Friday, February 01, 2013

Charlie's wheelchair is on its way!

We're taking a break from usual programming here at La Maison Boheme because my son, Charlie is having a big week. As most of you know, Charlie is a stroke survivor who is fighting the effects of Cerebral Palsy and Epilepsy.  But mostly he's just a superhero angel baby who melts hearts with his piercing love-glance and leaps tall assumptions in a single bound.

Among other things, Charlie's speech has been a concern for our family.  We're all learning sign language and pointing at pictures and rejoicing in his small verbal gains. He sometimes says "mama" and sometimes says "dada" and every once in a while he'll pop out a fully formed word here and there. But it's nothing he's able to repeat and we usually watch that word come and go - never to hear it again.  But that is all changing this week.  Charlie has started talking!  Here's a little video for your viewing pleasure. (Make sure you turn up your sound!)

A while back, I posted my Christmas wish list and at the top of that list was Charlie's wheelchair.  Many of you darling readers have emailed me to ask if he got the chair within the insurance time-frame.  Thank you for your sweet and thoughtful messages! I'm sad to tell you that the chair did not come before the cut-off.

For those of you who are thinking, "what the hell is she going on about?" here's a little explanation.  I wanted Santa to bring Charlie's chair BEFORE the calender year was up.  Why did I want this?  Because if it was delivered before New Year's Day, our family would pay nothing - we had already met our out-of-pocket cap for the year. But when our insurance rolled over on the first - as it does every year - we would be on the hook for a few thousand dollars up front. As with most medical needs, help comes slowly and our chair is finally being delivered this Monday!  We're really excited to give Charlie the mobility and autonomy he so deserves. We had a loaner chair for one week before Christmas and it was AWESOME!  Here's a shot of my son, Walker, pushing Charlie around the hospital.

I am thrilled at Charlie's speech gains this week and really looking forward to seeing and using Charlie's new ride. It's going to be a big game changer.  The fact that it's going to cost eleventy-gazillion dollars (not really) is just part of life now.

If you're interested in learning more about Charlie or donating to his medical fund to help cover the cost of his chair, please click HERE.  And thank you darling readers for all your support and encouragement! 


Unknown said...

Wow.....we cried watching the video. So happy for all of you and for the impending arrival of the wheelchair!! It's all just awesome. Way to go, Charlie.

A Perfect Gray said...

wonderful video - so thrilled that he is coming along so well - and the wheelchair! terrific! donna

Loretta Fontaine (EcoHappy Blog) said...

Sarah- What wonderful news about the speech and the chair!

There is the photo of Walker pushing Charlie - and it seems he's following a squiggly blue line on the floor - a path to happiness, no doubt!



Jennifer Jones (from Detroit, MI) said...

Light and Love to Charlie and your family! Photos please!

Emily said...

This is a milestone for Charlie for sure!
I'm glad you got the wheelchair. Sorry it was late for insurance purposes, but I know you are oh so grateful to have it.

Unknown said...

Charlie is lovely, the video if him speaking really touched my heart-my little brother has Down's Syndrome and although he's 16 he doesn't speak, so I know how much joy it brings to hear small words :)