Down, but not out.

Today I felt like I was going to implode.  It was like I was watching everything going on from some other space, it couldn't be real.

We had our appointment today and I left feeling devastated.  Driving while sobbing is not the best thing to do, take my word for it.

I feel that I have let Sophie down, that it shouldn't be this hard to let a girl speak what she is thinking.  That all the work we did over the last year has gone unrecognized.  The only saving grace is that she has an OT, SLP and vision specialist that believe in her as much as I do. They were all as shocked as I was when we left the consulation virtually empty handed.

Even though Sophie can't tell me she loves me and that she believes in me, I know she does, which is why I will keep fighting for what she deserves.  She will be ready for school in a year's time even though her next waitlist is over a year.  A year.  I will keep finding blogs and websites and new ideas that will keep allowing her to learn like she wants to.  Thank God we bought the Ipad when we did and I didn't wait for this appt.  They didn't even give us any ideas for the Ipad that we already own, let alone telling us she would be a candidate to use one of theirs if we didn't.  Ugh.

She will have a voice in this world. 
I will not fail her, I guess we are just on a continued journey of proving that she can do it.

I feel like I can't convey anything I want to just yet, I need to get my thoughts together and start tomorrow, a new day.

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.  :)

The Doors of Paris (and a few other things thrown in)

I became a little obsessed with taking photographs of the different doors of Paris.  You can walk 6 feet anywhere in Paris and you will see another beautiful form of door.  The colours, woods, metals and shapes were so varied that I found myself searching out more and more beautiful ones.

 Sigh.  How cute are these.

This was the only way to the washroom in a little restaurant we ate dinner at one night.  It is hard to tell in the photo but it is extremely steep!

Paris part 2

Paris was an incredible place to visit again, we enjoyed the cafe's and museums and window shopping down the little cobble stone streets.  We got lost a few times a day (when I wasn't on map duty, just sayin')

These pictures are from Versailles.  There was a massive downpour as we waited in line for 2 hours with about a hundred thousand other tourists (maybe a slight exaggeration).  Luckily we had packed our umbrellas.  The palace is enormous, it was basically it's own city, Louis liked to keep an eye on his peeps.  The gardens were gorgeous, but it was hard to enjoy the palace inside as we were swept along with the sea of other tourists in each room.

Back in the city of Paris, this is the original metro of the one I photographed in Montreal.

Saint Chapelle.  The most incredible gothic church you will ever see. Ever.  There are 2/3 of the original stained glass windows from the 13th century.

The Cluny museum is all things middle ages.  It houses the Lady and the Unicorn Tapestries which are absolutely stunning and one of my favourite things in Paris.  I had seen them many years ago (like 25) and it was awesome to see them again.

The real reason I go to Paris. It was very easy to fall into the continental breakfast routine, in fact it was perfect for breakfast, lunch and before bedtime snack.  Luckily we walked so much the massive amounts of grams of fat may have evened out with the calories I burned.  That's what I have convinced myself of anyway.

 

After Paris we took the chunnel train to London.  It was nice to just sit and relax as we hadn't done that in 5 days.  We got to relax for about 2 hours and then it was on to part two of our journey.

Paris in pictures

June has been a blur.

I am going to try to catch up with my blogging but my intentions may be better than what will actually happen.  Jason attended two conferences this month.  One in France and one in England.  I was home with Lucas and Sophie for the first week and then I joined him abroad for the second week.

These are some of the pics from my first few days in Paris.  I had not been for many years so it was a nice getaway.

More to come...