Ayla's beads that she got today. The hospital in Windsor adopted a new program from the States.

The two bigger colorful beads are for each 100 (so 200 b/c there are 2) pokes, procedures, surgerys, xrays, testing, home injections, etc that she has had in the past. Now we have a tracker so we can track what beads she will get. Makes it kind of fun, all the colors:)

The the small black one is for a poke today, and the small purple an infusion treatment. Each time she gets something done she'll be able to add certain colored bead depending on procedure. It's very cool. They do a similar thing with Bravery Beads for kids with cancer.

Lacy

Ayla update-results

I wrote out a whole update and then our power flicked off and poof...it was gone!

They decided to keep Ayla on the experimental medication for 6 more doses. They didn't notice a HUGE difference, but a bit, so they will check again in 6 months. If there isn't a measurable difference after that, then we think, regaurdless, we will take Ayla off.

It was a while before we heard back b/c the doctors had to apply for more funding for us, in order for Ayla to recieve this $1100/dose medication. Thank the Lord, the funding is given for 6 more compassion doses.

She goes in tomorrow for a treatment and then once a month for the next 6 months.

That's all for now! Her birthday is this saturday! She will be 4 and is super excited about it (as am i!!). She's happy and healthy and looking so forward to a fun birthday:)

Lacy

update 2-17-12

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