Whirlwind

The past couple weeks have been insane both mentally and physically. With so much going on it's been hard to focus.
So the bad sprain I wrote in the last post, turned out to be a break! I broke through my fibula (rather another girl did). There was lots of thought and consideration but we decided along with the orthopedic surgeon that surgery was the best option for long term health. So last week I had a plate and four screws put in and I had no idea what I was in for. Pain wise- the first few days suucccked. But now it's settled a lot and T3s are keeping me in a fairly good place to get through the days and nights. Aaron took too many days off around my injury to help with Layla and get us to appointments. His aunt was super helpful, girls from my soccer teams brought food and things. It was so lovely and kind. My social worker was able to get some emergency funding to cover a nursing 8-10am Monday to Friday for two and a half weeks (starting today). This will help get Layla downstairs and set up with her morning feeds, medications, vitamins etc. Thankfully they've assigned the nurse who worked with Layla a few hours a week over the late summer/fall so I don't have to actually train her. Bonus.
The day we got the call from the doctor that my ankle was in fact broken, we also got another wonderful call from the nursing support letting us know that we have qualified for 16 hours a week of nursing! Oh man, it was such a huge relief to hear! This had nothing to do with my leg being broken. Saturday I trained my first nurse with this company who will be doing Wednesday overnights for us. She seems fantastic and very qualified. She helped me feel more secure in the fact that we're in the door and hopefully will only ever go up in hours of support not down. Hopefully. Either way, the doors are finally opening. All of the hard work that my team has put in for us, that we have put in.. worth it now. All the tears and stress and overtired fights will hopefully subside. We've made it. I was hitting a point where I didn't know if these days would come. The nurse explained how she fully believes because of the year we were away in Ontario, that is why we've had such a hassle. The BC programs are still figuring out who Layla is. She said we would've been assigned nursing support a looong time ago had we stayed after she was born. I REALLY could've used that help before. But the past is the past, we somehow made it through and we must move forward, happily, knowing that things are going to get easier.
We spent the weekend, organizing Layla's room with all her supplies. Created a nice seating area with a lamp and side table for the overnight nurse to set up. It felt good to have it organized. Even in the four hours training I did Saturday, I learned so many little tips from this nurse on g-tubes, sanitation, physio and splints. I have a feeling I'll be learning much more as time goes on.
The fundraising for Layla's wheelchair van is going amazing. We've seen so much support, it's unreal. Next Sunday is the burger and brew night, that is sold out! President's choice has approved us for a good chunk and still waiting to hear from the variety club charity.
Also (BIG NEWS), amongst all this business, I received an email stating that Layla has been accepted to the undiagnosed disease program at UCLA!! The consent forms are in the mail right now. Then once we fill them out, we will all have to go for bloodwork so they can start their research on us. Then we will book a time to go down for a week or so. I'm hoping for January but who knows. We'll take what we can get. I don't know if they'll be able to find a diagnosis.. but at least we'll know that we tried with the best of the best doctors and scientists. And I have no doubt that we will learn many things from this experience.
I'm sure there are more things.. but that's all I can muster up for now.