Thursday, April 7, 2016

Nearing the end

Here we are, the day before Lila's last day of therapy in Florida.  It has been a long stay, but a very productive one!

To take a step back, Lila has issues with balance, coordination, muscle tone, long term/short term memory, and exhaustion/daily endurance.  All of these things combined make it difficult for her to remember the steps to walking, balance long enough to pull the info out of her brain, and then take the step forward (or in Sylwia's case...maybe backwards :-)).  These three weeks have proven to beat these odds for Lila!  Here is a video from the first day or two (therasuit on)....

She is taking an average of 45 steps consistently, and the first 20 are always a breeze.  After 20 steps, she starts to lose her balance and focus, and struggles a bit more.   I guess 4 1/2 hours of physical therapy a day, a 2-3 hour nap following each session, and the little bit of homework we could squeeze in each day, are enough to make anybody a bit wobbly from time to time :-)  All of these steps are without the suit on.  Once she put the therasuit on (which made her tired without even moving), she made a record of 75 steps!  The suit gives her extra support, but also retrains the brain to understand how her physical body should function and feel with movement.  Below is a video from earlier this week, week three (no therasuit).  Amazing the difference!

When I say that Lila is taking steps "independently", this may mean different things to different people.  For Lila, this means that Sylwia is on a rolling stool in front of her, with a belt around her waist for the sense of security Lila needs, although the belt is doing absolutely nothing to support her.  When others think of independent walking, they may think of walking just like you and I.  As for this, she is taking very slow/small steps, and about 17-20 at one time.  This, for Lila, is great!  We intend to keep up with the program at home, independent walking 30 minutes a day, and doing strengthening exercises all together as a family.

The amount of steps Lila is taking may not seem like a lot for some, but this means a lot for her.  We now have the tools to move forward and continue to teach her the next steps towards walking independently.  Actually, Lila loves Sylwia so much that she asked if she could stay and live with her here in FL.  Sylwia said, "You want to live with me?  Ok, if your Mom goes home and comes back in 6 months, she will come back to you not only walking independently, but running!".  This positive thinking and motivation gets us so excited, and now has us talking about what we need to do for Lila's future and independence.  Our biggest struggle right now is, and will continue to be, the balance between these life changing therapies and academics.  I am really having a hard time right now being able to foresee how to balance this all, as they are both of equal importance.  Nevertheless, what I do know is that we cannot get wrapped up in the stresses of school when we return, and have Lila lose all that she has gained.  I suppose the right answer will come to me, as we work out a weekly schedule.  Any thoughts here would be welcomed with open arms :-)

Lastly, it is a must that we do this intensive physical therapy 3 times a year, and this trip alone cost us over $12,000, which makes traveling to Sylwia very difficult.  If any of you out there have any thoughts as to how we could make this more cost effective, I would love to hear them.  Creativity in affording Lila the treatments she needs is something at which I have become quite proficient.

Thanks for following her journey...we love you all!

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