Getting There

Sophie is hanging in there.  She will be at the 4 week mark of being sick on Sunday.  She is back on prednisolone and it seems to be helping.  She has a double ear infection now and all we can do is assume everything has been viral this whole time regardless of what her 4 xrays have shown since no antibiotics have helped. 

We had an unexpected trip to emerge via ambulance on Monday because Sophie had a bad seizure where she choked on all of her secretions and stopped breathing for a short time. We ended up at hospital for almost ten hours because she was needing oxygen support.  It was very scary to see and I am so thankful she is alright.  It was one of those moments where everything is going in slow motion but going super fast at the same time.  I can't get the vision out of my head yet and it reminded me in a slap you in the face kind of way why we don't leave her alone for even a minute.

Sophie had her best days yesterday and today and I can see the light at the end of the tunnel, at least a glimmer of it.  It is about time that my girl caught a break.  December 1st, I have been begging to see this date on the calendar, a new month must bring new health, right? 

Since she has been feeling a bit better I have been able to play with her for longer periods of time.  She was up in her pony walker for a while today and it was awesome to see her upright.  When I asked her first thing this morning if she wanted to go in her pony she let out this very emphatic happy noise, she sure let me know the answer was yes!  She is getting so vocal and I love it! 

We had a very positive ACS consult (phew! can you believe it???!!!) on Monday at the house where they actually see the child.  Crazy idea eh?  Who would of thought that would be helpful ;)
We came away with an actual plan for Sophie and her communication needs and I am excited.  I will post more when we get all the pieces in place - soon. 

But in the meantime I had wanted to start working with some switches but all we have are her Jellybean switches that I purchased with nothing to attach them to.  I asked the therapists about an adapted mouse and where to purchase one.  Then, I was rooting around in her closet tonight to have a look at her jellybean switches and lo and behold I pull out an adapted mouse.  I didn't even know we had one!  It is a loaner from her therapy centre that must have arrived with some other equipment and got put away before I was able to look at it.

So I got it all set up and Sophie was able to play on the computer tonight.  She had a great time making some songs go and playing a couple games.  It is so rewarding for her to have the independance and we will be using it each day now that I know we have it!