Update Ayla

Hi everyone:)
Ayla is doing well. Last monday she got some new shoes at preschool. One of the PT assistants she works with made them all up for her. She can walk with them on...pretty well actually. It only took a day or two for her to get used to them and now she's walking all over the house. It's very hard not to want to stay right on top of her every second, but i don't want to feed any nervousness.
This past week i was in contact with her rhuematologist in Toronto. She put Ayla on a quicker taper for her steroids, so she'll be off them in about 6/7 weeks assuming her body responds okay. Her rhuematologist said that she still has some spots of thickening on her skin, but she isn't sure if they are "scarring" that will go away in time with therapy, or if it's the disease still full blown in her system. There isn't a way to know until she is off the steroid.
She is also going to be in contact with her lead rhuematologist at sick kids (she's there too) and see what his thoughts are. As well as get in touch with the bone clinic at sick kids to see if they want to see Ayla and also to see if they have any advice. They could do a bone density test but she said that they don't have enough "normal" 2 year olds bone density to accurately say how far Ayla's is off of normal, but she will see what they say.
She also is sending us for bloodwork in about 2 weeks (she just had done about 2 weeks ago) to test for some other markers of bone problems.
I told her this week about Ayla's allergy to corn, which is pretty severe. I also put her and our naturopath in contact and i'm hoping they can connect (i'm praying we didn't tick anyone off).
So right now i'm just waiting ot hear back. I haven't heard anything since wednesday, and it's hard not to be hounding them...so God willing i will hear something tomorrow.
God continues to teach us all patience among so many other things:) Waiting on doctors is not my strong suit:)
I am reading a book called "When Life is Hard" by James Macdonald. It's not a "how to" guide it's a book that is meant to help you see God's hand in all things. I'm only a bit of the way through and have done a lot of highlighting:) One thing that stood out to me, was thi:
"Fact:Pain is often a central part of God's purpose in this world. He allows and even causes pain in our lives. It's one of the tools He uses regularly to get stubborn sheep to greener pasture."
Also Psalm 34: 18-19, "The Lord is near to the brokenhearted and saves the crushed in spirit. Many are the afflictions of the righteous, but the Lord rescues them from them all."

That's all for now. Thanks for all the emails of support and prayer. It is still greatly appreciated so very much.
God Bless.
lacy