Hi to all my sweaty Ontario and New York friends and family. Ryan just informed me that while yesterday it felt like a very literal (47) 117 degrees, this morning he went to work in Calgary with a sweater on at a balming (10)...yes, you may all throw things at him the next time you see him. Especially after he took a picture of his thermometer and sent it to me, i'm sure chuckling. That said we have been keeping cool, enjoying our central air and the neighbors pool. (Forgive me but it took me a few days to finish this update...)
So what's new from the last update...? Ayla is doing well. She's gaining some strength for sure. She loves to hang off the grocery cart now...which i'm thankful for, BUT IT ISN'T VERY CONVENIENT! They had a little scare a week or 2 ago at school. She was jumping on a little trampoline and she was doing very well so her OT allowed her to jump just rest her hands against Ayla's...well, i think Ayla thought it was a big trampoline and she flopped down and banged her head. She cried a bit but i think her OT must have been almost in tears, b/c when she was telling me about it i thought she was going to lose it. They see her as a little glass girl sometimes. Even a friend of ours was with us at the park and Ayla was going down a narrow set of stairs with railings on either side, jumping and swinging down and i think her heart skipped a beat many times. It's so hard to rest...and know that God is watching her every move protecting her, b/c of what has happened to her. BUT HE IS THERE! And she is getting stronger and braver and bigger every day because of Him.
Recently we saw a few people we hadn't seen for over a year. We happened to be at a childrens play place. They saw Ayla and were so excited and surprised to see her walking. They asked me how long she had been walking. I had to think...for a long time i got hung up on how long it had been since she walked...since she moved even. I explained we had some bumps in the road, but she has been walking for..... almost a year! Time flies! It suprised me to think about it because really, day to day just becomes how it is when you don't know what's going to happen next (which i guess we never really do). We just became thankful for each day and the progress and then when i ran into someone who was so shocked i went, "oh. Well yeah...she's walking." So matter of fact. I don't want to take anything for granted. Nothing. We have been so blessed by the many miracles that have happened to Ayla and to our family. I never want to forget them or become so matter of fact. While typing this, i'm thinking that matter of fact thinking almost might come from trusting the Lord. Learning to trust that He has a plan for Ayla and that His plan was for her to walk again and if it wasn't, then He would help us deal with that too. Peace in whatever situation. Knowing that God will provide for every phsycial and emotional need that we have. I think most people have a head knowledge of that...but to actually know it...feel it...see it makes it so much more...POWERFUL. So yes, our girl has been walking for almost a year! Praise God!
A few weeks ago i took Ayla to see her Rhuematologist. She gained some weight. She's finally bigger than she was almost 2 years ago when she got sick! Praise the Lord for that! A growing girl! They are still trying to work out the details on an experimental drug for Ayla. It doesn't sound like she's "sick enough" for the govt to approve it short of doing another skin and muscle biopsy (which was how she was finally diagnosed), which is not going to happen. So the docs in London and Toronto are talking about what to do. They could just request it from the pharmacudical company...they are supposed to call us when we know. Until then we pray about whether or not we should even try it. It would be 3 injections in the hospital in 6 weeks (she said it would have to be London) and then 1 a month in a hopsital after that. It all has to be done in a hosptial b/c they have never used this on a child her age before or for this disease. I will let you know more when we know more.
Two weeks ago i took Ayla for a cleaning and check up at the dentist. We talked about the jaw pain she was continueing to have on and off. We spoken with her about it before and she couldn't find anything wrong. During the check up she noticed the molar in the spot where Ayla's pain is "around" was wiggling. She did an panoramic xray (which Ayla did totally awesome with) and low and behold that tooth was dead. She wanted to remove it right away but it would have to be done in a hospital. So that friday Ayla had a pre op consult at the hospital and surgery 6am Monday. They removed the tooth and did some more xrays. They could find nothing wrong with the tooth or any reason for it to be dead so they sent it off the pathology to be checked out. The rest of her mouth was fine but it looks like there may be some issues with her adult teeth. The dentist said it could be genetic or because of the heavy steroid therapy when she was so young that it inhibited the formation of some of her adult teeth (which they should be able to see on xrays at this point). We will deal with that down the road. The surgery went fine. She always comes out so great ready for her blue slushy:) She is getting to be such a trooper. She just knows the routine now and goes with the flow. They aren't totally sure if this has been what's causing on the pain but we are hopeful that it is.
This week i had to give Ayla's injection alone. My little man is away with his Nana and Papa this week. She did okay...much better than i anticipated.
Ryan still had not heard about work here. So he continues to stay out there. He will be home for a week visiting the begining of August. It's been over 2 months now since the kids have seen him. We all need this...especially them. Thanks for your continued prayers for his work.
I guess that's all for now. I hope you all are enjoying your summers and keeping cool.
Oh! And i wanted to add, this is big: AYLA MADE A FRIEND AT SCHOOL! Someone she actually plays with! I went early to get her today and was watching her on the playground. They were running and laughing and playing TOGETHER! I was so happy! And she was so happy to tell me about her! And when they said goodbye, they even gave eachother a kiss:) It was so cool to see that she was having fun with another kid! Praise God for that answer to prayer!
Lots of Love and blessings!
Lacy
PS I read this in a devotion today and wanted to share it with you all:
"...she had something better than a life without trials or sickness. She had the companionship of Christ and the assurance of His strength and enabling grace."
http://devotions.proverbs31.org/2011/07/perfect-weakness.html
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