Growing

I figured it is about time for me to figure out how to put a video on here, so I started up a youtube account and uploaded my first video.

Sophie has been doing so well with the Ipad and she loves peek-a-boo barn so I purchased the full version yesterday for her.  She focused on it for more then 5 minutes which is amazing in itself.  But even more amazing, she turned every page on her own and was very happy the whole time.  I have included the short video of the end here.  The reason I wanted to have a video is to show her hand movement.  She kind of moves her hand at the wrist back and forth to swipe at the Ipad screen.  This is a totally new move for Sophie which she started using when we introduced the Ipad.  It didn't take her too long to figure it out either.

We still just use the Ipad with Sophie lying on her mat or sitting in my lap.  It is too difficult for her to coordinate her eyes and hands otherwise and she is unable to use it properly.  Baby steps.


Sophie has been growing in leaps and bounds, physically and mentally.  She has shown us so many new skills and is vocalizing her wants and needs much more lately.  We know that she is trying so hard to tell us what she wants but sometimes it is hard to know what she is trying to tell us.  Tomorrow I am hoping we will begin a new journey to help fix that.  We have our appointment with Augmentative Communication Services tomorrow and I am positive that she is going to be referred to the program.  She deserves it so much and I will fight for it.  We have abandoned our trial of "look at me for yes" and have been working on "smile for yes" and it is going much better.  We want to move ahead from there and have her use words.  Having a non-verbal child is very, well, it is the most difficult thing to be honest.  I can deal with not sitting up, not walking, not eating by mouth, and all the other things that are so difficult for her.  But the not talking, it is hard.  She communicates, sure.  But it is guess work alot of the time for us and I know that she is frustrated at times, although she is little miss laid back go with the flow, thank goodness.  So tomorrow is the day that we have to get out act together and prove that she is ready for a system that she can talk to us with.  If it is the Ipad, awesome.  If it is something else, bring it on.  We're ready, she's ready.

We are also about to trial a wheelchair.  Sophie currently has an "adapted stroller" which has been great, but she is growing out of it and it isn't doing the job it needs to anymore.  She needs more and more support as she gets bigger, Sophie is very hypotonic (floppy) which is great in some ways like she doesn't need meds to stay loose and we will hopefully avoid alot of the usual surgeries that go hand in hand with severe spastic CP (Sophie has mixed type CP - Dystonia and Athetoid mostly)

This chair is going to come with us for a week.  It is much too small for her as shown, so they are going to fit it for her and then we will be able to trial it with her.  As you can see, it is a real wheelchair, no hanging out in a stroller for our girl anymore (now, the stroller is a paediatric special needs adapted wheelchair that was the low price of... wait for it...$8000, yeah special needs ain't cheap)

This is a Zippie and we are also going to try an Iris which has an amazing tilt function that keeps the centre of gravity in the same place.  This one has tilt but not quite as advanced.
It is a big thing to be moving up to this, she is such a big girl now and is ready for a cool ride!  I am thinking hot pink might be in order.  :)