Brooklyn has had her x:panda hi/low chair for almost two years now. We use that chair around home because it can lower to the floor to play games or interact on Boston’s level or raise up to the table for dinner. She also has the exact same hi/low chair for school which is great. When we are “out and about” we use the MaClaren special needs stroller which we have actually had for four years! I have been debating on getting more of a “typical” wheelchair for her. There are days that she needs more support – especially when she is sick or having seizures.
The great thing is that we discovered that her x:panda works with the Combi wheelchair base! Which we also happened to stumbled across a Demo sale on the Snug Seat site and got it for a steal!! (what a blessing!!!) Her seat lifts off of her hi/low chair and slips onto the wheelchair base. It is pretty heavy but the frame folds down – so everything will still fit into the back of my Honda since we did not win the adaptive van :(
My princess seems happy with her new wheels, don’t ya think?
Now…if only that safety seat belt came in pink! (any of you seamstresses have any ideas on covering them???)
Here is a picture so that you can get a better idea of what her entire wheelchair looks like. The chair back tilts as well as the ENTIRE chair -which is a great feature to have (all of you with wheelchair experience know this!!)
So…..we have reached another milestone in this Rett Syndrome journey….the wheelchair. Keep in mind – I have NOT given up on weight bearing, standing, and dare I say walking as part of Brooklyn’s future. Yes, I do DARE say it…because we are two strong-willed, tough girlies and we do not give in to Rett Syndrome, EVER! (ok, Brooklyn is the tough girlie, but her toughness is rubbing off on me!) In fact now that her hip surgery is done we hope to fight back stronger than ever! Rett Syndrome will not win this fight. The reality of it is that I have to make decisions along the way to best help Brookie and this is one of those tough ones. But I did it and without crying……ok, maybe a little bit of crying.
(If you want more info on the MaClaren or the x:panda they are both listed on www.rettgirl.org along with lots of other cool stuff!)
Kelly -
You girls are some of the greatest and strongest ones I know! Brookie looks so happy with her chair and she is just too cute!! Wishing you girls a fun summer with the new wheels. Stay tough, you are huge inspiration to so many!
Lindsay
Amazing!! I am looking into some wheels for my Bayleigh. She is starting to get very long and hard to carry… Do you have any tips that would help us as she grows?
Just wanna say although i haven’t seen you since high school, i have been following your blog since Kristen put it in the Journal. Am very disappointed that you didnt win the van, however, can say am totally adddicted. My children are 10 and 8 (James and Sophia) and want to tell you they think the world of Brooklyn and Boston just as i do. Although we all have our journies, wanna say i believe you AND your family are spectacular. Makes me realize we shouldn’t worry so much about the little things! If there is ANYTHING i can do to help you or your family, PLEASE, let me know.