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

Ayla-jaw pain

*Ayla started having pain and swelling that was virtually uncontrolled on friday. All of her docs are on holiday and we were struggling to find one. Here is the update* By the grace of God (and being blessed with a truly great friend...many actually) we were able to get Ayla in to see a pediatrician today. Someone who hasn't seen Ayla before but none the less is pretty confident that what Ayla has in her jaw is a flare up of her disease (EF). Hopefully when her specialist is back on the 13th we will be able to get in touch with her quickly. The doc today put her on heavy steroids (prendisone that she was on before)...with tears in my eyes i agree'd it was the only way for right now. I'm thankful that the drug works so well but i truly despise it...it does so many bad things in exchange for good. The Lord knows what she needs so i trust it will all be okay and whatever happens He will guide us... So the steroids are for a week including a taper off. So it's not long, just very large doses. She can only take tylenol for pain which doesn't really do much, but hopefully soon the pain will subside. She is very restless, cranky, tired, sad, etc. She needs a good nights sleep for sure at this point:) And so do I:) I need to say as frustrated as i get and weary, God is always faithful and i'm thankful that there is always a morning and everything is seen in a different light. God has really given me some major patience these last 2 days with very little sleep, a sick girl, a missed husband, a busy boy, and all else that comes with this life. I'm thankful for that (and i think the kids are too). Thank you for thinking of us. Thank you for praying for us. Thank you to listening to me vent. Thank you for loving us all. Lacy PS i'll send something out in a week or so and let you all know how she's doing. PSS Ryan is about a little more than half way i think out to Alberta.