Hi all! I was thinking today, "it's been a while since i've done an update." So here I am.
Last week i was very sick with strep throat. Thank the Lord that my inlaws were able to come down and help with the kids. I am not sure what i would have done...my father in law had the week off. Coincidence??? I think not:)
I am better now and thankful that no one else came down with it.
Last week we learned that we should be doing some breathing excersizes with Ayla. Her ribs are locked up and so she can't inflate her lungs very well. So we've been having some fun with horns and whistles and such:)
Monday Ayla was due for her bloodwork. It went horribly once again...i wonder if taking her blood will ever get easier? They asked, "how much longer does she have to do this?" My answer, "Um....probably forever." You should have seen the look on their faces, these poor ladies hate taking her blood just as much as i hate taking her in. Both arms and they got barely enough blood. I wish there was an easier way...
Tuesday Ayla had an appointment with the Naturopathic Doctor. She had a chance to go over some of Ayla's past bloodwork (i was finally able to get it to her) and Ayla's iron levels are really low. This may or may not be part of the reason she isn't gaining weight. Iron helps you absorb nutrients from food and if her are low, her body is just spitting stuff back out. She eats tons and doesn't gain. She gave us some sample liquid iron supplements to try and I have a good feeling about it.
This afternoon Ayla goes for her first massage appointment. A number of people thought it might be beneficial to her. There is a mother of a little girl that plays hockey with Ezra who is certified with pediatric massage, so she's going to see what she can do. I'm praying that Ayla will let her touch her...even just a little bit and hopefully build up. She is starting with one arm, so we can compare and see if there is any change after a few weeks.
We are still waiting to hear back when her MRI will be. It will be before December 17th b/c that's when we go to Children's Hospital in London for the results of it.
Sometimes i get concerned about how many times Ayla has been sedated. And how many times she has had the radiation from xrays, ultrasound, mri's, ctscans, and many other tests she's had. It usually isn't a blip on the radar, but sometimes...my heart and head get heavy with those thoughts. I know God has good plans for her, so i try and put those things out of my head and not worry and just TRUST.
Ayla is very much excited about Christmas this year...as are we all:) It will be a much happier time than last year....Praise God for that:)
Lacy
Friday, November 19, 2010
Wednesday, November 3, 2010
Ayla-"not perfect"
Praise God we are back from Sick Kids in Toronto! Ayla had 2 appointments on Monday. One with dermotology and one with the lead Rhuem and her following Rhuem. Then we spent the night at our special cousins (Thanks guys) and then a night in Sarnia with Ryan's parents. We are happy to be home and resting but had a nice time visiting...other than the hospital. But that was okay too...thank God:)
I was under the impression that Ayla was "back to normal" with her meds. But i was wrong. I didn't realize they would have a whole game plan when we got there. I just thought it was a follow up to see the progress she has made. That it was...but then more stuff too.
We saw the derm first. She was..."impressed" in a negative way with Ayla's skin and under laying of fat, fascia. She has never seen anything like this through a persons whole body, only in one or two limbs and in someone as young as Ayla. She could hardly believe that it was actually worst than it is now...but it was, much. She suggested a few things but wanted us to meet with the Rhuem and then they would have a chat after and decide what the next step should be.
Then we saw her Rheumatologist and the Head Rhuematologist. They both were happy that she was moving around and had less joint stiffness, but still lots in their eyes. She's gained just over a pound back from her 5lb weight loss at Christmas last year when she was gravely ill and she has grown almost 2cm in the last year despite steroids. (Still at the very low end of the "percentile" scale, but some is better than none.) They want to change her weekly oral meds to a weekly injection. It usually works better for inflammation if it's done by injection. So hopefully that would help since she is still, in their words, "not perfect." Along with the injection they would like to try a different drug that's only been used for a disease like this a "few" times. Her words were, "not 10, not 50, not 100 and certainly not 1000's of times, but the few times it has been used it's shown success." This drug is one that she has to get approval from the govt for and see if we can get covered for since it's one we don't have coverage for otherwise. Apparently it will take her a while (maybe 1-2 months) to get that done so in the mean time we are praying that the present med by injection will cause major improvments. We will ask more about the side effects when we see her in December and see if it's worth it.
Also, she has requested a lower MRI for Ayla. She could do whole body but she should get what she needs by just doing lower legs. Ayla will have to be sedated for that. That will be done in the next month, before our next appt with her mid december.
We have to get Ayla's bloodwork done in the next week or so and also begin injections. We will have to change the day Ayla gets her meds b/c it will take both Ryan and I to do injections, so it will have to be on weekends.
Hopefully Ryan will be home soon from Owen Sound now that's its nearing season end. We miss him lots and it will be good to have him back home.
Ezra's bad dreams have gone away. He's sleeping much better now. Ayla has good nights and bad nights. She has a cold now. Everytime she is sick we pray that her body can fight it since her immune system is compromised. We will be taking her to our naturopath next week to start some immune boosting supplements.
I guess that is all for now. We will be spending a lot of time in prayer over this new medication they want to try.
In the meantime, Ayla's feet have grown and she got new running shoes. She's "running" now...as much as she can. And she's super cute when she does it. She also can jump with a little assistance:) I'm very thankful for how resilient she is. I was teary on Halloween b/c last halloween was a sad one. It was right at the begining when Ayla started to get sick and she did not have a good halloween. But Praise The Lord, she had lots of fun dressing up and trick or treating and watching Ryan and I (do all the work) carving pumpkins. This Christmas we have a lot to be thankful for as it's approaching. Ayla is healthier and happier and so are we. It will be a joyful time with lots of things to be thankful for...just as always but a special time to remember:)
It's hard for me to think of how ill she was...those memories are difficult so i'm thankful for new ones.
Thanks for the love and support over the past year (almost).
God Bless all of you!
Lacy
PS i should note, no one came in except for her doctors:) PTL for that:)
I was under the impression that Ayla was "back to normal" with her meds. But i was wrong. I didn't realize they would have a whole game plan when we got there. I just thought it was a follow up to see the progress she has made. That it was...but then more stuff too.
We saw the derm first. She was..."impressed" in a negative way with Ayla's skin and under laying of fat, fascia. She has never seen anything like this through a persons whole body, only in one or two limbs and in someone as young as Ayla. She could hardly believe that it was actually worst than it is now...but it was, much. She suggested a few things but wanted us to meet with the Rhuem and then they would have a chat after and decide what the next step should be.
Then we saw her Rheumatologist and the Head Rhuematologist. They both were happy that she was moving around and had less joint stiffness, but still lots in their eyes. She's gained just over a pound back from her 5lb weight loss at Christmas last year when she was gravely ill and she has grown almost 2cm in the last year despite steroids. (Still at the very low end of the "percentile" scale, but some is better than none.) They want to change her weekly oral meds to a weekly injection. It usually works better for inflammation if it's done by injection. So hopefully that would help since she is still, in their words, "not perfect." Along with the injection they would like to try a different drug that's only been used for a disease like this a "few" times. Her words were, "not 10, not 50, not 100 and certainly not 1000's of times, but the few times it has been used it's shown success." This drug is one that she has to get approval from the govt for and see if we can get covered for since it's one we don't have coverage for otherwise. Apparently it will take her a while (maybe 1-2 months) to get that done so in the mean time we are praying that the present med by injection will cause major improvments. We will ask more about the side effects when we see her in December and see if it's worth it.
Also, she has requested a lower MRI for Ayla. She could do whole body but she should get what she needs by just doing lower legs. Ayla will have to be sedated for that. That will be done in the next month, before our next appt with her mid december.
We have to get Ayla's bloodwork done in the next week or so and also begin injections. We will have to change the day Ayla gets her meds b/c it will take both Ryan and I to do injections, so it will have to be on weekends.
Hopefully Ryan will be home soon from Owen Sound now that's its nearing season end. We miss him lots and it will be good to have him back home.
Ezra's bad dreams have gone away. He's sleeping much better now. Ayla has good nights and bad nights. She has a cold now. Everytime she is sick we pray that her body can fight it since her immune system is compromised. We will be taking her to our naturopath next week to start some immune boosting supplements.
I guess that is all for now. We will be spending a lot of time in prayer over this new medication they want to try.
In the meantime, Ayla's feet have grown and she got new running shoes. She's "running" now...as much as she can. And she's super cute when she does it. She also can jump with a little assistance:) I'm very thankful for how resilient she is. I was teary on Halloween b/c last halloween was a sad one. It was right at the begining when Ayla started to get sick and she did not have a good halloween. But Praise The Lord, she had lots of fun dressing up and trick or treating and watching Ryan and I (do all the work) carving pumpkins. This Christmas we have a lot to be thankful for as it's approaching. Ayla is healthier and happier and so are we. It will be a joyful time with lots of things to be thankful for...just as always but a special time to remember:)
It's hard for me to think of how ill she was...those memories are difficult so i'm thankful for new ones.
Thanks for the love and support over the past year (almost).
God Bless all of you!
Lacy
PS i should note, no one came in except for her doctors:) PTL for that:)
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