Update time

I received a call on Tuesday morning from Canuck Place to offer an extra respite stay for Layla. The last two times the offer was presented I had to decline because of too many booked appointments. This time, I looked through the days and saw nothing that would be an issue for her to miss. So off we went to Vancouver. The timing was perfect. The next few weeks are bringing some bigger events and appointments that will likely bring some exhaustion with them. So I am taking advantage of the quieter times. This biggest goal we set was to get closer to finishing Layla's ramp for the back of our house. This ramp has been a source of a lot of frustration. We moved in November 26th and still don't have fully this functioning accessibility. But since she's been gone for the past few days Aaron has continued to jackhammer the giant rock that was discovered in the back yard- hidden under a rose bush- brought home a pallet of paving stones plus a truck full of sand and he's very close to completing it. I can't take any credit for the work other than cheering him on from the warmth of inside with a cuppa tea.
One of the events we have coming up is very near and dear to our hearts. We were honoured to be asked by Canuck Place Children's Hospice to speak at one of their annual fundraising galas. My initial instinct was to decline for my fear of public speaking. But as I carefully considered the pros and cons it was clear that I should take this opportunity to share. This isn't about advocating for Layla's medical needs to professionals and this isn't about speaking to other parents of children with complex needs. Those speeches would be written quite differently. This is about sharing a snapshot of our lives with influential people from our community who deem this to be a worth cause to support. Of how their generosity has brought sanity to my life.  Each time I sat down to write the words flowed. It brought both tears and smiles. Surprisingly, it was easier to come up with eight minutes of talking than I thought.
Don't get me wrong, I am very nervous. But with the final edited speech done I am praying that I can at least read off the paper at a good pace without any noticeable shaking. If Aaron was writing this he would say he's just praying I will get words out and he won't be left to speak for me. Which has happened in the past.. a couple times.
The undiagnosed disease network is running a few more tests on all of us. It is kind of neat that even though they found a diagnosis, it isn't stopping there. Because Layla is the first to have PCH2d the way she does, the doctor who was leading the investigation is continuing to research on her. I have no idea if anything will come of this but it's nice to know they they want to follow her along.
AND in very exciting news we are all going to Hawaii this year! Layla was approved for a wish through Make a Wish! Initially we fought for her to get a therapy pool/hot tub so that she would be able to do water therapy at home every day. It still seems like the perfect wish for her, but unfortunately after having an electrician come over the $5,000 out of pocket we would have to come up with changed our minds pretty quickly. To pay a hefty chunk of change for Layla to get her wish doesn't make sense. Back to the drawing board we went. After many discussions we decided on taking Layla to Aulani, the Disney resort in Hawaii. There are a lot of pools there, which she will love. They do movies under the stars at night, there will be some characters walking around (which I am not a fan of but maybe Layla is) and the main goal is to created some beautiful memories with our little family. We'll wait to find out at the end of this month if her hip surgery is going to be sooner rather than later which will effect the dates we choose to go.
There's the update on the little miss. Busy times as usual but she's still doing so great overall. Very happy and pretty darn healthy this winter considering how many nasty viruses have been going around. -*feeling thankful.