Ellie had an appointment at The Shriner’s Hospital on Thursday, February 19th. Here’s the… Report from Ellie’s Daddy
We got in early today, which was good… first they took some x-rays of Ellie’s hips, which is related to one of the big questions we had: is she going to need hip surgery soon?
The doctor said she didn’t see any change since the x-rays from June, so things aren’t any worse. Therefore, no hip surgery for now!! It IS still a likelihood at some point in the future, but for now, not necessary. So good news right off the bat!
Next we discussed the SDR surgery (the one on her spine)… they thought it’s too early for that, since she’s just starting to walk, so they’d suggest revisiting it in another year or so. And apparently it’s starting to show up that having the SDR does NOT prevent the need for further orthotic surgeries (i.e. hip surgery), so that side of it isn’t as big a possible plus anymore.
Then Ellie walked down the hall some, to show them where she’s at with that. They were impressed with her progress, and agreed with Gemma at The Movement Centre that Ellie would be a good candidate for a device called a S.W.A.S.H. (she gets to be a SWASH-buckling pirate!).
It should help with her scissoring. Here’s a site with some pics and more info on what it does, including helping with hip alignment.
It’s been mentioned by Ellie’s therapist at Children’s Hospital in Winnipeg too, but isn’t something easy to get through the government… and we found out why, as the therapist at Shriners said it costs about $1300!!
Good news again: Ellie’s going to get it for free.
Downside: it has to be ordered in and then adjusted, so we’ll have to come back down to Minneapolis in a month or so to do the final fitting. We’ll pick up the new AFOs (the foot braces) at the same time.
We did also get some different braces/splints, which we’ll probably try out for the overnights once she’s out of her current AFOs. They’re a more padded version, meant to be more comfortable.
Downside is they’re larger (as a result of the extra padding), so they wouldn’t fit inside Ellie’s footy pajamas… so we’ll probably switch to 2-piece jammies whenever we make the switch (it’s not imminent, since her current AFOs work fine for overnight still).
The new AFOs are going to be different — they’re making articulated ones for her, which means that they’ll have a joint near the heel allowing them to bend. The idea is that she’ll be able to use them more during the day, especially one she gets the S.W.A.S.H., since they should be easier to walk in.
So that pretty much sums it up: done by 11:30a.m., no hip surgery or SDR yet, got padded braces, and getting S.W.A.S.H. and new AFOs when we go back down in a month or so.
All in all, a good day.
