CharleyWrap

Because of his scoliosis progressing, his orthopedic doctor recommended that he wear his TLSO at all times when sitting. We have not done that for a few reasons.  First, the TLSO is very cumbersome and makes caring for him (ie: changing diapers, etc) quite a bit more difficult.  Second, it is hard plastic and it doesn't seem very comfy for him.  Third, it is always riding up on him which is extremely annoying.  And finally, research seems to indicate that neuromuscular scoliosis is going to progress how it's going to progress regardless of bracing.

So we ordered a CharleyWrap for Jackson a few weeks ago, and it came in the mail today.  So far I like it so much better than his TLSO. It seems very comfortable for him and he has been wearing it without complaint since early this afternoon.  We went out to the library today and it worked well in his chair without needing to adjust the laterals.  He was able to sit up nice and straight in his chair without any drooling.  Drooling will happen when he is not feeling good in his chair (which is a LOT of the time) so for him not to be drooling is big.

I do have to open it up for diaper changes but opening it is way less work and time than removing the TLSO.

I like it a lot, and I'm happy we got it.  Here are some pics:

 

And here is a shot of my funny girl all dressed up in her green hat and 8 necklaces...she made me count them quite a few times today, so I know.

Finally!!

Thanks to the efforts of the fabulous Lee Diamond, Jackson is now approved for a purchase of a PRC ECO2 with ECOpoint (eye gaze communication device)!!!  Yay!!!  Can't wait for him to get it!!

Oh, my brother!

I got a text from Lee yesterday on the way to work.  He snapped these pics and wanted me to see them right away.  He said Zoe spontaneously decided to climb up on Jackson's futon, started hugging on him, and she kept saying "Oh, my brother!"  Too sweet!!

The smiley chart

Zoe has some behavioral issues.  I could go into details but words don't really do it justice.  It's just something you have to experience to understand.  So anyway, I decided to try a behavior chart.  We laminated it and use a dry erase marker to make smiley faces on the flowers when she does something good and erase a smiley when she does something she's not supposed to.  The smileys don't necessarily have to correspond with the behavior under it.  Then if she ends the day with 5 or more smileys, she gets to pick a prize from the prize bag.  Sometimes she earns her prize and some days she doesn't.