Sunday, August 19, 2012

All Dressed Up

We went to a friend's wedding yesterday, which gave us the rare opportunity as a family to dress up a bit.  We're more casual around the Leyba household, so this was definitely a fun treat (just to give you an idea of how often this happens, Jason's dress shirt was still in the dry cleaning bag from the last time he wore it....in 2007).  Savannah was amazed to see her mommy wearing heels and daddy wearing a tie.  I had planned on having my brother get a nice family photo of us all together, but (not surprisingly), we were running late and there was no time for that.  So, instead, I've got a variety of shots...none with all of us together though.





We had a lot of fun together, and Savannah enjoyed running all over the place with the other children who were there.

In other news, we've begun potty training Savannah.  So far, so good.  I think she was ready for us to finally start this with her, which is why she's taken to it all so easily.  She'll have her first day in the preschool room (!) tomorrow, and I think she'll be okay to ditch the diapers...fingers crossed anyways :)

I've also returned to teaching this semester (first day of class is the 29th, though I've been back on campus for a few weeks already taking care of all the prep work).  Jason has started taking Savannah to school one day a week, which has gone surprisingly well.  We were a little worried about how they'd do navigating the car seat situation, but it's gone fine so far.

Jason is doing well...keeping up with his Kennedy Krieger home program.  The paperwork has been submitted to insurance for the standing frame, so hopefully we'll hear back about that soon.  We've been told that we should expect to be denied the first time around....so I'm gearing up for a battle with insurance....have all the abstracts from studies that prove the benefits of standing for folks with SCI.  Though who knows, we've not been denied anything yet by insurance, so maybe we'll be pleasantly surprised.

I hope that all of you are enjoying the last days of summer.  We're off to the water park to enjoy the warm weather!

Love you all,

Ashley

Saturday, August 4, 2012

Wheelchair Frustrations, Part 89674981

One day, we'll have this wheelchair thing figured out.  Sadly, that day is not today.  After Jason's SCI-FIT session this morning (scroll to the bottom for a great video of him walking while there!), we headed to Pittsburg for a meeting with a seating specialist.  We've known for a while that the cushion on J's chair was not right for him.  It was uncomfortable and did not offer much in the way of support or pressure sore prevention.  The folks at Kennedy Krieger tried to get him in with a specialist there, but there wasn't enough time for a full evaluation.  Hence our journey today.  After a few minutes with Antonio, the owner of the wheelchair shop, we realized we should have done this long ago.  He knows wheelchairs, and he has a passion for getting it right and working with his client.  That has been missing from the people we've dealt with previously....

The cushion he has now is definitely wrong, so that's the first thing we need to fix.  The specialist also recommended changing the foot rest height and angle, the "dump" (amount the seat angles down), the type of seat back he has (if we do this, it'll be his third seat back), and the amount of room he has around his thighs.... That's if we keep this chair.  Right now, J is in an 18 inch chair....he should be in a 16 inch chair.  Insurance only pays for a new chair every 3-5 years, so we're in the position of debating how many changes we should make to the current model before we just throw the whole thing out and start over agin, out of pocket.  This has been one of my biggest frustrations over the last year.  When Jason was fitted, he was only 2 weeks out from his accident, had 9 broken bones, and was in a full chest and neck brace.  It was not an ideal time to be fitted for a chair.  Not surprisingly, he's had problems, lots of problems, since getting his chair last fall.  I really do not understand why hospitals fit you so soon...why they don't allow you to stay in a loaner chair at least until your bones have healed and you're out of the braces.  It really wouldn't add that much time to the process, but it would lead to far fewer frustrations down the road.

Anyways, enough of that rant.  I can't complain too much.  We're lucky enough to be able to make changes to the wheelchair in order to get it right for Jason.  A lot of other people have to wait the 3-5 years in a bad chair before they can get anything fixed.  I can't begin to imagine how much that negatively impacts their daily lives.

Now, on to the video I mentioned earlier.  Jason walking!  Hope you enjoy :)

video