Undiagnosed Disease Program Update

The past couple months have been overwhelming to say the least... I've probably said that already. I'm really struggling to find my bearings and even stay totally present in conversations. Layla's actually been sleeping better (*knock on wood) generally and that has been great but I am still completely exhausted both physically and mentally. Getting to know the nurses who will be working regularly with Layla has been amazingly helpful. But also sad for all the support we didn't have for so long. Sharing our story of the transition from Ontario to BC specifically has shown concern. We are so far behind when it comes to specialists and support. These things should have been in place right when we got here but have taken well over a year to start happening.. Yesterday I had one of those distressing episodes. I was calling multiple specialists regarding Layla's new suction machine we are getting for home (to help manage her secretions and vomit, so that she doesn't have as high of a risk of aspiration), and each one said they weren't the right person to talk to but couldn't direct me. Finally I did figure it out, but I just kept thinking, It shouldn't be this hard to just get some questions answered. I should know exactly who to speak with about this. But I don't. That feeling of someone else's wellbeing being completely on your shoulders can be hard to bear at times. I spoke with the nurse and Layla OT and Speech Therapist about this and they are going to follow up on our referral to complex care at Children's. Apparently that is part of their role, to help parent navigate who to talk to and when and answer questions. So yay! Can't wait until that is through.
Anyways, that's my beef, but back to the update. We spoke with the Undiagnosed Disease Network (I am just going to type UDN from now on), going through our consent forms. Once the consent forms arrive back in California then they will send up all the vials and things we need to all get our blood work done. Once the three of us have gotten that done, it will go back down to California for them to start their research going through each of our genomes. This will help them decide exactly which tests they want to do when we are on site. Because of the order of events we will not be going down to California until late spring. Surprisingly I wasn't at all upset that the date is much later than we originally had though. With the amount of things that have been going on lately I'm very happy to wait. Plus, it's not like they're not working on Layla's case during the wait time. They are.
They're hoping to find the funding to pay for all three of us to go down. Normally they only cover one parent and child and require them to get to a major american city but our contact said he's going to try and get all three of us covered and fly us from Vancouver. If we do have to pay for one parent, it is only to LA now, which is usually not too expensive, given the shorter distance. We will come up with the money.
When I asked how many patients they've had go through their site at UCLA I was insanely surprised by the response. 25. Only 25 people have gone through the program at this site. Granted they have 7 other locations across the states but still.. This is an international program.. anyone, anywhere in the whole world can apply there and Layla is going to be the 26th. Talk about mind-boggling. Obviously, I don't understand how rare Layla is. To put it in perspective, there are approximately 500,000 people are living with cerebral palsy and 400,000 people living with down syndrome in the US alone (thanks google).. and we don't know any one other person like Layla. Sheesh eh?
It makes me nervous to go down to the states but still so intrigued. What the heck are we going to learn about this girl?

Burger and Brew

Tossing and turning in bed. I have barely slept. I can't. The events of last night keep replaying in my head and am completely overwhelmed. The burger and brew fundraiser for Layla's wheelchair van took place last night. And it was a huge success. Thank goodness I am not driving in to Layla's appointment in Vancouver this morning. A couple tea stops will be happening.
Rewind only a couple of months when we decided to start fundraising. First off, even the fact that we are where we are, needing a van for our daughter is a big deal. That we do see a future for her and want to maximize for that future. When we came around to the idea, Aaron and I didn't originally want to do a go fund me because we felt awkward asking people for money when they wouldn't "get" anything in return. We warmed up quicker to the idea of having a pub night with auctions and raffles so that people would not only feel good about giving to a good cause but they would also "get" food, drinks and prizes. It is a truly humbling experience to ask for financial support.
To begin with, I didn't think we would be able to sell all of the 60 tickets. Then when the 60 tickets were almost accounted for, we called the location to ask if we had any flexibility with that number. Then they told us we could have max 70. Going into the event last night we sat at 74 people coming. That meant myself, Aaron and my brother/sister in law would go without the burger and brew portion. I figured there would be a few no shows to bring us back down to 70. I didn't get a chance to do a final headcount last night but I'm positive we had at least 85-90 people show up! They just kept coming in!
Being somewhat immobile, I wasn't able to mingle quite as much as I would've liked but I literally had a birds eye view over the event. People seemed to enjoy themselves and everything went incredibly smoothly. No hiccups, other than making sure we had enough seats. And one poor soul putting their Westjet raffle ticket stub into the wrong spot... The location was perfect.
We came out with a whooping grand total of $5006!! We have to confirm our charity money coming in and get our jeep up for sale to confirm how much we have left. But it's looking like only a couple thousand at this point! I never thought we would get this close. The fact we won't have to finance a second vehicle is a huge weight off our shoulders.
Finishing off the post on a beautiful note. The biggest, most generous donation award also came in last night. I didn't speak directly with this sweet girl, nor her dad but when we got home to count the profits there was a zip lock bag of change. Apparently when a friend of ours told his daughter where he was going to last night she said that she wanted to donate to the cause. When asked how much she would like to give, she stated she would like to give $3. While getting the funds out of her piggy bank, she changed her mind and said she wanted to give everything she had. Everything. Every last cent to her name. *Pause* Unreal. The most emotional donation for sure. This example of true, unselfish love. I'm honestly not even sure this girl has ever met Layla. To witness someone give like that with no expectations, no strings attached. It is so beautiful, heart melting and rare. I will never forget that. May this story motivate all of us in the way we live. This life is short. You can't take money or things with you. The people, the love, the moments, that is what it's all about. With a grateful heart I close this post.

"If you are broken, you do not have to stay broken."

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.