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
Sunday, January 23, 2011
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
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