4-27-11

Happy rain week everyone! Happy spring!
I hope everyone had a great Easter. The kids and I attended a great Good friday service. Four churches in the area did a large combined service that the kids and I really anjoyed. Then we went to Ryan's parents in Sarnia and spent Easter weekend with them. The kids had fun decorating eggs and egg hunting and Ezra even played his first game of street hockey at their house! He was so excited! (Too all my American family...street hockey is one of Canada's favorite things...you know, other than ice hockey:) ). Ryan has found a church out west that an Alliance Church like we attend here. He really enoys it and for that we are grateful.
Anyways, onto our girl. Ayla's jaw pain is mostly gone. Once in a while the last week or so, she will say it hurts. When i ask her she says it hurts a little bit all the time. It still bothers her lots when i brush the side of her mouth that the inflammation was in. We still haven't talked to her specialists (even though they were supposed to back from holidays on April 14th, they still aren't back). But the pediatrician that she saw the 2 times at the hospital really thinks it was a flare up of her Eosinophylac Facciitis and a completely seperate viral infection that was causing her fevers. I'm very frustrated with her care team right now...they have left no back ups in place at all. I guess it's God will, so we have to accept that and hopefully will get this figured out soon.
Her PT's and OT's are still seeing some inflammation even though she's been done the steroids for over a week now. They are also thinking that she's lost weight...which could very well be b/c she could hardly eat anything for those 2 weeks unless it was mush. So she's either grown taller and seems skinnier or the weight just isn't on. She is very very small, as many of you know. It's a mild concern of her team (if in fact we ever talk to them again). Her OT is going to start weighing her on the same scale every thursday while she's at school. That way it's a consistent scale. When she is weighed at docs/hospital it is never the same scale and they never seems to be even close to eachother. One week she weighed in at 10.6kgs and 3 days later 11.4 and then 2 days later 11kgs...so someones scale is wrong:) She eats like a crazy person so if she doesn't start growing tall or wide soon...i'm not sure what is going on!
Anyways, we are meeting with her OT's and PT's and her preschool teachers this week to assess what the next step is for her. She's come so far, thanks be to God. But we aren't sure if things are at a stand still now as far as her ability/development...so we will talk about that.
We have been outside lots already this year! In between showers:) This year Ayla is able to walk through the grass on uneven ground pretty well! If you don't remember, even in the fall last year Ayla couldn't walk in grass b/c of the depth and uneveness. She's even climbing the little ladder up the slide in the backyard without my help (little booger, this year i'm going to have to keep a close eye on her, we don't want anymore stunts that cause broken legs this summer!) So she's trusting herself more and we are trusting her more. At some point you have to find a balance in the protection and letting her be a little girl. WE have to trust God's protection and will over ours.
That is all for now! Enjoy the sunshine in between the rain drops!
Blessings on you all!
Lacy