Katy’s Addition Is Officially Done

The old garage is now Katy's new entertainment and therapy room.

We’ve been reluctant to post anything about the addition for a while because we had – ahem – completely moved in without the final occupancy permit being granted. There were so many little things that needed to happen that kept getting put back because of weather, cost or both.

But we can now say that Katy’s addition is officially completed and we’ve posted new photos of the interior. (Nothing of the exterior yet because I haven’t had a free afternoon to get the Christmas lights down yet!) Two and a half years of planning and nearly 8 months of construction off and on. Now that it’s done, Shel and I are suddenly realizing just how stressful this whole thing was for us.

Katy's bath. Everything accessible for our little girl.

New mud room with enough room for Katy to do anything she pleases in her wheelchair or gait trainer.

The new utility room where Katy's non-stop laundry needs are handled.

This bath is just off the new mud room. It's also accessible for Katy.

With it done, though, we can return our focus to a number of therapies and treatments that we’re discovering more about each day. The trick for us is figuring out which ones can help the most and which ones we can afford! So, what are we looking at? Getting started again with the Anat Baniel Method. We did this briefly about a year and a half ago but didn’t really follow up with it for a number of completely unrelated reasons. Now, however, we’re looking at as a way to help with Katy’s mobility and especially an issue Katy has with her right foot.

For some reason, Katy will take her entire right foot and turn it completely in towards her body. Picture it like this: if I’m holding her in a standing position, her leg comes straight down like normal but the outside of her ankle is almost touching the floor, not her foot. It’s almost like what would happen if you rolled your ankle in a basketball game; except she just holds her foot like this for absolutely no reason that we can figure out – and for days on end. Now the reason ABM holds a lot of interest for us here is because we’re all fairly convinced that Katy is not purposefully doing this. It’s just something that her brain is for some reason telling her foot to do. ABM deals with helping the brain make new connections with the rest of the body. Maybe there’s some way of getting this – and many other of her mobility issues – to improve.

A couple of other possibilities that we’re hearing more and more about: hyperbaric oxygen treatments but we’re not sure how it would relate to Katy’s issues; and even the distant possibility of umbilical cord stem cell therapy – but again, we’re not sure how it would help an issue like Katy’s or if it’s even a road we want to go down.

For now, horse therapy starts up again soon, swimming therapy continues every week, extra speech therapy is going on every other week, and she’s also continuing speech, occupational, physical, cognitive and musical therapies at school. She’s a busy girl. And yet, we’re always frustrated because there seems like there is so much else we could be doing.

Oh, and one other update: Katy’s eye doctor has decided that she doesn’t need surgery on her eyes to fix her strabismus. Her ability to focus together has improved enough that he wants to go back to trying to patch her right eye for an hour each day to help the left side gain some more strength. All I’ll say is “Easier said than done.” And we’ll leave it at that.

Final update: Congrats to big sister Maggie who was accepted into St. Joseph’s Academy as part of the Class of 2014!

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