Wednesday, 30 November 2011

Day Three of CME

It is hard to believe we are half way through our trip already. We woke up to snow flurries and our fingers crossed that it wouldn't get too bad and cause the 401 highway to be backed up. It didn't turn out to be too bad.

You can't really see the snow but it was starting to stick to the road. 
This was the lovely 401 traffic this afternoon! Good thing we are not on the highway for a long time
The first session of CME was typical Addison after not getting enough sleep. She cried for about 80 percent of it. Simona did exercises with Addison sitting on the corner of the table, sitting on a box like a genie, and standing with only support on her thighs and not her trunk. Simona is seeing Addison do things that she wasn't able to do at the beginning of the week. Now Addison isn't doing anything that she wasn't doing before but it is the small things that we are working on now that will eventually build up to the big steps we all hope to see. Like good head control and un assisted sitting to start.

Simona said in her 15 years of experience she has never met a child with as severe of damage as Addison with as much fight in her. Typically children with such severe damage typically don't have as much drive to get through the therapy. She looks forward to working with Addison and seeing the progress she makes. Does this mean Addison will walk one day...well no but it doesn't mean she wont. Know one knows that but Simona does feel we will make gains and take steps forward in whatever direction Addison is ready for. Basically the CME therapy is nothing short of a miracle. If all it does for Addison is make her head stronger and teach her awareness of her body so be it. When we walk away we will at least know we tried.
Also, we have talked to Simona and we are coming back to Toronto for CME therapy in May and then again in November(once again thanks to all who supported us and made that possible)
We started video taping the therapy this afternoon with instructions on how to do it at home. Of course it will take time to get used to but nothing we can't handle. Tyler needs to build us a special table which then we will have to find a spot for...I really think it is time for a new house.
We call this the genie
This if four point to side sitting
She is not a fan of this one it is called Forced Squatting
This is called Remote Control Sitting


On a lighter note we took Addison to Yorkdale Mall today to see Santa. We got her picture done. It was kind of funny, when we were walking up to Santa I put her wheel chair right in front of him and Santa was like no move her so she doesn't see me. He must be used to babies seeing him, getting scared and crying. I didn't really say anything but I was thinking....no way Addison loves the colour red, I am going to let her stare you down as much as she wants. She really didn't even notice him. He held her on his lap awkwardly I don't think he ever held a baby with high tone because he really seemed scared at how she was stiffening up. Quite entertaining for the minute it lasted.

I think Addison might be teething again. She is drooling a bit more then normal and when we went to the food court at the mall for lunch she screamed the entire time I tried to feed her. If you have never been to the Yorkdale Mall you don't know that it is filled with what seem to be very wealthy Moms and babies, business people and people dressed to the nines. I didn't see a stroller that was a regular brand and the babies had more brand names then I do(like really ugg boots for babies). So needless to say when we were sitting in the food court eating lunch with our child who came in a wheel chair, feeding her via a tube and screaming hysterically as I try to eat my lunch as if none of this was taking place I was just waiting for someone to say something snotty to us. It didn't happen although there was no lack of people staring. I do realize though that people are curious and totally respect that.

Before therapy this afternoon we drove around the neighborhood to look at the houses. Let us just say we found a few that we wouldn't mind living in!!



Addison hanging out in a booth while we had supper
After supper(which I must add this eating out business is not as fun as it sounds...it is getting very very old) we took Addison swimming which of course she loved.
We are hoping Addison will go to sleep soon(so far CME doesn't help with the sleeping) so we can watch survivor and get some sleep.

Tomorrow I start doing the CME which kind of makes me nervous but Simona is great and I am sure it will be fine!! We have decided we are just going to stay in the hotel all day tomorrow between therapy and in the evening, hopefully go to the pool twice and get caught up on all of Addison's other therapies that have been on the back burner since we got here.


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