So we are back from London.
The appt went fine. Nothing new really.
The Rhuem, intake person at Bloorview, and our PT have been in contact. The rhuematologist said she would suggest Ayla go there. They have an opening as early as next month. Bloorview also agrees it would be good for Ayla. They will be contacting us this week.
We spoke to the Rhuem about Ayla's emotional/mental difficulties and she agree's that it's not an easy decision whatever we decide to do, but can't really offer advice.
Again, they know nothing of this and have no idea what the recovery time is or if it will come, but they are hoping.
She told us that Ayla would have access to just about every kind of therapy there is while there. That said, only 1 parent can be there. And there is a commitment of 4weeks-3months and depending on how she's doing possibly longer. (If she's doing very well they will keep her and make even more progress). That means our family being apart for a very long time...with another young one at home, who's had mom around for his whole life.
There are so many other determining factors. I don't know how we are ever going to decide and be at peace with the decision. We are constantly praying for God's guidance and direction...but every time we turn around something pushes us back the opposite way...ugh
Ayla has been through so much already and has Post Traumatic Stress...

-this could totally make it worse. She could totally shut down for them or they could pull her out of her funk.
-she will be away from home with only mommy's attention for a very long time, a hard transition when we get home (is it worth ANOTHER change?)
-we have no child care for Ezra while i'm gone
-Ezra has been through so much as well...should we really be away for that long???
-is slow and easy better than quick and hard??

And there are a number of other factors. None of which seem to be swaying us one way or another.
Sorry this is all so very jumbled. I just have a mess going on in my head. On top of this Ayla is crying all day and waking at night due to the poop thing...it no longer hurts, but now she's scared. BECAUSE SHE NEEDS MORE TO BE AFRAID OF RIGHT?!?! Sorry for too much information.

Anyways, they are continuing to wean down her steroid meds and are hoping to see a difference in her fascia (skin tightness and stiffness) in the next couple of weeks. They are also putting out a world wide announcment on the Rhuematology forums hoping they can find another family to put us in contact with who has been through this with a young child. Right now they only know of 3 (including Ayla) from sickkids in Toronto.

That's all for now.