Ayla 5-30-11

Good sunny day to you all! Hopefully everyone is drying out from the rain! The kids and I were in New York visiting my family last week and the weather was really good other than one day. Then yesterday i'm driving home and WHAM! humungo storm and a very creepy sky! Thankfully we got home safely just after the rain had stopped in time for me to unpack the car.
We also had Ryan home for a visit the 18-23rd. We had a nice time having him here. It was all great except for when he arrived back in Calgary and the keys to his truck were here on the key hook. AHHHH! So i had to overnight the keys out to him and a very kind co worker picked him up at the airport and then brought him back. God is good....even when your husband forgets his car keys in another province!
Anyways, onto Ayla. Shortly after the last update i had a meeting with Ayla's care team here at her therapy center/preschool. The first thing we talked about was...if she makes friends or plays. Ryan and i noticed a while ago, she doesn't play with other kids. Talk to other kids. Engage in any sort of story telling or play unless she is attached to an adult. Whether its me, Ryan, a teacher, or Ezra. It was about an hour and a half of trying to figure out what was wrong and what we all could do to encourage her. There are many other factors that makes this very evident as well...but too many to list. Basically they said that developmentally around 18 months to 30 months is when children begin to play together and learn "friendship" skills. That was the time Ayla was very sick. She couldn't play and was confined and basically learned that she was to be afraid or stay away from other kids. Fear?? One thing that still rings in my head was, "she doesn't seem to have any joy." Which Ryan and i knew. We gotta work really hard to get a smile, none the less a laugh. But it's really hard to hear someone else say that. What part is her personality?? Who knows. I keep reminding myself that she is who God made her. Fearful, shy, reserved, whatever. If she changes then that's only God's will. Not ours.
There were a few people in our small group i shared this with right after (and family). And low and behold, the next day she was in school when i went to pick her up, the teacher said, "we saw rainbows today!! She was playing with the other kids and talking and telling everyone all about her new tadpole!" (His name is Ting Ling...he's an Amercian Toad...just like me. Well the American part. Not the toad.) She even told a boy "no" when he pulled her hair instead of crying and running for a teacher. She sang during circle time and pretended to make cookies with other children! Praise the Lord. He is soooo good.
It's so hard for us to know how much to protect her...so i'm sure it's hard for her to know how much to protect herself. But sometimes you just gotta "let go and let God..." Like all the time. It's usually way better than what we want anyways.
Attached is a picture of Ayla and Ryan and Ezra and Ayla. Lots of smiles and joy:)
God Bless.
Lacy

5-11-11

Greetings all of our hopefully sun kissed friends! I hope everyone is enjoying a few clear sunny days of spring. We've had quite a few in a row here! Which means the grass is growing and the flowers are beautiful!
Earlier this week i was feeling very defeated by my weed trimmer...actually trimmers. I went out to mow on a beautiful sunny day and my electric trimmer would not work. So i got out Ryan's high power John Deere Gas power trimmer and realized i have no clue how to fill it with gas and oil. A neighbor helped me figure it out. Then i realized i had no idea how to start it. Another neighbor helped me start it. After about 5 minutes, Ezra needed me, so i shut it off. Then i could NOT get it restarted! My neigbor came over once again...and i'm quite sure i flooded the engine. So he had a look at my electric one and low and behold, it started! Anyways, i wanted to share that with you b/c i was feeling very frustrated and angry...at the weed trimmer. Right?? Wrong! It's just one of those things that sends us over the edge. Thankfully i realized it before those trimmers got the best of me and sent me into tears.

Anyways, onto Ayla. She is doing well. I did finally hear from her specialist shortly after i sent the last update a few weeks ago. Apparently, she WASN'T on holiday. Her secretary was. When i called the secondary secretary, she never answered the phone and her voice mail box was constantly full. Apparently she "knew" about the jaw pain but thought it was just mild and didn't contact us. Finally when her secretary came back, she called to schedule an appointment for us in July and i said, "i really just need to talk to her doctor right now." A few minutes later the doc phoned us. After a lot of back and forth and letting her know how very frustrated i was and how serious the "mild" jaw pain was, she said, "Well you know how very rare this disease is, so it's hard for us to know whether it was a flare up or not. I'm not really sure what we could do." Long story short, she sent us a requisition for blood work, which we had done last week. She's also supposed to send a dictacted letter as to what her instructions are to a care provider if this happens again. This included ultrasound of the area and lots of lab work. I have yet to recieve it...hopefully it's coming.

They are still waiting for her MRI's to be read at Sick Kids in order to send them off for government approval for the other medication for Ayla. Which we were very much undecided we would go with, but if the jaw stuff is indeed a flare up, maybe Ayla needs something stronger. This would be a monthly injection done at the doctor on top of the injections we give at home.
Ayla is doing well. I meet with her "team" at Therapy Center this week and we are going to talk about what the next steps are for her physically.

This week Ayla was able to ride her trike down our driveway (slight decline)! I was so proud of her! You should have seen the grin on that face!

Some things are still very evident to where she falls behind. Like when kids are running at the playground, she tries desperately to keep up, but just can't. I can tell she's getting frustrated. By the time she catches up, they are onto something else. And as i'm typing this i'm hoping that this doesn't become a metaphor for her life, always trying to catch up. God's plan is the best plan...and he has a plan for good. So i'm sure she is now and will always be right where He wants her. It's up to us (the people that love her) and as she grows, herself, to rely on someone much more powerful than ourselves, to put her where she needs to be.
I guess that is relavant to all of us in our lives. To embrace the plan God has for us and to do good with it. For He is good.

I had the opportunity this past week to speak at a womens event, along with 5 other great women, at our church to 150 mothers, daughter, sisters...women. I was so happy to share some of what we have learned and now "treasure" (we were to share the treasures of our hearts) through our journey thus far with Miss Ayla:) It was a very blessed night and though i was pretty nervous, i think it went well. I also had a great opportunity to help with a dramatic reading at our church at the 2 services on Mothers Day. Four women, with different mothering journey's, shared "Before I was a Mother..." Some of you may recognize this from a "Forward" on the internet, but it was rewritten to be specific to the women reading. Once again...I was very nervous but so happy to be used.
God is so good and i'm so glad that i could share with others to encourage, inspire, and lift up.

Ryan is still away in Calgary. He is able to come home for a short visit next week. We will be so happy to see him. Ezra's been struggling a bit with him being away so it is very timely. He's doing the sleep walking thing he was doing last year and stuttering asking for Ryan to come and snuggle...
Ryan is doing well out there and has connected with a few people at his work and at the Alliance Church in High River and we are holding up okay too. Thanks be to God.

That's all for now! Enjoy the sunshine...and your weed trimmers!

Lots of love you all,
Lacy