Hi everyone:)
Ayla is doing well. Last monday she got some new shoes at preschool. One of the PT assistants she works with made them all up for her. She can walk with them on...pretty well actually. It only took a day or two for her to get used to them and now she's walking all over the house. It's very hard not to want to stay right on top of her every second, but i don't want to feed any nervousness.
This past week i was in contact with her rhuematologist in Toronto. She put Ayla on a quicker taper for her steroids, so she'll be off them in about 6/7 weeks assuming her body responds okay. Her rhuematologist said that she still has some spots of thickening on her skin, but she isn't sure if they are "scarring" that will go away in time with therapy, or if it's the disease still full blown in her system. There isn't a way to know until she is off the steroid.
She is also going to be in contact with her lead rhuematologist at sick kids (she's there too) and see what his thoughts are. As well as get in touch with the bone clinic at sick kids to see if they want to see Ayla and also to see if they have any advice. They could do a bone density test but she said that they don't have enough "normal" 2 year olds bone density to accurately say how far Ayla's is off of normal, but she will see what they say.
She also is sending us for bloodwork in about 2 weeks (she just had done about 2 weeks ago) to test for some other markers of bone problems.
I told her this week about Ayla's allergy to corn, which is pretty severe. I also put her and our naturopath in contact and i'm hoping they can connect (i'm praying we didn't tick anyone off).
So right now i'm just waiting ot hear back. I haven't heard anything since wednesday, and it's hard not to be hounding them...so God willing i will hear something tomorrow.
God continues to teach us all patience among so many other things:) Waiting on doctors is not my strong suit:)
I am reading a book called "When Life is Hard" by James Macdonald. It's not a "how to" guide it's a book that is meant to help you see God's hand in all things. I'm only a bit of the way through and have done a lot of highlighting:) One thing that stood out to me, was thi:
"Fact:Pain is often a central part of God's purpose in this world. He allows and even causes pain in our lives. It's one of the tools He uses regularly to get stubborn sheep to greener pasture."
Also Psalm 34: 18-19, "The Lord is near to the brokenhearted and saves the crushed in spirit. Many are the afflictions of the righteous, but the Lord rescues them from them all."
That's all for now. Thanks for all the emails of support and prayer. It is still greatly appreciated so very much.
God Bless.
lacy
Wednesday, August 25, 2010
Sunday, August 15, 2010
Ayla got her purple cast on
Ayla got her cast on early this morning. Praise God for good friends that took care of Ezra today so Ryan, Ayla, and I could come home and have a nap:)
She is getting so very brave. No tears until they started taking off the temp cast for the new one. And when it was done, it was done. The doc was nice, it was fairly quick and it's PURPLE:) We brought our own casting from home (we had left over from the last time) b/c they only had white. She loves her purple cast and is getting around very well. She has even stood holding 2 hands on the bed. The doc said she can weight bare on it...so we will talk to her PT's tomorrow and see what the plan is. She still haven't been cleared really from the femur break so they haven't been doing much walking/mobility at preschool.
The doc today said, "she has osteoporosis." Now i'm not sure if he's assuming that based on what her bones look like on xray, or if that is what is going on b/c of the meds. I emailed her specialist (rheumatologist) today and explained to her my concerns of this continuing. How much worse can her bones get? Her teeth are also a mess. These meds are really doing a number on her, even with all the supplements we give her to restore what the meds drain. We are praying that some how we can figure out a way to get her body stronger again. Inside and out.
She's still very small. She still weighs less now than she did this time last year, right before she got sick.
It's all very overwhelming at times. Most times it's just "a day in the life of what God has for us." We try and make the most of it.
She is such a special girl.
I wanted to tell you all how smart she is:) We often think of all the stuff she "can't" do. But last week she had her assesment at preschool (i'm waiting for the write up). Most of her abilities, other than gross motor, range from a 3 year old to 4 and a half! Her fine motor are that of a 4 year old and so is her cognitive among other things. Her teacher was so happy to tell me all this and can't wait for me to see the the actual assesment. She's little miss smarty pants. So Praise God for so many other things that he has blessed us all with the we tend to overlook. Thanks for my smarty pants girl:)
That's all for now.
Thanks for the prayers.
God bless you all:)
Lacy
She is getting so very brave. No tears until they started taking off the temp cast for the new one. And when it was done, it was done. The doc was nice, it was fairly quick and it's PURPLE:) We brought our own casting from home (we had left over from the last time) b/c they only had white. She loves her purple cast and is getting around very well. She has even stood holding 2 hands on the bed. The doc said she can weight bare on it...so we will talk to her PT's tomorrow and see what the plan is. She still haven't been cleared really from the femur break so they haven't been doing much walking/mobility at preschool.
The doc today said, "she has osteoporosis." Now i'm not sure if he's assuming that based on what her bones look like on xray, or if that is what is going on b/c of the meds. I emailed her specialist (rheumatologist) today and explained to her my concerns of this continuing. How much worse can her bones get? Her teeth are also a mess. These meds are really doing a number on her, even with all the supplements we give her to restore what the meds drain. We are praying that some how we can figure out a way to get her body stronger again. Inside and out.
She's still very small. She still weighs less now than she did this time last year, right before she got sick.
It's all very overwhelming at times. Most times it's just "a day in the life of what God has for us." We try and make the most of it.
She is such a special girl.
I wanted to tell you all how smart she is:) We often think of all the stuff she "can't" do. But last week she had her assesment at preschool (i'm waiting for the write up). Most of her abilities, other than gross motor, range from a 3 year old to 4 and a half! Her fine motor are that of a 4 year old and so is her cognitive among other things. Her teacher was so happy to tell me all this and can't wait for me to see the the actual assesment. She's little miss smarty pants. So Praise God for so many other things that he has blessed us all with the we tend to overlook. Thanks for my smarty pants girl:)
That's all for now.
Thanks for the prayers.
God bless you all:)
Lacy
Another broken bone
Yesterday Ayla lost her balance while standing holding onto a chair and bumped her foot/ankle on the chair going down. We waited until today b/c it didn't seem like it bothered her when we touched it but she wouldn't walk on it. I took her to ER this afternoon and yes, she "buckle fractured" her left (not right like last time) tibia, right above her ankle. Tomorrow we will be going to the fracture clinic in the morning to get it casted...
Lacy
Lacy
Friday, August 6, 2010
Ayla
Hi everyone! Sorry i haven't sent out an update in a while.
Ayla is doing very well with her cast off. I'm about to have a heart attack on a daily basis b/c she's moving and groving like crazy.
I keep praying for the Lord to heal her and make her stronger every day and for Him to keep her safe, while she's being a maniac AND WALKING HOLDING MY HANDS ALREADY AND PULLING HERSELF UP! She's also cruising holding onto things, but i stay right with her with my hands behind her just in case. It's hard b/c i am will not tell her that she can't walk. She knows that she can and she wants to and i'm not taking that away so it's my job to make sure she's safe while doing it. She's loving being able to swim. Our neighbors are kind enough to let us come over nearly every day:) I think that's helping so much with strength and flexiblity.
The orthopedic surgeons office called and rescheduled her next xray/follow up for the 30th instead of the 24th. It's sort of frustrating but we are hoping he'll be able to see whether her bones are stronger now than they were when the break happened since she's on less medication.
Also, September 3rd is when her dental surgery is scheduled for. Between now and then we have to go to the hospital 4 times and the dentists office once. I wish they could schedule all the hospital visit for the same day...but that's impossible. Some are for her leg and others are for her teeth. We also have to do bloodwork in the next few days (which is always terrible). We have to take her every 6 weeks and it's always pre-empted by lots of prayer that they get blood in one poke:)
Last weekend was nice, we got some extra time with Ryan b/c of the long weekend. Which we all needed:)
There is something i've been meaning to share and keep forgetting. A couple weeks ago at one of Ezra's t-ball practices, there was a young woman there walking her dog watching the kids play. She came over and asked me what happened to Ayla (this was with her cast still on). I told her. And she said, "God is good and whatever is happening it's for His good and his Glory. Nothing is in vain. Would it be alright if i prayed for her?" I said, "yes of course, thank you so much." Thinking she would go home and say a prayer for Ayla. Right then she put her hand on Ayla and prayed. This to me is always amazing and inspires me to do the same for people. I don't if you remember, but a similar thing happened with 'Gabby the Elf' at Christimas time, where she prayed right then for our family. God is so good and puts people right in front of you for so many unknown reasons.
This week i had the chance to talk to some friends, when Ayla wasn't there or near enough to hear, about how people are inspired or touch or intregued by what is is that we have that keeps us from falling into a million pieces. These are people of faith and some who have absolutely no faith at all and some who are looking for find something but they aren't sure what. Ryan and i talked and that makes all this worth it. If people can see that God is still good and even more good when you are suffering and that makes them draw nearer to him, it's all worth it. None of it was for nothing if only one person comes to know the Lord through this or draws closer because of what they have seen or heard.
The only way we are still carrying on and looking forward and not back (although some days are harder than others) is because of God. We could have fallen to bitterness and resentment and misery long ago...but why? God is good. Look at His blessings, look at the people He's surrounded us with, look at the miracles He's done, it's so obvious He is here if you open your eyes to see and your ears to hear.
Anyways, Jesus is the one who suffered for us. So we don't have to suffer but can find joy and hope in all things. As crazy as some people may think that is, IT IS THE WAY!
God Bless you all! And thanks so much once again!
Lacy
Ayla is doing very well with her cast off. I'm about to have a heart attack on a daily basis b/c she's moving and groving like crazy.
I keep praying for the Lord to heal her and make her stronger every day and for Him to keep her safe, while she's being a maniac AND WALKING HOLDING MY HANDS ALREADY AND PULLING HERSELF UP! She's also cruising holding onto things, but i stay right with her with my hands behind her just in case. It's hard b/c i am will not tell her that she can't walk. She knows that she can and she wants to and i'm not taking that away so it's my job to make sure she's safe while doing it. She's loving being able to swim. Our neighbors are kind enough to let us come over nearly every day:) I think that's helping so much with strength and flexiblity.
The orthopedic surgeons office called and rescheduled her next xray/follow up for the 30th instead of the 24th. It's sort of frustrating but we are hoping he'll be able to see whether her bones are stronger now than they were when the break happened since she's on less medication.
Also, September 3rd is when her dental surgery is scheduled for. Between now and then we have to go to the hospital 4 times and the dentists office once. I wish they could schedule all the hospital visit for the same day...but that's impossible. Some are for her leg and others are for her teeth. We also have to do bloodwork in the next few days (which is always terrible). We have to take her every 6 weeks and it's always pre-empted by lots of prayer that they get blood in one poke:)
Last weekend was nice, we got some extra time with Ryan b/c of the long weekend. Which we all needed:)
There is something i've been meaning to share and keep forgetting. A couple weeks ago at one of Ezra's t-ball practices, there was a young woman there walking her dog watching the kids play. She came over and asked me what happened to Ayla (this was with her cast still on). I told her. And she said, "God is good and whatever is happening it's for His good and his Glory. Nothing is in vain. Would it be alright if i prayed for her?" I said, "yes of course, thank you so much." Thinking she would go home and say a prayer for Ayla. Right then she put her hand on Ayla and prayed. This to me is always amazing and inspires me to do the same for people. I don't if you remember, but a similar thing happened with 'Gabby the Elf' at Christimas time, where she prayed right then for our family. God is so good and puts people right in front of you for so many unknown reasons.
This week i had the chance to talk to some friends, when Ayla wasn't there or near enough to hear, about how people are inspired or touch or intregued by what is is that we have that keeps us from falling into a million pieces. These are people of faith and some who have absolutely no faith at all and some who are looking for find something but they aren't sure what. Ryan and i talked and that makes all this worth it. If people can see that God is still good and even more good when you are suffering and that makes them draw nearer to him, it's all worth it. None of it was for nothing if only one person comes to know the Lord through this or draws closer because of what they have seen or heard.
The only way we are still carrying on and looking forward and not back (although some days are harder than others) is because of God. We could have fallen to bitterness and resentment and misery long ago...but why? God is good. Look at His blessings, look at the people He's surrounded us with, look at the miracles He's done, it's so obvious He is here if you open your eyes to see and your ears to hear.
Anyways, Jesus is the one who suffered for us. So we don't have to suffer but can find joy and hope in all things. As crazy as some people may think that is, IT IS THE WAY!
God Bless you all! And thanks so much once again!
Lacy
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