I'm begining to wonder if winter really is going to come this year...now i may be eating my words now that i've said something, BUT WHAT IS GOING ON!? We were actually in the yard playing driveway hockey with sweaters on earlier this week...bizarre.
The last time i wrote was almost 2 months ago, right before Christmas!
I hope you know, "no news is good news."
I figured i would write now to let everyone know that we are heading to Sick Kids on Monday for a few specialists appointments. The plan is to evaluate her to see if this experimental medication is working.
There was some misunderstanding between the everyone and the pharmacudical company. We all thought Ayla would be treated for 6 months, but it was 5 doses or 6 months. That said her 6 and final dose before an evaluation was supposed to be tomorrow...but it won't be happening.
If we get to SICK KIDS and they decided that the treatment should be continued, a laps of the week or so it will take for govt and pharm to approve funding, should not be a big deal apparently.
So Monday we will find out whether or not this medication is working. We haven't noticed a huge difference in the feel or texture of her skin, nor have her therapists but the doctors will be the judge.
One thing that a number have people have began to notice is how much happier she is! It wasn't long ago when i had a conversation with one of her therapist and something i had observed but never said out loud was brought up, "she doesn't seem to have any joy..." And that was the honest to goodness truth. We all knew it. But i'm happy to say that the overall consensus from teachers, therapist, family, and friends is that Ayla is a happy, fun, chatty little girl:) She's finally breaking out of her fearful shell and having joy! That will certainly be something we bring up at Sick Kids. Whether it's because she's feeling better physically, or if she's just finally healing emotionally...we don't know. But thank the Lord...because this is another miracle. My heart broke when i knew our wee girl had no joy...and my heart leaps to see that joy there! Finally!
Ayla's last treatment in January went horribly, it was the worst one...i would say since we first began our admissions over 2 years ago. Then, Praise the Lord, a nurse we have worked with before had just come on shift and came right in. She was so nervous and really wanted to get the needle in her first try. We all actually prayed just before she did it, and she got it! After 2 very long and agonizing pokes with a nurse that just would not say, "i can't do it," nurse Robin saved the day! Poor nurse Robin. She was shaking so badly she couldn't even tape up the IV line. We love her, she is so kind hearted:) It's so funny how quickly you can connect with people in the midst of pain...that's certainly another thing we have learned over the course of these last 2 years.
Ayla's 4th birthday is coming up on February 18th! I can't believe she'll be 4! We will be having a little celebration with her. I desperately want her 4th birthday to be joyful for her...and those that love her. I look back and don't have great memories of her 2nd or 3rd birthday. Her 2nd birthday...was a couple months after she became ill. She was emaciated, sad, in pain, immobile, she did not smile or laugh the whole day, presents and all. And last year, her 3rd birthday, she fell and broke her leg...for the 3rd time (the last time, thank goodness). So as shallow as it may seem, i really want her to just have a fun day. Not a big fancy, over the top, shin dig; but just the people close to her that have seen the miracles happen in her short life all together to wish her a HAPPY 4th birthday!
Thank you all for following my emails and updates over the last more than 2 years now. We are thankful for all the prayers and love and support. We will let you know what the outcome of Monday is.
I'm going to send you a picture of Ayla...she's ICE SKATING! Yes, you read that right. She's learning to skate...and loves it. I try not to cringe when she wobbles, but daddy is usually right behind her to catch her before she falls.
Blessings to all,
Lacy
The last time i wrote was almost 2 months ago, right before Christmas!
I hope you know, "no news is good news."
I figured i would write now to let everyone know that we are heading to Sick Kids on Monday for a few specialists appointments. The plan is to evaluate her to see if this experimental medication is working.
There was some misunderstanding between the everyone and the pharmacudical company. We all thought Ayla would be treated for 6 months, but it was 5 doses or 6 months. That said her 6 and final dose before an evaluation was supposed to be tomorrow...but it won't be happening.
If we get to SICK KIDS and they decided that the treatment should be continued, a laps of the week or so it will take for govt and pharm to approve funding, should not be a big deal apparently.
So Monday we will find out whether or not this medication is working. We haven't noticed a huge difference in the feel or texture of her skin, nor have her therapists but the doctors will be the judge.
One thing that a number have people have began to notice is how much happier she is! It wasn't long ago when i had a conversation with one of her therapist and something i had observed but never said out loud was brought up, "she doesn't seem to have any joy..." And that was the honest to goodness truth. We all knew it. But i'm happy to say that the overall consensus from teachers, therapist, family, and friends is that Ayla is a happy, fun, chatty little girl:) She's finally breaking out of her fearful shell and having joy! That will certainly be something we bring up at Sick Kids. Whether it's because she's feeling better physically, or if she's just finally healing emotionally...we don't know. But thank the Lord...because this is another miracle. My heart broke when i knew our wee girl had no joy...and my heart leaps to see that joy there! Finally!
Ayla's last treatment in January went horribly, it was the worst one...i would say since we first began our admissions over 2 years ago. Then, Praise the Lord, a nurse we have worked with before had just come on shift and came right in. She was so nervous and really wanted to get the needle in her first try. We all actually prayed just before she did it, and she got it! After 2 very long and agonizing pokes with a nurse that just would not say, "i can't do it," nurse Robin saved the day! Poor nurse Robin. She was shaking so badly she couldn't even tape up the IV line. We love her, she is so kind hearted:) It's so funny how quickly you can connect with people in the midst of pain...that's certainly another thing we have learned over the course of these last 2 years.
Ayla's 4th birthday is coming up on February 18th! I can't believe she'll be 4! We will be having a little celebration with her. I desperately want her 4th birthday to be joyful for her...and those that love her. I look back and don't have great memories of her 2nd or 3rd birthday. Her 2nd birthday...was a couple months after she became ill. She was emaciated, sad, in pain, immobile, she did not smile or laugh the whole day, presents and all. And last year, her 3rd birthday, she fell and broke her leg...for the 3rd time (the last time, thank goodness). So as shallow as it may seem, i really want her to just have a fun day. Not a big fancy, over the top, shin dig; but just the people close to her that have seen the miracles happen in her short life all together to wish her a HAPPY 4th birthday!
Thank you all for following my emails and updates over the last more than 2 years now. We are thankful for all the prayers and love and support. We will let you know what the outcome of Monday is.
I'm going to send you a picture of Ayla...she's ICE SKATING! Yes, you read that right. She's learning to skate...and loves it. I try not to cringe when she wobbles, but daddy is usually right behind her to catch her before she falls.
Blessings to all,
Lacy
Have you guys ever thought of trying EMLA cream? I use it for dialysis, generally I can tolerate needles but dialysis needles are huge and so I put EMLA cream on before I go in for treatment and it numbs the area where they have to poke me. I also tried an ethyl chloride spray but because I have eczema it made my skin break out, it did it's job but I couldn't stick with it. Anyway, glad to read that she is doing well and I hope she has a wonderful birthday!
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