Thursday, December 2, 2010


  I've been saying for 6+ months that I've got to quit carrying Lilah everywhere, but she hates to be in a stroller for long and it always seems easier to just cart her around the house myself.  Easier to carry her to and from the car, in and out of stores, rather than fuss with her big stroller.  I'm always afraid that when we make the jump to a wheel chair (or something like it) that she will just be in it all day--which is definitely not what I want for her.  For the last few months, Lilah's favorite thing has been for me to just tote her around the house looking at things....lingering....touching...playing...on my hip.  This is totally where she's at developmentally and she has so few opportunities to explore because she's immobile, that I don't blame her.  But, as my waist is rapidly disappearing and she seems to get heavier by the second, I've been starting to freak about it.  That's a lot of hours of carrying by the end of the day.

What's our next step? I've researched the latest and greatest strollers.  Nothing better than we already have--which don't fit the bill.  I've looked at bikes and trikes.  We've got a new therapy chair, which is good for table top activities, but stationary and not what she wants.  We've been discouraged around here, because, although she's making seems to be as slow as frozen molasses.  And, the worst part, is that Lilah is frustrated.  I thought from the beginning that she would be so severely handicapped that she wouldn't even know it.  Thankfully, that is not the case, but what it means is that she is trapped--wanting to move and not being able.  It keeps me awake at night, thinking about the imprisonment that must be--to be totally dependent upon what someone else shows her or brings her as her only stimulus.

So, when her Physical Therapist mentioned that she had a little girl who was L's age who used a manual wheelchair, I said 'great, we should try it', thinking that it would be another place for her to sit, with the possibility of moving in the future.  We talked it over and concluded that, since her upper body has always been more coordinated and strong (which is not saying much) than her legs and feet, a push chair could be a viable option for her down the road.

Monday, that little girl's very gracious family brought her, and her wheel chair to our house so that Lilah could try it.  I thought we'd just sit her in it and see if she could even tolerate it.  But, her PT placed her in it and....she pushed!! Not far and not consecutive pushes, but she definitely got it.  Here is the video:

It may not seem like much, but I tell you, we were overcome.  It's a heavy load to see your baby in a wheelchair....something that will likely be a permanent situation.  But, it was also the most hopeful I have ever felt for her quality of life.  To think that she might learn to use that tiny little chair to explore her world anytime in the near future is way more than I've let myself dream for...and the gifts that you don't even know to hope for are the best!

The hard part now is getting Lilah has to go through insurance, be custom fitted and made, shipped from CA, and you know it's the holidays...blah, blah, blah.  It's a good thing I couldn't run out to Target and buy her one that day, because I would have...and wasted all that good insurance money.:) But, I'm getting impatient already.  I've called and looked everywhere I can think of to rent/borrow one, with no luck.  So if any of you 7 readers out there have a pint sized manual pediatric wheelchair in your garage, call me.


The Avery House said...

Gina, that is awesome! If I had one, I would send it right over!

Sara said...

I so love her spunk! You are right, she knew exactly what to do with it. I'll start praying she gets it before Christmas, what a gift for her! Blessings are coming, sweet girl!

Anonymous said...

I have been following your blog and this is great news!!! I was so excited for you!!! GO Lilah!!!

kellywanhainen said...

Gina, that video made me cry! Lilah is such a wonderful girl and I can't wait to see her, and the rest of you for Christmas!!

Alexandra said...

Aw that is so wonderful! She seems so curious about it, kind of like "Hmmm, what is this thing? I'm intrigued!" I hope that they get that wheelchair to you as soon as possible so little Miss L can explore on her own!

Garola Gang said...

YAY!! So proud of her! That is so great! Praying the process will be quicker than expected!!!

Anonymous said...

so, so cute! Love the amazement on her face and all the sweet noises in the background from family!

If you haven't yet, you might try to call knox county schools to see if you could borrow one until you can get one. (Go through the PT department.) Lots of times they have loners and since you all are zoned for KC, they might be willing, just not sure though since she's not in school yet.

I've also got a friend I can ask if she has any thoughts about other temporary options too.