Ayla went back to preschool this morning:) While not happy at first, she had a very fun morning and was happy the whole time:) She even made me a little craft. She has to spend preschool in her wheel chair to protect her from the other kids which i was nervous about...her being singled out. But i guess it was okay:)
I had an appt for Ayla this morning about dental work. She will need extensive work. She will be put under on Sept 3 to have the work done. Please pray for it to go well and for God to comfort her once again as she's in the hospital.
She will have another xray next WED to make sure the brace/cast is holding the bone well and healing is taking place. I know the Lord can do another miracle in her and heal her sooner than anyone can guess...just like "they" thought she might possibily never walk again...and 6 weeks later....WALKING. The Lord is in control and He is watching over our girl...
I have my first appt with the social worker on Wednesday. Pray that God can give our family some insight and help through this, as i know he can and is.
We are once again (it's never ended really) surrounded by some fantastic people...all blessing us in many ways in Christs name. We are very thankful and can't wait to spread those blessings onto others.
God Bless:)
Lacy
Monday, June 28, 2010
Wednesday, June 23, 2010
Ayla 6-23-10
Hi everyone. Ayla is doing alright. Her moods change quickly through out the day...i can't imagine how frustrating it must be for her. But she will say "this leg walk and this one broken, i walk soon). We went for xrays this mornign and the brace/cast hybrid is holding it in place fine and we'll go back in 2 weeks for another follow up. Thank God it's holding properly. We had her in this morning also for some alterations on her cast/brace. We had the other legs put on (not a cast) but the foam part (i'll have to post a pic) just b/c the brace was twisting and we didn't want it to hurt her leg more. So while it's good it will hold it more steady...it's wayyyy more difficult to change her and dress her. It was before, but now more so. Luckily i tried it there so he modified it a bit and it made it a bit easier. She fights with me any time it's time to get dressed, sometimes a very long battle. Everything is really more challenging now that it even was before b/c she only has limited movement in her leg. Like she can't sit at a 90 degree angle, which means she can't sit on the coutner and help me cook, which she used to do every night since she got sick and just became something fun we both love. We got her a new wheel chair b/c the other one was nearly impossible to get in and out of my car. This one is a bit small which is nice. She will be back at preschool next week (monday) and hopefully that will help some. She isn't sleeping well at night at all, awake 3-5 times. The social worker came out monday and we are going to get some help physically and emotionally for all of us. Praise God for that. Ezra has been fine this week. Ryan's parents have stayed down to help which we are all so greatful for. I'm not sure how i could keep it all together without their help. Anyways, that's all for now. Just a quick update so you all know what's going on. Thanks for all of you for praying and supporting us.
Saturday, June 19, 2010
home now
Hi Everyone. We are home now. We got home around 7 or so.
Ayla got her one of a kind prototype never been made before brace/cast made by someone awesome in Windsor:)
We got it all fitted and adjusted around 1/2 and then we had to go back to the hospital to see the Paediatrician and the Orthopedic surgreon with her new "magic leg". So far, they think it's perfect and will be fine. She is able to move her right leg (the one broken) from 180 degrees (laying) to about a semi sitting position so she can sit in her car seat. I do'nt imagine it's super comfortable but at least she isn't locked in one position like we were worried about.
We are awaiting some funding options b/c it's not covered like a regular cast. But the man that made it found us a use pieced of this "thing" that he made, so it cut the cost down, praise God!
Our OT that Ayla has at preschool is coming out tomorrow bringing a wheel chair/stroller and help us digure out some other things that we need (she is also the quality of life specialist). Bum changing is kind of difficult and changing her clothes, so there will be a big learning curve for me on my own.
So thankfully this is all way better than what it seemed yesterday morning. That said, we will be back to building up muscle again after this heals. The heal time would usually be 3/4 weeks in a "normal" child with this break, hers may be quite a bit longer due to the drugs she is on. We know the miracles He can do, please pray for a short healing so she can get back to pounding the pavement.
I also spoke with our social worker through where Ayla attends preschool/phsyio and she's coming out Monday to talk through some stuff and help us get Ezra some help. He has really been struggling so much and i was going to contact her this week anyways, and then this happened.
Thanks so much for all your prayers and support.
Ayla got her one of a kind prototype never been made before brace/cast made by someone awesome in Windsor:)
We got it all fitted and adjusted around 1/2 and then we had to go back to the hospital to see the Paediatrician and the Orthopedic surgreon with her new "magic leg". So far, they think it's perfect and will be fine. She is able to move her right leg (the one broken) from 180 degrees (laying) to about a semi sitting position so she can sit in her car seat. I do'nt imagine it's super comfortable but at least she isn't locked in one position like we were worried about.
We are awaiting some funding options b/c it's not covered like a regular cast. But the man that made it found us a use pieced of this "thing" that he made, so it cut the cost down, praise God!
Our OT that Ayla has at preschool is coming out tomorrow bringing a wheel chair/stroller and help us digure out some other things that we need (she is also the quality of life specialist). Bum changing is kind of difficult and changing her clothes, so there will be a big learning curve for me on my own.
So thankfully this is all way better than what it seemed yesterday morning. That said, we will be back to building up muscle again after this heals. The heal time would usually be 3/4 weeks in a "normal" child with this break, hers may be quite a bit longer due to the drugs she is on. We know the miracles He can do, please pray for a short healing so she can get back to pounding the pavement.
I also spoke with our social worker through where Ayla attends preschool/phsyio and she's coming out Monday to talk through some stuff and help us get Ezra some help. He has really been struggling so much and i was going to contact her this week anyways, and then this happened.
Thanks so much for all your prayers and support.
Wednesday, June 16, 2010
Ayla-a bad fall 6-17-10
Today, after dinner, Ayla had a bad fall. We took her to ER and she has a fractured femur. She put a temp cast on after hours and hourse of waiting, we are home finally at 2am. We are to go back into the Windsor Hospital a 6am for a cast, (we do'nt think surgery). Please pray so hard for another miracle in her. She is so scared and just doesn't want to do this all again. She will be in cast for 6-8 weeks which means that she will likely lose all muscle tone in that leg again. Please pray for our little girl like you have been. Please pray for Ezra as he is having such a hard time and this is just adding to it. Please pray for Ryan's work not to be influenced by coming home to be with her.
I'm tired and going to try and get a few hours sleep before the day begins.
I'm tired and going to try and get a few hours sleep before the day begins.
Saturday, June 5, 2010
Ayla update 6-4-10
I have been meaning to send an update on Ayla all week but sometimes life gets in the way of email:)
Ayla is doing well. She had lots of fun in Florida and enjoyed the pool very much:)
Her leg that was bothering her seems to be fine now and she's walking around very well. She has fallen a few times which have resulted in a goose egg on her forehead and a scrapped knee, but no broken bones. When she does fall it's very strange...like her legs give out, not like she trips. I'm praying the falling stage will be over soon because it's not very much fun. She still isn't strong enough to break her fall, but her upper body stregnth is coming along. We bought her some new walking shoes and they seem to be making a big difference in the way she walks. She also got some custom made orthotics. Together they have almost eliminated the "knock kneed" walk.
She has a hard time walking in the grass because she can't pick her legs up and step at the same time. But it will come:)
She saw the OT this week and she was able to get Ayla to crawl on her hands and knees, which is a huge deal because she couldn't weight bare like that on her arms almost at all. It's tiring for her, but it's coming. Praise God:)
She's struggling a getting up from laying down. She can't seem to get the roll and push with the arm good enough to get herself up. The PT is hoping that that comes soon because it's something we have been working on for a while.
She is having lots of fun pushing around her stroller and shopping cart all over the house and playing outside.
I'm trying to put together a short power point presentation of the miracle God has done in her for our church, when it's done i'll send it out to you all.
Thanks so much for the love and support from you all.
God Bless!
Lacy
Ayla is doing well. She had lots of fun in Florida and enjoyed the pool very much:)
Her leg that was bothering her seems to be fine now and she's walking around very well. She has fallen a few times which have resulted in a goose egg on her forehead and a scrapped knee, but no broken bones. When she does fall it's very strange...like her legs give out, not like she trips. I'm praying the falling stage will be over soon because it's not very much fun. She still isn't strong enough to break her fall, but her upper body stregnth is coming along. We bought her some new walking shoes and they seem to be making a big difference in the way she walks. She also got some custom made orthotics. Together they have almost eliminated the "knock kneed" walk.
She has a hard time walking in the grass because she can't pick her legs up and step at the same time. But it will come:)
She saw the OT this week and she was able to get Ayla to crawl on her hands and knees, which is a huge deal because she couldn't weight bare like that on her arms almost at all. It's tiring for her, but it's coming. Praise God:)
She's struggling a getting up from laying down. She can't seem to get the roll and push with the arm good enough to get herself up. The PT is hoping that that comes soon because it's something we have been working on for a while.
She is having lots of fun pushing around her stroller and shopping cart all over the house and playing outside.
I'm trying to put together a short power point presentation of the miracle God has done in her for our church, when it's done i'll send it out to you all.
Thanks so much for the love and support from you all.
God Bless!
Lacy
Saturday, May 22, 2010
Ayla's checkup with the Doc
Today we went to see the Rhuematologist in London for Ayla's check up.
She was presently surprised at how well she is doing. She had no idea that Ayla could even stand:)
All her bloodwork came back perfect, so her liver and everything is holding up fine.
As for her leg, doesn't seem to be an issue. Maybe there was a pulled or tight muscle from being so busy. The PT thought that's what it might be. So we just have to keep an eye on it. It's nothing they would be able to see with an xray, it would have to be an MRI...which she would have to be sedated for. It's better now...Lord willing, it will stay better:) One of her legs is bigger than the other, as in thicker...so it must be stronger than the other and the smaller one was the hurt one.
She's got some discoloration all over her torsoe, which is apparently scarring from being so swollen for so long, it should go away.
She's weaning off her steroird slowly and it's going well. It will be a while before she's off because it's very slow, but she is handling it fine. I never knew this before, but the steroid makes your bones weaker, so a bad fall wouldn't be good. Not only now because she isn't strong enough to brace herself, but because of lack of bone strength.
It's so funny because Ayla shuts down as soon as we get there. She won't speak or look at the doctor other than with a scowl. As soon as we are done and walking down the hall, she's all chatty cathy again and bubbly and wants to go play in the play room. We almost didn't get her to walk for the doctor, since she's so "strong willed". But she did, a few steps. Dr said, it's good that she's so strong willed because that's probably why she's doing so well. But we know that God made her strong willed and God is helping her do so well:)
The set backs are hard, like when she couldn't walk this week and we had no idea what was happening. So many things run through your mind trying to "figure it out". Only one person knows what's wrong and how to fix it...and it's not Ryan or I or the doctors. He must be saying to us all the time, "STOP TRYING TO FIGURE IT OUT, I KNOW WHAT I'M DOING!!!!"
Praise God for the progress and the set backs. Praise God for all the love and prayers from you all.
The kids and i are off the Florida this evening to spend a week with my mom and brother. We are excited to have some fun...all Ayla cares about is "pool florida?" Yes, there will be a pool, so she'll be happy:)
Thanks again and God bless you all!
Lacy
She was presently surprised at how well she is doing. She had no idea that Ayla could even stand:)
All her bloodwork came back perfect, so her liver and everything is holding up fine.
As for her leg, doesn't seem to be an issue. Maybe there was a pulled or tight muscle from being so busy. The PT thought that's what it might be. So we just have to keep an eye on it. It's nothing they would be able to see with an xray, it would have to be an MRI...which she would have to be sedated for. It's better now...Lord willing, it will stay better:) One of her legs is bigger than the other, as in thicker...so it must be stronger than the other and the smaller one was the hurt one.
She's got some discoloration all over her torsoe, which is apparently scarring from being so swollen for so long, it should go away.
She's weaning off her steroird slowly and it's going well. It will be a while before she's off because it's very slow, but she is handling it fine. I never knew this before, but the steroid makes your bones weaker, so a bad fall wouldn't be good. Not only now because she isn't strong enough to brace herself, but because of lack of bone strength.
It's so funny because Ayla shuts down as soon as we get there. She won't speak or look at the doctor other than with a scowl. As soon as we are done and walking down the hall, she's all chatty cathy again and bubbly and wants to go play in the play room. We almost didn't get her to walk for the doctor, since she's so "strong willed". But she did, a few steps. Dr said, it's good that she's so strong willed because that's probably why she's doing so well. But we know that God made her strong willed and God is helping her do so well:)
The set backs are hard, like when she couldn't walk this week and we had no idea what was happening. So many things run through your mind trying to "figure it out". Only one person knows what's wrong and how to fix it...and it's not Ryan or I or the doctors. He must be saying to us all the time, "STOP TRYING TO FIGURE IT OUT, I KNOW WHAT I'M DOING!!!!"
Praise God for the progress and the set backs. Praise God for all the love and prayers from you all.
The kids and i are off the Florida this evening to spend a week with my mom and brother. We are excited to have some fun...all Ayla cares about is "pool florida?" Yes, there will be a pool, so she'll be happy:)
Thanks again and God bless you all!
Lacy
Monday, May 17, 2010
walking Ayla5-17-10
Sorry i didn't send an update last week.
Last week Ayla took leaps and bounds. Monday she was only taking a few steps without holding on, by wednesday, she was taking about 5-10 steps...a little shakey but good. She was pushing her little shopping cart around the house like a maniac following me everywhere:) It was so good to see! Monday she walked from one end of the house to the other to come find me! It's the first time she has walked/moved to me since early december! Praise God! By friday in Owen Sound she was moving and groving everywhere! All over Ryan's little apartment without holding on. Wanting to "walt", as she says it. She would just come to you and say "hi mom. Bye" and walk to the door pretending she was going grocery shopping, then come back and say, "i back now." It was sooo sweet:)
Ryan had a great time with them on the weekend and said she was walking everywhere.
Falling is still an issue as her arms still aren't strong enough to brace for a front fall, so we continue to work on that here and at preschool.
So what a great update for last week!
This morning getting ready for preschool, she was pushing her little baby stroller walking all over the house. When i went to pick her up after preschool...she was sitting crying with the PT. Something is wrong. One of her legs/knees/something is in pain and she can't walk again. It's physically hurting her...not mental. the PT couldn't feel any difference in the legs, but it's hard for her to tell with Ayla crying no matter where she touches her just because she wants to be done. She suggested that i carry her for the next couple hours until we got home and then let her do something she normalls does at home and see if she actually does hurt or if it's just she didn't want to do anything for PT today. We've tried a few times and she can't move one leg. She's very upset beause she desperately wants to push her stroller and cart and stands to do it and cries and can't move. Hopefully it's just soreness from working to hard and will be back to working order again soon, please pray.
Also, today i took Ayla to the dentist. First time she's been. Her teeth have been looking "clear" since the meds. Her teeth are in very rough shapes due to many things; meds, calcium depletion, etc. She is going to need surgery to have caps put on and some other minor things done. The dentist tried to glorify it by saying "they have this really cool program at the hospital called "Surgical Safari" that you can go and do a tour and meet the child life people...." To which i responded...yeah, we know all the child life people and the floor pretty well unfortunately." It's a day in, under anestetic, home later in the day. It won't happen until July/August.
I feel so bad for my girl...i am so happy to see how God has healed her and i don't have a clue why this is happening and she has to endure some more.
With lots of love and thanks,
Lacy
God Bless
Last week Ayla took leaps and bounds. Monday she was only taking a few steps without holding on, by wednesday, she was taking about 5-10 steps...a little shakey but good. She was pushing her little shopping cart around the house like a maniac following me everywhere:) It was so good to see! Monday she walked from one end of the house to the other to come find me! It's the first time she has walked/moved to me since early december! Praise God! By friday in Owen Sound she was moving and groving everywhere! All over Ryan's little apartment without holding on. Wanting to "walt", as she says it. She would just come to you and say "hi mom. Bye" and walk to the door pretending she was going grocery shopping, then come back and say, "i back now." It was sooo sweet:)
Ryan had a great time with them on the weekend and said she was walking everywhere.
Falling is still an issue as her arms still aren't strong enough to brace for a front fall, so we continue to work on that here and at preschool.
So what a great update for last week!
This morning getting ready for preschool, she was pushing her little baby stroller walking all over the house. When i went to pick her up after preschool...she was sitting crying with the PT. Something is wrong. One of her legs/knees/something is in pain and she can't walk again. It's physically hurting her...not mental. the PT couldn't feel any difference in the legs, but it's hard for her to tell with Ayla crying no matter where she touches her just because she wants to be done. She suggested that i carry her for the next couple hours until we got home and then let her do something she normalls does at home and see if she actually does hurt or if it's just she didn't want to do anything for PT today. We've tried a few times and she can't move one leg. She's very upset beause she desperately wants to push her stroller and cart and stands to do it and cries and can't move. Hopefully it's just soreness from working to hard and will be back to working order again soon, please pray.
Also, today i took Ayla to the dentist. First time she's been. Her teeth have been looking "clear" since the meds. Her teeth are in very rough shapes due to many things; meds, calcium depletion, etc. She is going to need surgery to have caps put on and some other minor things done. The dentist tried to glorify it by saying "they have this really cool program at the hospital called "Surgical Safari" that you can go and do a tour and meet the child life people...." To which i responded...yeah, we know all the child life people and the floor pretty well unfortunately." It's a day in, under anestetic, home later in the day. It won't happen until July/August.
I feel so bad for my girl...i am so happy to see how God has healed her and i don't have a clue why this is happening and she has to endure some more.
With lots of love and thanks,
Lacy
God Bless
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