Ayla did in fact fracture her left femur. They are not going to cast it, as it would have to be a full body cast or the thing that they made for her before. It's not bad, so they said as long as she stays off it, it should be better in a few weeks. She goes back in 4 for xrays.
Sometimes i'm not sure how to feel. Whether i should feel defeated, indifferent b/c this is way of life now, or thankful that's it just such a small break...i think i feel a little of those things at the same time.
God is good. Yesterday i heard on the radio someone talking about seeing the good in your/someone close to you suffering. How it may be hard to see when it's going on, but if you made a list, how many of the bad things would have good come out of them, and how most of the list would probably have something good come out. They said that when we get to Heaven, we will be able to see that good came out of every single trial because we will be able to see how many people we touched in the distance.
I think Ayla's list is very long for a 3 year old. But i also thing she's got a good start on showing the good to people around her.
Lots of Love and thanks,
Lacy
Thursday, February 24, 2011
Wednesday, February 23, 2011
Possible break
This morning we got a call from a friend that happens to be a NP at the ER in Leamington Hospital (where Ayla had her xrays). She told me she double checked the report and said there is a possible fracture in the femur.
She sent the report to the pediatrician who we saw this morning. She sent us for more xrays and gave us a referral to the fracture clinic for tomorrow morning bright and early (6am). She isn't sure if there is anything there, if they will cast it, brace it, etc and then check it again in a few weeks. She did take a few steps on it today, but she can't twist it or bare lots of weight on it...we shall see.
Ezra's ears are really bothering him. He was up in the night crying. They are full of fluid. We had him at the doc yesterday and they gave us a flush told him to chew gum and talked about tubes in his ears. GRRR This is the first ear problem he's ever had, let's not jump to surgery so fast. He goes back tomorrow and then i'm taking him to a chiropractor to see if they can get the fluid to drain with an adjustment.
Anyways, that's all for now. I'll let everyone know how tomorrow goes. Thank you for your prayers!!!!
Lacy
She sent the report to the pediatrician who we saw this morning. She sent us for more xrays and gave us a referral to the fracture clinic for tomorrow morning bright and early (6am). She isn't sure if there is anything there, if they will cast it, brace it, etc and then check it again in a few weeks. She did take a few steps on it today, but she can't twist it or bare lots of weight on it...we shall see.
Ezra's ears are really bothering him. He was up in the night crying. They are full of fluid. We had him at the doc yesterday and they gave us a flush told him to chew gum and talked about tubes in his ears. GRRR This is the first ear problem he's ever had, let's not jump to surgery so fast. He goes back tomorrow and then i'm taking him to a chiropractor to see if they can get the fluid to drain with an adjustment.
Anyways, that's all for now. I'll let everyone know how tomorrow goes. Thank you for your prayers!!!!
Lacy
Saturday, February 19, 2011
She's 3!!!
Hi everyone! So Ayla's birthday was yesterday! She's 3!!!
Some of you know that we went to Florida on the 12th and just returned home today. We went with Ryan's parents, his brother and sister in law and our 2 nieces, soem friends of ours and their 2 kids. 14 of us total.
It was fun. Lots of highs and lows...Ayla was sick (as were most of the kids) and feverish for most of it but enjoyed parts. We went to Disney 2 days and to the Kennedy Space Center and did lots of swimming. We tried to take Ayla to a doctor for her fever and congestion after a few days, but it was a bust, no one would listen to her heart beat b/c of her medication/pre existing condition until we went to a specialist clinic which was just $300 to see the doctor for 5 mintues. We knew we were coming home today and so we just figured if she was still ill, we'd stop at a clinic or ER on the way home.
We did a breakfast with Cinderella and all the pincesses on Tuesday. It was really cool but very sad for us. Ayla was not feeling well and was miserable and crying (and she loves the princesses). Her and i sat and cried...i felt so sad that my little girl was once again suffering. And it was like a knife pain to watch all the other little girls soaking up every moment of the excitement. I desperately wanted my girl to have a better birthday...
The people there were very kind (especially our waitress, Lynn...God Bless her) and brought her a picnic lunch, some little extra treats, a card signed by the princesses saying they hoped she felt better soon, an extra 8x10 booklet of our group and the castle. and they cleared it with the manager that if later in the day if she felt better, she could come back and meet all the princesses. Later on she still didn't want to go back, but she was feeling a bit better. When we reminded her that we would not be back soon, she agree'd quickly to go and see them before we left. Ezra and Ryan even came too (Ezra liked it, but he'll tell you differently...hehe). We met them all and got pictures with them also. They were all just great and we were so thankful for them going above and beyond...
Then yesterday (the day before we left...feels like ages ago already and Ayla's actual birthday!!!!), Ayla fell and twisted her leg behind her. Again. She cried and cried and then settled but still didn't want anyone to move it or even try standing or walking. So, just to be safe, when we got home tonight we went straight to the ER in fear of another broken leg. (Lots of prayer went on last night about that darn leg...)
It's not broken! Thanks be to the Lord! They did xrays and couldn't see anything wrong. Maybe a pulled muscle or sprain. If it's not better in a day or 2 we have to go back in case it's hairline...something so small it's hard to see. THey are having the radiologist check it over in the morning.
So, we are home now. Everyone is in bed and i'm off there soon myself. 5:30am wake up calls, a long flight, getting pulled into secondary at customs, and then off to the ER...WHO NEEDS DISNEY LAND?!?!?
Another birthday come and gone for our girl without any sense of what a "regular 3 year olds" birthday would be like. Our waitress at Disney happened to have a daughter who was disabled and she said, in such a kind, loving, english accent, "this isn't for them...it's for us. It's what WE want for them. It's much easier on them than it seems to be on us because of what WE want for them. Kids are resiliant...they are special like that." And once again i thought about Gods plan for Ayla. God's plan is not my plan....it's not what i want....it's what she/i/we needs. It's so much greater than we could ever imagine. I'm so thankful that He carries me when i just can't seem to stand anymore. When i don't want to stand anymore. I'm even more thankful that He carries my girl...and our whole family.
I have to say, later that same day of the princess breakfast, we saw a little girl about Ayla's age that had cancer. She was bald from her chemo and had a make a wish badge on and so happy to be there....she was so beautiful and i'm sure God put her there to put things into perspective for me.
I also wanted to add quickly that Ayla is still having some pain her in mouth. I can't remember who i told about this. It's been going on a few weeks now. It's mostly better. They think it's maybe a joint in her jaw, TMJ, but no one is sure. Her PT's and OT's have been working on it.
Thanks!
Lots of Love!
Lacy
Some of you know that we went to Florida on the 12th and just returned home today. We went with Ryan's parents, his brother and sister in law and our 2 nieces, soem friends of ours and their 2 kids. 14 of us total.
It was fun. Lots of highs and lows...Ayla was sick (as were most of the kids) and feverish for most of it but enjoyed parts. We went to Disney 2 days and to the Kennedy Space Center and did lots of swimming. We tried to take Ayla to a doctor for her fever and congestion after a few days, but it was a bust, no one would listen to her heart beat b/c of her medication/pre existing condition until we went to a specialist clinic which was just $300 to see the doctor for 5 mintues. We knew we were coming home today and so we just figured if she was still ill, we'd stop at a clinic or ER on the way home.
We did a breakfast with Cinderella and all the pincesses on Tuesday. It was really cool but very sad for us. Ayla was not feeling well and was miserable and crying (and she loves the princesses). Her and i sat and cried...i felt so sad that my little girl was once again suffering. And it was like a knife pain to watch all the other little girls soaking up every moment of the excitement. I desperately wanted my girl to have a better birthday...
The people there were very kind (especially our waitress, Lynn...God Bless her) and brought her a picnic lunch, some little extra treats, a card signed by the princesses saying they hoped she felt better soon, an extra 8x10 booklet of our group and the castle. and they cleared it with the manager that if later in the day if she felt better, she could come back and meet all the princesses. Later on she still didn't want to go back, but she was feeling a bit better. When we reminded her that we would not be back soon, she agree'd quickly to go and see them before we left. Ezra and Ryan even came too (Ezra liked it, but he'll tell you differently...hehe). We met them all and got pictures with them also. They were all just great and we were so thankful for them going above and beyond...
Then yesterday (the day before we left...feels like ages ago already and Ayla's actual birthday!!!!), Ayla fell and twisted her leg behind her. Again. She cried and cried and then settled but still didn't want anyone to move it or even try standing or walking. So, just to be safe, when we got home tonight we went straight to the ER in fear of another broken leg. (Lots of prayer went on last night about that darn leg...)
It's not broken! Thanks be to the Lord! They did xrays and couldn't see anything wrong. Maybe a pulled muscle or sprain. If it's not better in a day or 2 we have to go back in case it's hairline...something so small it's hard to see. THey are having the radiologist check it over in the morning.
So, we are home now. Everyone is in bed and i'm off there soon myself. 5:30am wake up calls, a long flight, getting pulled into secondary at customs, and then off to the ER...WHO NEEDS DISNEY LAND?!?!?
Another birthday come and gone for our girl without any sense of what a "regular 3 year olds" birthday would be like. Our waitress at Disney happened to have a daughter who was disabled and she said, in such a kind, loving, english accent, "this isn't for them...it's for us. It's what WE want for them. It's much easier on them than it seems to be on us because of what WE want for them. Kids are resiliant...they are special like that." And once again i thought about Gods plan for Ayla. God's plan is not my plan....it's not what i want....it's what she/i/we needs. It's so much greater than we could ever imagine. I'm so thankful that He carries me when i just can't seem to stand anymore. When i don't want to stand anymore. I'm even more thankful that He carries my girl...and our whole family.
I have to say, later that same day of the princess breakfast, we saw a little girl about Ayla's age that had cancer. She was bald from her chemo and had a make a wish badge on and so happy to be there....she was so beautiful and i'm sure God put her there to put things into perspective for me.
I also wanted to add quickly that Ayla is still having some pain her in mouth. I can't remember who i told about this. It's been going on a few weeks now. It's mostly better. They think it's maybe a joint in her jaw, TMJ, but no one is sure. Her PT's and OT's have been working on it.
Thanks!
Lots of Love!
Lacy
Sunday, January 23, 2011
Ayla 1-23-11, never say never
Hello everyone!
I hope you all are enjoying the winter! I do not like the cold and the time it takes to get in and out the door, but the kids love it:) We have been sledding and skating and those parts have been fun for everyone. Ayla has really enjoyed it and we are so thankful. I'll send a couple pictures of her with this. When we went sledding it was hard for Ryan and i not to be in a panic, "what if she falls off?" But she never fell off and she laughed and screamed with joy every single time and did not want to leave when it was time. As for skating, she only last about 2 minutes on the ice with Ryan holding her up, but it was something she's been wanting to do since last year. She went on the ice with her little hockey helmet, a mini hockey stick (just like big brother), and a big smile on her face. Praise God for the little girl He made.
As some of you know, Ayla had an MRI finally scheduled for the 12th. We took her in, gave her the oral sedative, and it did not work. Our little girl would not go to sleep for her MRI, despite a very large dose and a very small little girl. A friend of ours who works in a different part of the hospital said, "The Lord must know she didn't need it today." So that's what i keep in mind, instead of the frustration. Ayla will now need a general anastetic for her MRI. She has an appointment in London this week with the anastatist, so that when they squeeze her in, we won't need to do that first. We are on a cancelation list for the MRI.
This week Ezra and I were playing at McDonalds while Ayla while we were waiting for Ayla to finish school. There was another little boy and girl the exact same age as our kids. And the little girl also goes to the John Mcgivney Center (school Ayla goes for therapy)! She goes there for speech therapy. One thing we've never needed for Ayla. So while i sat and watched them play i thought, "look at that girl run and climb, and when she falls she gets right back up. Ayla probably will never be able to do that." WHY DO I DO THAT TO MYSELF? If she never is able to do that, the Lord never intended for her to. It was never in her plan. Many other things are. Good and acceptable and perfect things, just for her. It's funny the ideas we get in our heads of the way things are "supposed" to be instead of how they are. Funny thing is, that day when we went to pick Ayla up, her Occupational Therapist told me that Ayla climbed the ladder on the wall with very little help. She was a "mountain climber." The therapist commented on how strong her arms are getting to be able to hold herself on. An hour earlier i was thinking, "probably never" and then how things change. We can never say or think never. It's our of our hands.
I bet this spring she'll be able to climb the slide in our backyard again, just like she was able to before all this happen, when she was only 18 months old.
Thanks for your love and support everyone!
God Bless.
Lacy
I hope you all are enjoying the winter! I do not like the cold and the time it takes to get in and out the door, but the kids love it:) We have been sledding and skating and those parts have been fun for everyone. Ayla has really enjoyed it and we are so thankful. I'll send a couple pictures of her with this. When we went sledding it was hard for Ryan and i not to be in a panic, "what if she falls off?" But she never fell off and she laughed and screamed with joy every single time and did not want to leave when it was time. As for skating, she only last about 2 minutes on the ice with Ryan holding her up, but it was something she's been wanting to do since last year. She went on the ice with her little hockey helmet, a mini hockey stick (just like big brother), and a big smile on her face. Praise God for the little girl He made.
As some of you know, Ayla had an MRI finally scheduled for the 12th. We took her in, gave her the oral sedative, and it did not work. Our little girl would not go to sleep for her MRI, despite a very large dose and a very small little girl. A friend of ours who works in a different part of the hospital said, "The Lord must know she didn't need it today." So that's what i keep in mind, instead of the frustration. Ayla will now need a general anastetic for her MRI. She has an appointment in London this week with the anastatist, so that when they squeeze her in, we won't need to do that first. We are on a cancelation list for the MRI.
This week Ezra and I were playing at McDonalds while Ayla while we were waiting for Ayla to finish school. There was another little boy and girl the exact same age as our kids. And the little girl also goes to the John Mcgivney Center (school Ayla goes for therapy)! She goes there for speech therapy. One thing we've never needed for Ayla. So while i sat and watched them play i thought, "look at that girl run and climb, and when she falls she gets right back up. Ayla probably will never be able to do that." WHY DO I DO THAT TO MYSELF? If she never is able to do that, the Lord never intended for her to. It was never in her plan. Many other things are. Good and acceptable and perfect things, just for her. It's funny the ideas we get in our heads of the way things are "supposed" to be instead of how they are. Funny thing is, that day when we went to pick Ayla up, her Occupational Therapist told me that Ayla climbed the ladder on the wall with very little help. She was a "mountain climber." The therapist commented on how strong her arms are getting to be able to hold herself on. An hour earlier i was thinking, "probably never" and then how things change. We can never say or think never. It's our of our hands.
I bet this spring she'll be able to climb the slide in our backyard again, just like she was able to before all this happen, when she was only 18 months old.
Thanks for your love and support everyone!
God Bless.
Lacy
Saturday, January 1, 2011
Ayla update 1-1-11
Happy New Year everyone!
No one in this house stayed up last night! Kids went to bed early and Ryan i couldn't make it much past 11pm. I woke up thankful to be home in our own beds. This time last year we were in the hospital and Ayla was in surgery first thing thing in the morning. Praise God for all the trials and blessings this last 365 days.
I hope you all had a Merry Christmas. We spent it in New York with my family and then came home and had another Christmas on the 27th and we are anticipating another Christmas on the 8th. Lots of food and fun. For those of you that know about the Hewitt Tradition of joke presents, you can guess just how much fun:) The one on the 8th will be even more joke presents with lots of laughter. (I really should send some pics of the funny things we get/make one another...) Anyways, this was a joyful Christmas for our family. Ayla and Ezra had so much fun opening gifts and playing with their uncle and cousins. Ayla was happy and healthy and running and playing and laughing like this last year didn't make a lick of difference in her little life. We took a moment to sit back and really appreciate that. Thank God.
Anyways, Ayla had an appointment on the 17th which was the last time i sent an update. I think we were also still waiting on the MRI, WHICH STILL HAS YET TO BE SCHEDULED. Ayla has a new doctor in London who was going to put in a req to see if we could just get it done in london instead of monkeying around here any longer. We shall see. Nothing much was done. We met the new Rhuematologist that is going to follow Ayla regularly with visits twice a year to Sick Kids in Toronto to see the lead Rhuematologist there. Nothing much was said or done. No mention of improvment but nothing is worse. The new doctor is trying to get a handle on all that has happened. I was a bit frustrated...i guess just because she hadn't gone through the file and was trying to "show" me how smart she was. Hopefully our impression will change as we get to know her better. We will miss Ayla's old doc but it will be nice to keep in touch a couple times a year and through email. She really worked so hard for us even with all the bumps in the road.
They are still wanting to try Ayla on another medication, the trial one. They use in along with the med she is on now for kids with rhuematic deseases and scleraderma (spelling???) and it works well. But it's never really been used for Ayla's disease. There are some side effects but they seem to be counteracted using it with the other medication. There also is some link to malignancy, but they are pretty sure that's because of the rhuematic disease itself, not the medication. Other than that, they don't know when they will get approval. Hopefully, when we go back she will be better and won't need any more medication on top of what she has now.
Oh, actually Ayla gained a bit of weight finally!!!! Around a pound...different scales at different places but for sure some weight gain! Woohoo!
Injections seem to get harder each week. She fights more and more now that she knows what is coming...
She's been off therapy/school since before Christmas and will go back on tuesday.
I keep watching her and can't believe how much better she's doing. Mobility wise...she's running and playing. She is loving playing in the snow this year. But there are little things i notice that still aren't right...the little things they have been working on for a long time that i'm not sure will come...maybe she would benefit from a new medication... But only the Lord knows.
Anyways, i hope you all have a happy new year and thank you all for following Ayla's updates and your continued prayer for her and our family.
God Bless!
Lacy
No one in this house stayed up last night! Kids went to bed early and Ryan i couldn't make it much past 11pm. I woke up thankful to be home in our own beds. This time last year we were in the hospital and Ayla was in surgery first thing thing in the morning. Praise God for all the trials and blessings this last 365 days.
I hope you all had a Merry Christmas. We spent it in New York with my family and then came home and had another Christmas on the 27th and we are anticipating another Christmas on the 8th. Lots of food and fun. For those of you that know about the Hewitt Tradition of joke presents, you can guess just how much fun:) The one on the 8th will be even more joke presents with lots of laughter. (I really should send some pics of the funny things we get/make one another...) Anyways, this was a joyful Christmas for our family. Ayla and Ezra had so much fun opening gifts and playing with their uncle and cousins. Ayla was happy and healthy and running and playing and laughing like this last year didn't make a lick of difference in her little life. We took a moment to sit back and really appreciate that. Thank God.
Anyways, Ayla had an appointment on the 17th which was the last time i sent an update. I think we were also still waiting on the MRI, WHICH STILL HAS YET TO BE SCHEDULED. Ayla has a new doctor in London who was going to put in a req to see if we could just get it done in london instead of monkeying around here any longer. We shall see. Nothing much was done. We met the new Rhuematologist that is going to follow Ayla regularly with visits twice a year to Sick Kids in Toronto to see the lead Rhuematologist there. Nothing much was said or done. No mention of improvment but nothing is worse. The new doctor is trying to get a handle on all that has happened. I was a bit frustrated...i guess just because she hadn't gone through the file and was trying to "show" me how smart she was. Hopefully our impression will change as we get to know her better. We will miss Ayla's old doc but it will be nice to keep in touch a couple times a year and through email. She really worked so hard for us even with all the bumps in the road.
They are still wanting to try Ayla on another medication, the trial one. They use in along with the med she is on now for kids with rhuematic deseases and scleraderma (spelling???) and it works well. But it's never really been used for Ayla's disease. There are some side effects but they seem to be counteracted using it with the other medication. There also is some link to malignancy, but they are pretty sure that's because of the rhuematic disease itself, not the medication. Other than that, they don't know when they will get approval. Hopefully, when we go back she will be better and won't need any more medication on top of what she has now.
Oh, actually Ayla gained a bit of weight finally!!!! Around a pound...different scales at different places but for sure some weight gain! Woohoo!
Injections seem to get harder each week. She fights more and more now that she knows what is coming...
She's been off therapy/school since before Christmas and will go back on tuesday.
I keep watching her and can't believe how much better she's doing. Mobility wise...she's running and playing. She is loving playing in the snow this year. But there are little things i notice that still aren't right...the little things they have been working on for a long time that i'm not sure will come...maybe she would benefit from a new medication... But only the Lord knows.
Anyways, i hope you all have a happy new year and thank you all for following Ayla's updates and your continued prayer for her and our family.
God Bless!
Lacy
Friday, December 17, 2010
Ayla 12-17
Morning everyone!
Today we are off to London to see Ayla's Rhuematologist and the new one that will start in the New Year. We are thankful for a new set of eyes on Ayla's case and also that the old one will continue following Ayla from Sick Kids in Toronto. Today we will talk more about the trial medication they wanted to look into for Ayla and also see if the injections we have been giving are helping. I'm writing now b/c i won't have access to this email while we are away for the holidays. I will write with an update when we are back after Christmas:)
She is going to London without the MRI that they requisitioned over a month and half ago. After many phone calls to the Rhuem, Pediatrician, and hospital radiology, they finally JUST connected on Wedensday late afternoon. I'm sure they will call and want her in next week while we are away in New York for my family Christmas. Lord will we will not be in any hospital for anything after the New Year. If they could wait this long, another little while isn't going to hurt anything. Obviously no one is in any hurry. I'm a bit frustrated, but it's okay.
Ayla is doing well phsyically. She is climbing on and off beds and couches and such. Which makes way more falls happen, but she's holding together pretty well. Thank God she's off those steroids! She's eating lots and hopefully today we can see a tiny bit of weight gain.
People at preschool/therapy and at church all have been commenting that she seems so much more happy. Whether that's because she's feeling better or growing up we can't be sure. But we are sure that we are thankful.
This Christmas we are thankful that we are not in a hospital. We are thankful that our girl is happy. We are thankful that Ryan is home with us. We are thankful for friends and family. We are thankful for prayers all over the world. We are thankful for all God has taught us through the suffering of our little girl. We are thankful that God sent is only begotten Son for us so that we shall not perish but have enternal life. Happy birthday Jesus and thank You so much.
Merry Christmas to you all!
God Bless!
Lacy
Today we are off to London to see Ayla's Rhuematologist and the new one that will start in the New Year. We are thankful for a new set of eyes on Ayla's case and also that the old one will continue following Ayla from Sick Kids in Toronto. Today we will talk more about the trial medication they wanted to look into for Ayla and also see if the injections we have been giving are helping. I'm writing now b/c i won't have access to this email while we are away for the holidays. I will write with an update when we are back after Christmas:)
She is going to London without the MRI that they requisitioned over a month and half ago. After many phone calls to the Rhuem, Pediatrician, and hospital radiology, they finally JUST connected on Wedensday late afternoon. I'm sure they will call and want her in next week while we are away in New York for my family Christmas. Lord will we will not be in any hospital for anything after the New Year. If they could wait this long, another little while isn't going to hurt anything. Obviously no one is in any hurry. I'm a bit frustrated, but it's okay.
Ayla is doing well phsyically. She is climbing on and off beds and couches and such. Which makes way more falls happen, but she's holding together pretty well. Thank God she's off those steroids! She's eating lots and hopefully today we can see a tiny bit of weight gain.
People at preschool/therapy and at church all have been commenting that she seems so much more happy. Whether that's because she's feeling better or growing up we can't be sure. But we are sure that we are thankful.
This Christmas we are thankful that we are not in a hospital. We are thankful that our girl is happy. We are thankful that Ryan is home with us. We are thankful for friends and family. We are thankful for prayers all over the world. We are thankful for all God has taught us through the suffering of our little girl. We are thankful that God sent is only begotten Son for us so that we shall not perish but have enternal life. Happy birthday Jesus and thank You so much.
Merry Christmas to you all!
God Bless!
Lacy
Monday, December 6, 2010
12-6-10
Things have been so busy! I recieved a couple emails about updates for Ayla, so here we are:)
Ayla is doing fine. Weekly injections started off easily and seem to be getting harder for her. She gets more upset each time. But at least it's not daily. I'm not sure if they are making any difference. Next friday we will see her Rhuem. in London and she will have more info for us about the other trial medication they want to try, which would be a monthly injection at the doctor on top of the weekly.
She has to have an MRI done by next friday. We are still waiting to hear. I called today and they were "working on getting it scheduled." Well it's been over a month and it has to be done in less than two weeks. Which doesn't seem like a big deal but because she has to be sedated we will have to go in for an Anastetia Consult i'm sure before the actually MRI. If no one calls by tomorrow i'm going to have to start knocking some heads together...hehe:) I'm sure the radiologist is looking at her chart thinking to himself "oh no, this kid again. The last one took 4 hours b/c her sedative wore off...ugh." Anyways, hopefully that will go smoothly and we will get some good results. I'm not quite sure what they are looking for yet...any improvment i guess that they can't see on the outside.
She is still having massage done 1-2 times a week. Now they moved to hurt feet/ankles because she's tolerating it fine. She loves to lady that does it. She's super kind and for that we are thankful:)
Last week Ayla had some further allergy testing. 3 appointments with the results being "well we can't prove that she is or isn't allergic to corn." There isn't enough research on corn allergies for them to be able to tell an internal reation. She does have a slight external but it seems to be getting less and less, so hopefully she's becoming more tolerant. Corn is very difficult b/c anything you can think of basically has some component of corn. He told us to continue avoiding if we see a difference. So that we will.
I spoke with a Pediatric Nutritionist just over a week ago. She had some really great creative ideas to get Ayla to gain weight that avoid corn and her lactose intolerance. This with an iron supplement will hopefully help her gain some fat and muscle.
Ayla sang and rang bells for the childrens Christmas presentation at our church. She was so cute:) She had fun being up there. "Mommy, did you see me waving?" Also, yesterday at our small group Christmas lunch/dinner we acted out the nativity story. It was lots of fun. Ezra and I were wise men, Ayla was an angel, and Ryan was the star:) Ayla especially had fun dressing up and Ezra liked having "gold" as a gift for baby Jesus. (Thanks Stephanie for your "vision")
Ryan has been home from Owen Sound for just over a week now! It's been nice, but man, what a transition! We've gotten a few things done around the house that have been waiting. And i made a "honey do" list that will hopefully get done this winter:)
Ezra is doing okay. The transition to having Daddy home is hard for Ayla and Ezra. I don't think they realize that "tomorrow" (whatever day it may be) Daddy doesn't have to go away. I think they keep soaking it up in case it's over soon. Hopefully God will allow Ryan to be home working soon, but for now we will soak up what we can.
I guess that's all for now. I will send off and email when i find out about Ayla's MRI so people can be praying.
Thanks so much for your continued love and prayers over our family, especially our wee girl.
God Bless you all and your families!!!
Lacy
Ayla is doing fine. Weekly injections started off easily and seem to be getting harder for her. She gets more upset each time. But at least it's not daily. I'm not sure if they are making any difference. Next friday we will see her Rhuem. in London and she will have more info for us about the other trial medication they want to try, which would be a monthly injection at the doctor on top of the weekly.
She has to have an MRI done by next friday. We are still waiting to hear. I called today and they were "working on getting it scheduled." Well it's been over a month and it has to be done in less than two weeks. Which doesn't seem like a big deal but because she has to be sedated we will have to go in for an Anastetia Consult i'm sure before the actually MRI. If no one calls by tomorrow i'm going to have to start knocking some heads together...hehe:) I'm sure the radiologist is looking at her chart thinking to himself "oh no, this kid again. The last one took 4 hours b/c her sedative wore off...ugh." Anyways, hopefully that will go smoothly and we will get some good results. I'm not quite sure what they are looking for yet...any improvment i guess that they can't see on the outside.
She is still having massage done 1-2 times a week. Now they moved to hurt feet/ankles because she's tolerating it fine. She loves to lady that does it. She's super kind and for that we are thankful:)
Last week Ayla had some further allergy testing. 3 appointments with the results being "well we can't prove that she is or isn't allergic to corn." There isn't enough research on corn allergies for them to be able to tell an internal reation. She does have a slight external but it seems to be getting less and less, so hopefully she's becoming more tolerant. Corn is very difficult b/c anything you can think of basically has some component of corn. He told us to continue avoiding if we see a difference. So that we will.
I spoke with a Pediatric Nutritionist just over a week ago. She had some really great creative ideas to get Ayla to gain weight that avoid corn and her lactose intolerance. This with an iron supplement will hopefully help her gain some fat and muscle.
Ayla sang and rang bells for the childrens Christmas presentation at our church. She was so cute:) She had fun being up there. "Mommy, did you see me waving?" Also, yesterday at our small group Christmas lunch/dinner we acted out the nativity story. It was lots of fun. Ezra and I were wise men, Ayla was an angel, and Ryan was the star:) Ayla especially had fun dressing up and Ezra liked having "gold" as a gift for baby Jesus. (Thanks Stephanie for your "vision")
Ryan has been home from Owen Sound for just over a week now! It's been nice, but man, what a transition! We've gotten a few things done around the house that have been waiting. And i made a "honey do" list that will hopefully get done this winter:)
Ezra is doing okay. The transition to having Daddy home is hard for Ayla and Ezra. I don't think they realize that "tomorrow" (whatever day it may be) Daddy doesn't have to go away. I think they keep soaking it up in case it's over soon. Hopefully God will allow Ryan to be home working soon, but for now we will soak up what we can.
I guess that's all for now. I will send off and email when i find out about Ayla's MRI so people can be praying.
Thanks so much for your continued love and prayers over our family, especially our wee girl.
God Bless you all and your families!!!
Lacy
Subscribe to:
Posts (Atom)
