19 March 2015

Shriner's Visit I

Liam had an appointment with the Shriner's Hospital for Children down in Greenville, SC this week. The appointment was actually set up by our pediatrician who when seeing Liam for a yearly check up was disturbed by the scissoring he was doing and felt that it was to the point where it needed to be fully checked out. I asked if we could just go to Duke since Greenville is 6 hours away but she really wanted us to go down there for a consult. Liam did great for the drive because he laid in the back seat reclining on pillows the whole time.  Now before you get upset with me for not having him properly seated and buckled, let me tell you- He HATES his car seat. It does NOT provide proper positioning for long periods of time and he can't stand it. It would be different if we had a wheelchair accessible van because he would be able to be in his wheelchair, but for now, we do what we can do and that is make Liam comfy and happy.

So, after driving all that way we literally took a 30 second x-ray and spent ten minutes with the ortho. I was hoping for a lot more interaction with some people since we really don't have any oversight for Liam in regards to nuero, ortho's, specialists in rehab, etc... but that was all we got.

The Dr told me that Liam's left hip (which is his much shorter leg) has a misshapen socket and the ball of the joint is shifted down from the center. He said it will eventually come out of the socket some time in his teen years and we can do one of two things: Nothing-which means when it comes out we will be managing pain for him for the rest of his life (depending on how bothersome it is to him) or we could do surgery to fix it and he would work on his right hip as well even though it isn't nearly as bad as the left. The surgery would be a four hour procedure and would require hip casts for 6 weeks with an expected return to Liam's "normal" in about 8-9 months following that.

He saw Liam's breathing (his goofy, stubborn, horrific habit of locking his jaw and closing his airway) and was concerned that he might not even be a candidate for the surgery because of his 'airway' issues. Because after all, 1 in 20 of  'these kids' die during the procedure. Yes. He actually said that to me. Sigh.

I know surgery has risks. Like, duh. But his airway is not an issue. He would be completely sedated and intubated for the procedure so his concerns were not my concerns. I know my boy and his behavioral oral fixations isn't one that would give me pause when thinking about proceeding with this surgery. He has a bad habit. He doesn't have an airway or breathing issue.

I told him he's never sick, never been hospitalized for sickness and I wasn't concerned.

He did mention us seeing a full team to evaluate Liam and look at him with new eyes. We have scheduled an appointment in June (the earliest they had) to see a "Tone Specialist" who is supposedly very good at what she does. It will be very interesting to have her lay eyes on Liam and have a perspective from someone who works so often with kids of such a severe nature. Liam takes no meds for his condition and that usually shocks everyone (the looks of surprise always crack me up). We've never had a good Dr on board to help us with him. He still may not need any, but it will be nice to know that and not wonder if we shouldn't be trying something else.

So for now, we at least know more information about Liam's hips and we will hope to garner even more info in June.

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