Ayla update 3-30-11

Happy Spring everyone!!! I apologize for it being so long since the last update. When i look back i think the last one i sent was on February 23! A lot has happened since then! As of yesterday Ayla's hairline fracture was cleared by her xray. It's all healed and so well that they can't even see where the break was, lots of new bone growth! Thank the Lord for that! Ayla has been walking on it since about 2 weeks into the break. She had a lot of pain those rist 2 weeks, but after that she was fine. March has been a month full of doctors appointments. Thankfully we have family that help:) Ayla had a bone mineral density test 2 weeks ago and also met with her rhuematologist the same day in London. The test went really well, very quick and painless. Ayla gets more and more brave and used to all this each time. Another thing to be thankful for. The rhuematologist was concerened with the pain Ayla was having in her jaw in Jan/Feb. She was upset that no one contacted her after i took her to our pediatrician multiple time. She wanted to have Ayla's MRI doen on that area also, as well as her legs, but only had a week to try and get it changed before the actual MRI...WHICH WAS FINALLY SCHEDULED! It's only been since november:) The actual reason for the MRI is for so that the report can get sent to the government to see if they can get approval to try Ayla on another drug. They can't actually see Ayla's disease on and MRI (only skin and muscle biopsy), so that part i'm a bit confused on. Other than that the rhuematologist said that she thought Ayla's skin felt "better" than last time. Which to me would mean that the injections we are doing are certainly helping... Ayla also saw the Endocrinologist a week after her Bone Mineral Density to go over the results. They said "normal" is -2 to +2. They is -1.8, so the low end of normal. If it's -2 or lower they medicate to try and force the bones to grow. Because she's within the normal range and she's been off steroids for a bit, they do'nt want to do the medication. They will do another BMD in a year and compare those ones to these and hope to see more improvment. But, if the fractures keep happening as they have been (3 in the last 9/10 months) they will need to try the medication. She also has grown 4.5cm in the last 6 months! Woohoo! Praise God! She's still super tiny and no growing much in weight, but anything is good. Ayla finally had her MRI last thursday. She was sedated and all went very well. It was an anastatist that we've seen before and are very fond of. He remembered us well and his resident was excellent and very good with children. It took quite a long time which is funny because she's so little...she was in there for almost 2 hours just for hips and jaw. When she came out she woke up fairly quickly and enjoyed some slushies and lots and lots of food. Like i said, yesterday she had her final xray on the most recent break and that is the final appointment this month! 7 in a month is too much and i'm glad it's not like that all the time! Physically she is still doing very well, with some limitations still. Someone pointed out to me recently, which is something we've thought about lots, "she won't be able to play sports or dance or those types of things will she??" Well, maybe not. But maybe. God has surprised us thus far with all that she's able to do despite the complete loss of mobility and muscle mass, joint rotation, 3 broken legs, chronic pain, etc, just over a year and a half ago. So maybe she won't and maybe she will. Ryan and I were both always into sports and so is Ezra, so if she can't it will be a bit foreign for us, but God will help us. Ayla loves music so maybe that's something we'll have to experiment with:) We will do our best for follow the lead of the Lord and what His plans are for our little family and our little girl. Ayla did not sleep well last night. She's not feeling right today either. She can't pin point or explain what is wrong. No fever, just fatigue and general irritability. Sometimes i can't help but think, "oh no, now what?" This is something i read just this morning: "Joshua’s life was unpredictable and full of unknowns much like yours and mine. Yet, he successfully resisted fear by keeping his focus on God rather than the events surrounding him. Just as God guided the Israelites through unknown territory, He will guide you and me, too. As He promises in Isaiah 43, when we come to a place we’ve never passed through before, God is always present to help us. “When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the LORD, your God, the Holy One of Israel, your Savior” (v.2-3a, NIV)." "Yet, he successfully resisted fear by keeping his focus on God rather than the events surrounding him," I will do my best to remember this each and every day. Thanks for all your thoughts and continued prayer! Lots of love and blessings! Lacy PS-Ryan has been seeking work basically since he's been on in December. So far, there are many things pulling us in many directions. We are trying to find the right path and right now more things keep coming up and not one more concrete than another. If you wouldn't mind sending up a prayer for work for Ryan, it would be ever so appreciated. PSS- If you remember a while ago, i was talking about a little girl the same age as Ayla running and playing at the McDonalds playground?? Well this past weekend my nieces birthday was at a McDonalds. guess what?! Ayla was able to climb into the lower tunnel to the first slide and go down by herself:) Praise God for the little things! You should have seen the smile on her face.