More bloodwork..

Almost 4 months ago to the day we were told about the possibility of Layla having a mitochondrial disease. We have been waiting since then on funding approval to further look into if this might be where Layla's diagnosis lies. This morning I received a phone call that the funds are now available and we can start down this rabbit trail. Layla and I have to go get, yet again, more bloodwork done next week and this time it will be sent to a lab in Atlanta. Thankfully they are letting us get it done locally so I don't have to do the drive in and out of Vancouver. We will go to the Mission hospital where we had a good overall experience last time (when is bloodwork actually good, with a 2 1/2 year old). Hopefully we can have the same group of ladies helping us out. Last time it was only a matter of 5 minutes before I was able to get the smiles back on Layla's face.. in between sobs.
I'm happy to hear that the biochemical diseases program at BC Children's is still wanting to work with us evening though we've been accepted to the Undiagnosed Disease Network in the states. I had been feeling a bit like we were passed off to someone else and they weren't willing to do any more until we've completed our stay there. So that is encouraging. Any progress is good progress. Whether it is eliminating or discovering.  
Shortly after we were told about the mitochondrial possibility, we started Layla on a few new vitamins to see if they would help give Layla more energy. And I honestly do think they have helped. She had a set back with being sick for an extended period this winter but overall she has had more energetic periods through the day than ever before. She is so much more alert and active. She seems to be recognizing familiar songs, voices and activities.
Yesterday I picked up Layla from a four night respite stay. We took two nights to have a getaway of our own up to Okanagan. It was so relaxing. We visited a few wineries, went snowshoeing and relaxed at the resort that had a bunch of steamrooms, saunas and a gorgeous infinity pool overlooking the lake. We were in bed super early both nights, got an opportunity to work out at the gym, have peaceful, delicious breakfasts. It really was good for us. But the biggest change I noticed for me was that I actually wanted to pick up Layla early. I missed her that much. In the past, I've been so exhausted from caring for her that I longed for that time away. It was such a necessity. But this time, I really wanted to have her back. The van felt empty with out her, the house seemed weird. She is just so much more enjoyable to be around these days. I wish I could've had these feelings a lot earlier on with Layla but either way, I'm thankful for them now. 

Becoming Human

I just finished this book called "Becoming Human" by Jean Vanier. Jean is the founder of L'arche, an international network of communities for people with intellectual disabilities. I highly recommend it for anyone interested in a new perspective on people with disabilities.

"So many people with disabilities are seen by their parents and families only as tragedy. They are surrounded by sad faces, sometime full of pity, sometimes tears. But every child, every person, needs to be celebrated. Only when all of our weaknesses are accepted as part of our humanity can our negative, broken self-images be transformed."

Whoa.. it's so sad but speaking from personal experience, so true.

Sometimes I will feel sorry for myself and all the extra responsibilities it requires to care for Layla. When overwhelmed with appointments and simple tasks made difficult such as having to carry her up and down the stairs, and consistently entertaining her, I get frustrated. It's quite selfish, really. Focusing on how bad this is for me. But lately, it doesn't take long before I have these "a-ha" moments, where I take a step back and look at how far she's come. I'm so thankful for her and her personality. I'm trying really hard to celebrate her on a regular basis. She deserves to be celebrated.

Unlike a typical two year old Layla needs you to present opportunities to her. She is not able to grab your hand and pull you over to the toy she wants to play with. If not given the opportunity she would be fairly content just laying on the couch over your lap, if you acknowledge her every so often and hold her hand. BUT given the opportunity to do more, we are seeing that she is actually quite a bit more capable than you would think. For example; we have sung head and shoulders to her since she was a small baby. I think she enjoys having other people move her limbs for her because it is so difficult to do on her own. In the last month or so, if you go through the first verse -"head and shoulders, knees and toes, knees and toes, knees and toes.." and then stop and wait, we have noticed that sometimes she will start to move her hands up only the slightest, to try and get them up towards her head and let us know she wants to continue. This probably seems so small, but I think it's truly a miracle. At first I really doubted that that was what she was doing (and sometimes I still doubt) but I've begun to decide that it is important for us to encourage and believe in her. What harm is it if I'm incorrect? Maybe it is an involuntary movement. But how encouraging is it when we do believe? Who knows what is going on in her brain development?

I saddened for others who don't get the opportunity to see her in her elements. When she's at home and laughing her head off at my fake cough, or smirking at the wind blowing on her face as she pull the fan from her toy. When she looks you in the eyes and smiles... there is nothing like it. Life has not been easy for her but it's only getting better. With us taking that extra step to think of what we can do to help her communicate and be involved in whatever everyone else is doing I want to see her flourish. May she teach me to love more, have more patience and just be a better human being. 

Watch a movie with her cousin :) 

New Year, new generosity.

Happy New Year. First post of 2017. I'm actually excited for this year. I feel like a lot of good things are going to happen. With 2016 ending fairly positively in our lives, it has given me hope for a season of rest and allowing some hard work to be paid off. Layla has been doing so well lately. Sleep has been fairly consistent with a 6-7 hour chunk at night.. whoot whooot! That alone makes a world of a difference.
Layla has stayed so healthy through this winter, knock on wood it will continue that way. She barely has had colds and NO hospital stays. Last winter, I swear she was sick the whole time.
Next week we're getting trained on a suction machine to have around the house when Layla is choking on her secretions or vomit. This will help take away the stress for her and us when she is struggling to get these liquids out of her mouth and throat. These episodes have been a bit more scary the last couple months.
We have the van in our hands which has been a total life changer. We are so thankful for everyone that has given toward this van. Never will I forget the generosity of others because I will look at the van and know we couldn't have done that on our own. The plan is to pay the van completely off in the next couple months. The Salt Spring Island Driftwood newspaper just printed a story about the need for our van. Plus, the second burger and brew at the end of this month should bring us pretty close.
In other news we were chosen by a family, through Canuck Place, who recently lost their 9 year old son to be given a pretty fancy hospital bed (we're talking $10,000 fancy). Obviously it's horrific what they have been going through in the last couple months... and it hits a little too close to home.. but they are so generous in deciding they would give away his equipment to other families. They said they understand the need and cost involved in raising a special needs child and couldn't imagine trying to make money off of those things. The bed is coming from Kamloops and at first we were quoted $800 to have it delivered by a moving company. Which was really disheartening.. but then she posted on a community site and a company that was coming down for a conference in Vancouver said they would attach their trailer, pick up the bed and deliver it FREE of charge. Wow. Again, communities are amazing. They are dropping off the bed today! Fingers crossed they can get it up all the stairs (we really didn't think that through when we moved in almost a year ago, I mean Layla was so small and light still then). The bed is 250lbs. Another heavy thing to add to our home. But this should only help with sleep. Having the electric incline for the head and foot will help Layla be the best supported through the night and help keep reflux at bay. The mother told me it made the world of a difference for her sons sleep.
Layla is getting a new manual wheelchair in the next couple of weeks.. which will make transportation even easier. Then in a couple of months we will be having the trip to UCLA... I feel like the list keeps going.
I'm feeling some peace and joy in my heart that I haven't had for a while. And oh man, I hope it sticks around. What else will 2017 bring?

Christmas

Three day countdown until Christmas. I have to say I'm the most excited I have been for it in a few years. The last two years, Layla was so much more fragile. She cried so often that we had to take turns rocking her to keep her content. I don't think Aaron and I both got to sit down and enjoy a meal or a full family game at the same time. Our family stepped in to take turns giving her a rock or leg shake to get her to sleep. It was so exhausting. But this year, it's going to be so different. Layla has changed. She is a different girl in so many ways. In the last month of appointments every single doctor and therapist has talked about how happy she is, how content she is within her self and how she is not at all the same girl she was months ago. She has consistently been moving up. It's been such a sigh of relief. I have to fight off the scared feelings of thinking it'll just be a faze. That it cannot possibly last. But what if it does? What if she stays this happy the rest of her life? What if all our hard work, sleepless nights, tears and prayers are actually paying off?? 
It's a hard but delicious pill to swallow.
This year I'm imagining her sitting in her seat on more of an eye level with the other kids. I'm imagining her doing her full out belly laugh for people. I'm imagining her reaction to us all enjoying each other's company. She's recently become so reactive to kids toys, something we have never seen.
Yesterday I had a team of therapists over to work on adjustments for Layla's home equipment. They added a new arm sling for her to take away gravity so she can work easier at pressing buttons and pads. We're starting to look at ways she might learn to communicate in the future. They all loved seeing her reactions when she presses a switch and Olaf sings his song. He is her favourite toy right now. And I believe her reaction is not just the music playing, but also the fact she is so proud of what she is doing, on her own. It is so big. And I couldn't be more proud.
Oh the places she'll go.

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.