Monday, September 23, 2013

Our Picasso

We had the privilege of attending the annual Jackson Center Gala on Friday night.  It's their annual fundraiser and a really fun event.  It was even more special to attend a fundraiser that directly benefits Elena and our family personally.  It was quite emotional for us, even though we've only been there a short time.  I know I've mentioned it before, but this truly is a place where miracles happen every day.  We are so grateful to be part of it.

During the gala, they called all the parents up to be recognized.  We were all presented with a beautiful painting that our little ones painted.  I'm pretty sure I went into the "ugly cry" in front of hundreds of people.  This little painting means so much to us.  I know we'll cherish it forever.  We're so proud of what our Elena is achieving every day and the little personality that continues to emerge.  We're so happy to have found a place that loves our girl as much as we do and is always pushing her to achieve.

Here's the work of our little Picasso.  It's a priceless Elena original!:

On a different note, Elena has been sporting a new piece of equipment.  It's called a TLSO and don't ask me what that stands for!  It's basically a plastic corset that helps her with her trunk control so she can focus on holding her head up when working on sitting.  Trying to manage her trunk and her head proves difficult for her, so having to only focus on one has helped her tremendously.  It's super awkward looking and a pain to put on, but we've been pleased with how well she's tolerating it.  I mean I know how cranky I get with Spanx on, so I can't imagine how awful this thing is!   :)

Here is a picture of her in it:

And a video of her sitting watching her favorite songs:

Tuesday, September 3, 2013

An Update

My grateful attitude of late has been serving me well.  Each day I've been waking up feeling extraordinarily blessed.  Sure, I still have plenty of "wants", but I truly have been focusing on what I do have and it never fails to make me smile.  I've been lacking on my posts this month but it's mainly due to the sheer chaos of our weeks are and perhaps that I don't have as much venting to do with my grateful heart. So, sitting here in the Mooresville Starbucks, I thought I'd give you the run-down.

Elena had a great week last week at the Jackson Center.  She made it both days with a significantly less amount of tears.  We are LOVING the people there.  I have learned an incredible amount already from chatting with the staff and the other Moms.  Not only is it going to be a great workout for Elena, it's been such a support to me in just the few weeks we've been there.  It's an amazing place, where real miracles happen.  It's such a blessing to watch as kids take their very first steps, overcome enormous physical obstacles, smile at each other and enjoy themselves at a place where people actually understand them.  We're so, so happy to be part of it.

And as if on cue, just as we take a tick up in one area, we face another very serious issue that sets us back.  Elena's left hip has worsened since her last x-ray 6 months ago.  Hip problems plague kids with CP and unfortunately for us, Elena's little hip is already beginning to dislocate.  Her doctor recommended a surgery to see if it would help slow down the problem.  Unfortunately, once their hips begin to dislocate, there's really no stopping it.  It's more managing and slowing down the problem, not fixing it.  We're facing some tough decisions, that as a parent, are excruciatingly difficult to make.  We would appreciate prayers for not only her hip, but for us as we will undoubtedly struggle to make the best decision for our sweet girl.

On a happier note, we are excited to be making a trip to Cincinnati Children's hospital later this month, for Elena to attend a CP clinic there.  A CP clinic, is basically one HUGE doctors' appointment with all the specialists who collaborate on Elena's care together.  The reason we are going all the way to Cincinnati Children's as opposed to Riley is just because at Riley, they don't collaborate.  We really want to get a second opinion on everything we're doing for Elena and see if there are any other ideas for her issues that she still struggles with.  We're definitely looking forward to some fresh perspective!

Elena's been working really hard on her head control and her sitting.  She had a great day in PT last week where she sat and watching her "BINGO" for 3 minutes!  Yay Elena!

We had a great Labor Day weekend.  Low key for once!  We did go down to my parent's one day for a swim, which Elena loved!  Her legs were kicking in the water like crazy.  She's definitely our little water bug!

As always, thank you for all your prayers.  This girl is one special little lady :)