved to be fruitless. Yes, she does have a hip that is slightly dislocated but it's her left, not her right like we thought. She has a terrible contracture in her leg on the right side but they can't do anything about that, nor can/will they do anything about her dislocated hip or her scoliosis (she has a 35 degree curvature in her spine). It was all a bunch of blah, blah, blah about how they don't think she's experiencing any pain (really now?!) and how surgery would be pointless (which we already knew). About the only thing he said worth anything is that there's nothing we aren't doing that we should be and he suggested asking Physical Medicine about Botox injections in that right leg contracture in case that may be causing her some "discomfort".

I feel a little like screaming at them. How can they possibly say, "Yes, she has scoliosis" but "it doesn't hurt"?! I was told as a kid that I had a very slight curvature in my spine and I've had neck and back problems my whole life that cause me "discomfort" that leads to lack of sleep and headaches. I don't see how they can say that a 35 degree curve isn't giving her any pain. It's so unfair that she can't speak for herself!!! The doctors seem to think that we have no idea what we're talking about when we say she's hurting... but they don't see her crying when you touch her right leg or when she's sat in one position too long or made to be in a position that hurts her. It's so incredibly aggravating.

We have since gone up on her Keppra again (anti-seizure medication) because we started seeing increased seizure-like activity and we've added in an extra dose of Diazepam per day as well (she went from getting it every 8 hours to every 6). This seems to have helped at least a little but she's still not on a regular sleep cycle and we're beginning to think that her bed is just not comfortable enough for her. So, I'm going to be shopping around for some kind of mattress topper (don't know what you call them).. like maybe Posturepedic or something like that. I don't know if it will help the issue at all but it's worth a shot.

On a more positive note, we took a few St. Patrick's Day photos today (well, since it's 2am, it was actually yesterday lol)... here's one for y'all to enjoy!

 



We have our appointment on the 21st for Botox so I will let y'all know how that goes! Hoping we can convince them to do the Botox in that right leg as well as her ankles! Keep her in your prayers please!