The Amazing Owen
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New Wheels at Last!
OK, we'll get to the wheels in just a second. First though I suppose I should update on the recovery from his Chiari decompression.  The incision had been healing nicely but in the middle of the night about a week or so after the surgery Owen thought that it would be fun to tear off his bandages and scratch at his incision causing it to open back up in one area.  Not a good choice.  Despite our best efforts to keep it cleaned out it got infected so we tried giving him Keflex to fight the infection but it just didn't go away.  So last Friday we headed back down to Duke where they cleaned it out and stitched it all back up.  They also changed his antibiotic to Clindamycin.  The incision is now looking much better and I think we're nearly there now.  We have to go back on the 24th to get the stitches taken out.

Otherwise he is doing very well.  The Clindamycin has made his tummy feel icky despite large quantities of probiotics, but we only have a few days to go.  The choking on liquids has now completely disappeared unless he's just gulping his drink too fast.  He was really in a great mood until his tummy started feeling sick.  He thought very hard about having a seizure yesterday, but thankfully Jigsaw was on the job and helped us to head it off.  He is just now getting his strength back so it's still going to be a good while before we can tell about the walking.  He is getting more and more daring about what he is willing to try though, so we're hoping that is a good sign. 

So, onto the wheels!

As you may recall we started the process of getting a new wheelchair back in January.  We wanted something lighter that he could move on his own if he so desired.  Well today it finally came.  It's a Ki Tsunami Little Wave.  I should have thought to take a picture of it next to something with some scale because it is seriously elfin in size.  Here he is today giving it a whirl:

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And he even played with the wheel a bit. I don't think he has any idea how to actually make it move yet - but at least he's curious about it rather than screaming about it. And when Daddy did wheelies with him in it he squealed with laughter!

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Here are some views without him in it:

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This thing is ridiculously light, I just can't believe how easy it is to push along.  I'm going to love it I just know it. 

We had originally thought that we might donate his old Bingo stroller but I don't think that's an option.  As much as I'm hoping his new one will save my back and provide opportunities for independent mobility, the old one still has too many uses.  For instance, here is Owen last week after getting his new stitches:

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The Little Wave doesn't recline and it doesn't have a full back so pushing him around after sedation won't work.  We also found that while the Little Wave goes like gangbusters on flooring or concrete, it's not so great on our gravel driveway where we go walking every day in warm weather.  So we will keep the Bingo for those times when the Little Wave won't be able to do the trick. 

It's going to take a bit to figure out the logistics of how to haul what we need on a smaller chair too.  You can put enough stuff to survive for a week on the cargo bag I made to fit under the Bingo. There isn't anywhere near as much room on the Little Wave but I think I can make it work.  His oxygen tank fits nicely behind the seat:

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I will probably make a small bag to tuck that all into so we don't have tubing and a mask falling everywhere, but it is convenient how it fits in there. I have a temporary bag that I have hung on the back for now, but I'll need a smaller one so I'll make that in the next few days.  You can buy them of course, but insurance won't cover a bag (it's a convenience item apparently, rather than a necessity to carry diapers, meds, food and toys) and they are really expensive to buy.  So tomorrow I'll get some cool fabric and make something that fits and looks appealing to a five year old. 

Zoom, zoom, zoom!
 
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