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
Friday, December 17, 2010
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
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