Ayla has people all over the world praying for her. All over Canada, the US, and Europe...those are just that we know of:)
Today we got a cool story from a relative:
"Today we went to Sault Ste Marie to the Salvation Army church were we often go, But had not been there for a few weeks. I requesded prayer for Ayla. After church a lady came to me and said that she had been getting E-mails about Ayla from her friend out west. I could hardly believe what I was hearing from a lady that I hardly know. I guess we will never know this side of heaven how many peaple are praying for Ayla. ------ "
I just thought it was really cool how the prayer chain works and thought i would share. God is good and He is awesome:)
Lacy
Monday, March 15, 2010
Saturday, March 13, 2010
So we are back from London.
The appt went fine. Nothing new really.
The Rhuem, intake person at Bloorview, and our PT have been in contact. The rhuematologist said she would suggest Ayla go there. They have an opening as early as next month. Bloorview also agrees it would be good for Ayla. They will be contacting us this week.
We spoke to the Rhuem about Ayla's emotional/mental difficulties and she agree's that it's not an easy decision whatever we decide to do, but can't really offer advice.
Again, they know nothing of this and have no idea what the recovery time is or if it will come, but they are hoping.
She told us that Ayla would have access to just about every kind of therapy there is while there. That said, only 1 parent can be there. And there is a commitment of 4weeks-3months and depending on how she's doing possibly longer. (If she's doing very well they will keep her and make even more progress). That means our family being apart for a very long time...with another young one at home, who's had mom around for his whole life.
There are so many other determining factors. I don't know how we are ever going to decide and be at peace with the decision. We are constantly praying for God's guidance and direction...but every time we turn around something pushes us back the opposite way...ugh
Ayla has been through so much already and has Post Traumatic Stress...
-this could totally make it worse. She could totally shut down for them or they could pull her out of her funk.
-she will be away from home with only mommy's attention for a very long time, a hard transition when we get home (is it worth ANOTHER change?)
-we have no child care for Ezra while i'm gone
-Ezra has been through so much as well...should we really be away for that long???
-is slow and easy better than quick and hard??
And there are a number of other factors. None of which seem to be swaying us one way or another.
Sorry this is all so very jumbled. I just have a mess going on in my head. On top of this Ayla is crying all day and waking at night due to the poop thing...it no longer hurts, but now she's scared. BECAUSE SHE NEEDS MORE TO BE AFRAID OF RIGHT?!?! Sorry for too much information.
Anyways, they are continuing to wean down her steroid meds and are hoping to see a difference in her fascia (skin tightness and stiffness) in the next couple of weeks. They are also putting out a world wide announcment on the Rhuematology forums hoping they can find another family to put us in contact with who has been through this with a young child. Right now they only know of 3 (including Ayla) from sickkids in Toronto.
That's all for now.
The appt went fine. Nothing new really.
The Rhuem, intake person at Bloorview, and our PT have been in contact. The rhuematologist said she would suggest Ayla go there. They have an opening as early as next month. Bloorview also agrees it would be good for Ayla. They will be contacting us this week.
We spoke to the Rhuem about Ayla's emotional/mental difficulties and she agree's that it's not an easy decision whatever we decide to do, but can't really offer advice.
Again, they know nothing of this and have no idea what the recovery time is or if it will come, but they are hoping.
She told us that Ayla would have access to just about every kind of therapy there is while there. That said, only 1 parent can be there. And there is a commitment of 4weeks-3months and depending on how she's doing possibly longer. (If she's doing very well they will keep her and make even more progress). That means our family being apart for a very long time...with another young one at home, who's had mom around for his whole life.
There are so many other determining factors. I don't know how we are ever going to decide and be at peace with the decision. We are constantly praying for God's guidance and direction...but every time we turn around something pushes us back the opposite way...ugh
Ayla has been through so much already and has Post Traumatic Stress...
-this could totally make it worse. She could totally shut down for them or they could pull her out of her funk.
-she will be away from home with only mommy's attention for a very long time, a hard transition when we get home (is it worth ANOTHER change?)
-we have no child care for Ezra while i'm gone
-Ezra has been through so much as well...should we really be away for that long???
-is slow and easy better than quick and hard??
And there are a number of other factors. None of which seem to be swaying us one way or another.
Sorry this is all so very jumbled. I just have a mess going on in my head. On top of this Ayla is crying all day and waking at night due to the poop thing...it no longer hurts, but now she's scared. BECAUSE SHE NEEDS MORE TO BE AFRAID OF RIGHT?!?! Sorry for too much information.
Anyways, they are continuing to wean down her steroid meds and are hoping to see a difference in her fascia (skin tightness and stiffness) in the next couple of weeks. They are also putting out a world wide announcment on the Rhuematology forums hoping they can find another family to put us in contact with who has been through this with a young child. Right now they only know of 3 (including Ayla) from sickkids in Toronto.
That's all for now.
Wednesday, March 10, 2010
3-10-10
Last friday and this past monday Ayla had Occupational Therapy. They went okay. The OT said she could work on Ayla for hours. Ayla held up alright, losing it a few times, but not a mess of tears the entire time. Monday she even had a little fun the last few minutes playing playdough.
Today she had PT, i prayed right before we went in that God would help this to be a better day for her. It was pretty good. She protested of course but not a mess of screams the whole time. She even let the PT hold her for a bit without too much protest. She walked about 10 assisted steps with her magic legs on 4 times. She cried most of that time, but did pretty well. She also stood with her magic legs on with the PT and rolled a ball back and forth to Ezra. She kept saying "no" and swattign the ball away but we noticed that it kind of looked like in swatting it away she was pushing it back. Ryan wanted me to mention, he caught her grinning for just a second and then when she saw him, went back to a scowl. Little booger.
We also saw the behavioral consultant today, who happens to be retiring on friday...oh good another new person for Ayla to meet. Anyways, she gave us some tips on how we can help. She agree's that we do have to keep Ayla trusting us without reinforcing the thought that "i'm so sick i need mom and dad to help me with everything." Still respond to her, but to tell her she's is ok and we'll be right there, instead of rushing to her side. Which we try to do, but for so long she's been ill. So we will continue. She will realize that these things are fun and that mom and dad are right there and if it does hurt then we will help her. Also, making her do things. Instead of "Ayla, would you like to wear your magic legs?" "Ayla it's time to wear your magic legs, IT WILL BE FUN." And make it as much fun as we can even if she's not enjoying it at first, she will at some point. She also agree'd with what the PT said last week, Ayla is too smart for her own good. Bloorview Rehabilitation Center in Toronto was talked about today as well. We got their feelings and thoughts on it. So we are praying for the Lords direction in that.
This Friday we see Ayla's doctor in London. We are still continuing to wean down her meds and it's working fine. This may be too much, but Ayla is struggling to go poop now. It's an all day agony/battle for her. Yet another difficult thing for her to deal with.
This week has been a hard week for us because Ayla is disabled, but life goes on. So to take what God gives us and just keep going can be hard some days. God is good. We are so thankful for the people God has surrounded us with.
Lots of Love.
God Bless.
"Come to me, all you that are weary and are carrying heavy burdens, and i will give you rest." -Matthew 11:28
I also just wanted to add, this doesn't have anything to do with Ayla, but we know a lot of people fighting with cancer right now, if you could please take a moment to pray for them, God would love it (and we would too). Be a blessing.
Today she had PT, i prayed right before we went in that God would help this to be a better day for her. It was pretty good. She protested of course but not a mess of screams the whole time. She even let the PT hold her for a bit without too much protest. She walked about 10 assisted steps with her magic legs on 4 times. She cried most of that time, but did pretty well. She also stood with her magic legs on with the PT and rolled a ball back and forth to Ezra. She kept saying "no" and swattign the ball away but we noticed that it kind of looked like in swatting it away she was pushing it back. Ryan wanted me to mention, he caught her grinning for just a second and then when she saw him, went back to a scowl. Little booger.
We also saw the behavioral consultant today, who happens to be retiring on friday...oh good another new person for Ayla to meet. Anyways, she gave us some tips on how we can help. She agree's that we do have to keep Ayla trusting us without reinforcing the thought that "i'm so sick i need mom and dad to help me with everything." Still respond to her, but to tell her she's is ok and we'll be right there, instead of rushing to her side. Which we try to do, but for so long she's been ill. So we will continue. She will realize that these things are fun and that mom and dad are right there and if it does hurt then we will help her. Also, making her do things. Instead of "Ayla, would you like to wear your magic legs?" "Ayla it's time to wear your magic legs, IT WILL BE FUN." And make it as much fun as we can even if she's not enjoying it at first, she will at some point. She also agree'd with what the PT said last week, Ayla is too smart for her own good. Bloorview Rehabilitation Center in Toronto was talked about today as well. We got their feelings and thoughts on it. So we are praying for the Lords direction in that.
This Friday we see Ayla's doctor in London. We are still continuing to wean down her meds and it's working fine. This may be too much, but Ayla is struggling to go poop now. It's an all day agony/battle for her. Yet another difficult thing for her to deal with.
This week has been a hard week for us because Ayla is disabled, but life goes on. So to take what God gives us and just keep going can be hard some days. God is good. We are so thankful for the people God has surrounded us with.
Lots of Love.
God Bless.
"Come to me, all you that are weary and are carrying heavy burdens, and i will give you rest." -Matthew 11:28
I also just wanted to add, this doesn't have anything to do with Ayla, but we know a lot of people fighting with cancer right now, if you could please take a moment to pray for them, God would love it (and we would too). Be a blessing.
Wednesday, March 3, 2010
Patience, Stamina, Determination...us and her:)
Today Ayla had physio. Friday she will have occupational therapy (arms/upper body). We had a little chat with the PT about Ayla after. She is so strong willed that it takes a lot of determination,patience, and stamina for all of us involved. Also, she said that Ayla is so smart. She uses the same intellectual techniques on her as she does most 4 year olds, which is so great, but it's another thing that works against her because she emotionally is still a 2 year old, so it's a battle in her mind.
She can't explain at all what this feels like. It's so rare that they just don't know. She imagines that when she stand on her feet that it feels like that tingly feeling you get when something falls asleep...but constant. That's all she can really think of.
She will stand up straight and take steps with the PT only gently touching her to help her rock back and forth to shift weight, but as soon as we get our hands on her, she slumps forward or back and will not stand up straight for us.
All of her joints are slowly gaining back mobility. Her knees, elbows, hips and worlds better. And her ribs and spine are slowly getting their mobility/flexibility back.
We talked about what she needs emotionally and physically from us. How we have to believe that she can do this and not worry about her falling or being in pain (which they say she isn't, when she cries there are no tears). And even when things are not fun, tell her they are fun (because she knows they are, it's just her way of controlling something in a world where she can control nothing) and encourage her. When we do "fun" things with her, make it short, take a break, then do it again so she can get used to not having to be afraid and that there really is nothing to be afraid of.
It's such and emotional battle for her and for us. Does she really need to sit there and cry from me 24 hours a day, or is she really just trying to control me or see if i still believe that she's so sick she needs me all the time?? Only God knows...but i wish he would tell me.
Anyways, so i left today with lots of thoughts and things to pray about but not quite sure how to pray...
Thanks so much for all thoughts and prayers.
PS today we started decreasing Ayla meds again. This mornign she handled it fine. She could be quite achey for a few days though.
She can't explain at all what this feels like. It's so rare that they just don't know. She imagines that when she stand on her feet that it feels like that tingly feeling you get when something falls asleep...but constant. That's all she can really think of.
She will stand up straight and take steps with the PT only gently touching her to help her rock back and forth to shift weight, but as soon as we get our hands on her, she slumps forward or back and will not stand up straight for us.
All of her joints are slowly gaining back mobility. Her knees, elbows, hips and worlds better. And her ribs and spine are slowly getting their mobility/flexibility back.
We talked about what she needs emotionally and physically from us. How we have to believe that she can do this and not worry about her falling or being in pain (which they say she isn't, when she cries there are no tears). And even when things are not fun, tell her they are fun (because she knows they are, it's just her way of controlling something in a world where she can control nothing) and encourage her. When we do "fun" things with her, make it short, take a break, then do it again so she can get used to not having to be afraid and that there really is nothing to be afraid of.
It's such and emotional battle for her and for us. Does she really need to sit there and cry from me 24 hours a day, or is she really just trying to control me or see if i still believe that she's so sick she needs me all the time?? Only God knows...but i wish he would tell me.
Anyways, so i left today with lots of thoughts and things to pray about but not quite sure how to pray...
Thanks so much for all thoughts and prayers.
PS today we started decreasing Ayla meds again. This mornign she handled it fine. She could be quite achey for a few days though.
Monday, March 1, 2010
Better...
Ayla finally was able to keep stuff down around 6pm Friday night so we didnt have to go to the hospital. Thank God...i didn't want her to be butchered again for another IV. She was alright Saturday and Sunday and then Sunday night puked again (threw up her meds) at 6pm. Then again at 7.
She ate a little this morning and has so far kept everything down. Thanks for your prayers.
She ate a little this morning and has so far kept everything down. Thanks for your prayers.
Friday, February 26, 2010
Not handling well
We started this morning weaning Ayla off her prednisone. It's one dose at the same amount as she usually gets in a full day (2 doses). She's been throwing up most of the day.
We jsut gave her some gravol and are hoping it helps. If she continues to throw up then we will have to go to hospital for IV meds and fluid. UGH, PLEASE PRAY SHE DOESN'T.
We jsut gave her some gravol and are hoping it helps. If she continues to throw up then we will have to go to hospital for IV meds and fluid. UGH, PLEASE PRAY SHE DOESN'T.
Thursday, February 25, 2010
Magic Legs and Princess Gloves
I met with ACSD today (assistance for children with severe disabilities) and they are going to provide us with some help:) Praise God:)
Tomorrow we are supposed to start weaning Ayla off her prednisone. It could be achey/slightly painful for her. Hopefully it goes okay.
This morning she let us put on both her "magic legs" and "princess gloves" and didn't even cry! That's a huge step! Hopefully it continues. Yesterday we put them on her and she lost her mind...
She also got to go skating with Ryan today. He pushed her around in her stroller and carried her around a few times and stood her on the ice, she loved it. Next time we are gonig to try and bring her magic legs there:)
That's all for now.
Tomorrow we are supposed to start weaning Ayla off her prednisone. It could be achey/slightly painful for her. Hopefully it goes okay.
This morning she let us put on both her "magic legs" and "princess gloves" and didn't even cry! That's a huge step! Hopefully it continues. Yesterday we put them on her and she lost her mind...
She also got to go skating with Ryan today. He pushed her around in her stroller and carried her around a few times and stood her on the ice, she loved it. Next time we are gonig to try and bring her magic legs there:)
That's all for now.
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