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.

Limp

Aaron and I have made it a priority this year to each play a sport to get exercise, be social and do something for ourselves. It has been fantastic. Gives us each something to look forward to in the week. I didn't predict that it would actually make things harder. On Sunday during my game I got taken out by another player and sprained my ankle pretty bad. It's double the size and all black and blue. Unable to put any weight on it the last few days has make it so difficult to do anything. I'm hopping on one foot to get to and from the washroom and the fridge where my wonderful husband has had all of Layla's food bags and meds set up for me.
Thankfully I have nursing support set up for the mornings for 2 hours for the rest of the week.. our very last week of it, so that she can bring Layla down from her room upstairs to the living room, where we will stay the rest of the day. Praying I'll be able to at least start limping on the leg tomorrow to feel more useful and less lazy. We can't afford to have Aaron take any time off work so we have to make this work without him taking sick days. It's a great reminder for how important it is for me to be healthy for Layla. Also how much we need help.
Last week we had an assessment done to decide if we deserve regular nursing support. We had multiple professionals and non professions say that we deserve this support and should have it in place. So I had my hopes up. Of course the meeting was quite emotional, having to focus are the hardest parts of Layla and her medical/diagnosis/every day journey. Something I don't like to focus on too much. Right in the meeting the women told me that at this time she didn't believe we would qualify. It hit me hard. I started crying.. And I almost never cry in appointments and meetings. (I usually wait until I'm alone.) She felt bad. She said that she could 100% see that we do need help. But it is really hard to qualify for nursing support and she didn't want to get my hopes up. She promised she would call my social worker to see if she had any other ideas. Then yesterday she stopped by to give me a copy of the assessment and shared that she will be presenting our file tomorrow and that is when the decision will be made. I get the sense that she wanted to give us another opportunity to add to our case because she said "If you can think of any more reasons why Layla needs the support of a nurse vs a caregiver please email me by Tuesday so I can add it to the report."
Thankfully I have a nurse here today, who thought it was ridiculous that we wouldn't qualify, so I told her I need her help to come up with a few things. Reasons why her job is important. Fingers crossed we can come up with just the right words to convince these people.
The hard part is I don't want to have my hopes up, yet again, to only be crushed. Every week it seems there is a new roller coaster ride on this journey. It's hard to know where to put your energy and to fight and when to throw in the towel and say this door is closed.

Go Fund Me

We are trying to get some funds together to go towards the purchase of a wheelchair accessible van to get our sweet girl Layla out and about with ease. If you feel lead to give towards our cause we would be so very grateful. Please take a moment to watch the video and read our write up, then share this page to spread the word, if you feel so inclined. Thank you for all the love. For real.

https://www.gofundme.com/laylavan?ssid=773354427&pos=1

Mito-what?

After a recent appointment with Biochemical Diseases and Genetics I've been sitting with a heavy heart. Probably partially heavier because Aaron was away and I wasn't able to vent fully over the phone. The latest route they are wanting to go down for diagnosis is a possible mitochondrial disease. I wrote last about this mitochondrial cocktail that was prescribed. I had a lot of questions so we booked this appointment to get some of them answered.
Honestly, it felt a bit like a science class. There was even diagrams drawn. They explained to me cells and DNA genes and the first 25,000 that they looked through and found no notable abnormal genes. Then they moved outside the nucleus to the mitochondria. Mitochondria are responsible for the energy we need for every organ in our body. I guess there was something noted that at first they didn't believe could explain Layla but now they are second guessing. This mitochondria is passed on solely from the mother and not the father.
That in itself is a hard pill to swallow. Ugh.. now it's not both of us, it's just me.
The sad stat with mitochondrial Diseases is that they are passed down to children 100% of the time. Whether or not they show symptoms and the severity is another thing.
So now they're in the process of applying to get more funding to test blood work of Layla and myself.  If she has more abnormal mitochondria than me, that could explain why Layla is the way she is. If she has less than it would not be the explanation and we'll be back to the drawing board. By we I mean they.
The downside to the cocktail is that because it is high dose vitamins, and our lovely government will not fund any natural prescriptions, only unnatural ones, we have to pay out of pocket. Obviously if it'll help we will figure out the funds. But if it doesn't help we don't want to spend the money for nothing. So for now, we're going to order the perscription, trial it for 6 months and see what difference it makes.
Sometimes I have these out of body type experiences when I'm sitting with these specialist and talking about the medical side of things and just shake my head. I never thought in a million years I would know the things I know without signing up for med school. It's overwhelming at times to try and separate motherhood with medical motherhood. Reminding doctors that we're talking about my daughter here, not a lab rat. But while wanting to try anything and everything we can to keep Layla happy and healthy. I am forever changed.

Give her an inch

The power wheelchair is finally up and running! Her custom seat is all set up for it. Wednesday the seating and mobility team showed up with our physio and OT. They said "She might not pick it up right away. But with practice hopefully she'll get the hang of the control and movement." But she moved it, pretty much right away! She did little movements across the living room. Oh my heart! It was so amazing to see. We were all so proud. Everyone had their camera's out, video taping her, cheering her on.
It gets me back to the reminder that we have no idea what's going on inside for Layla. We don't know where her mind is at, what her potential is. We have to give her more opportunities to show us just go far she can go. Give her an inch, so that she can take a mile, I say.
For now she has to ride around the living room because we don't have the ramp built yet to get it outside, nor the van to go even further. But she only needs the small space to begin with. Once my walls start getting dented.. then that's a different story.
On the medical diagnosis side-I received a phone call today from the doctor who applied for us to go to the undiagnosed disease program. She had just been in contact with them about Layla. They had expressed some concern in sending her to the National Institute of Health. First off they were worried about having someone like Layla travel on quite a long journey to Washington DC, including connecting flights. We would not want any medical issues to happen up in the air. The other worry is that the NIH does not have a pediatric ICU only an adult one who won't take children under 12kg (Layla's only 10kg).  They said if she is put under sedation, which she would be for multiple of the testing they would do, it would be too risky to have her there. That being said, they asked if we would consider going to another one of their sites, UCLA. The flight is a lot shorter and they are equipped with a pediatric ICU, Yay! I said, of course! We just want to see this happen. Doesn't matter which site. We are not ready to give up yet. So now she has to get back to them, find out their wait time, yaddy yadda..
In the meantime, they have decided to start Layla on a mitochondrial cocktail. It's basically a high dose multi-vitamin made just for Layla. Potentially, it could help with giving Layla more energy and thus more strength. We're up for anything! I just read an article about a new drug that has recently come out that can help kids tremendously who have SMA type 1. It was an incurable, life-limiting, genetic disease, prior to this drug being approved. It gives me hope that there could be something out there that can at least help Layla enjoy a longer, happier, healthier life.

Who you know.

The small amount of sleep Layla gets on a regular basis has always been a concern. She gets no where need what a child her age should be getting. We know part of the issue was/is reflux. When she started reflux medication in February, her sleep got a bit better. But it's still not great. Now Layla's therapists have been questioning Layla's breathing patterns. Wondering if lack of oxygen at night could be part of the reason she wakes frequently.
We brought up the issue with the pediatrition and she agreed to get her on the waitlist for respirology and ENT (ears, nose and throat). I called the respirology clinic to check in on our application when she told me that they hadn't received the referral. But stated that it would only be about a months wait if we got it in as soon as possible. So I got a hold of the doctor and asked her to re-send the forms. Then when I called again to check that it was received, I was now told it would be a 10 month wait! No idea how that changed so quickly but I was discouraged. Isn't breathing is a serious issue? You would think that there would be a high priority to get in right away if there is concern.
The really frustrating part for me was that we had both respirology and ENT doctors when we were in Ontario. They were supposed to put the referrals through themselves when we left there over a year ago now. I guess that never happened. And obviously we had gotten busy with other specialists and priorities that we hadn't ensured that those referrals were put through. So I guess that's sort of on us for not confirming.
The therapists suggested that we might need to take Layla into emergency at the children's hospital so that she could be seen sooner. Unfortunately that is the one way to avoid long wait times. Not ideal, but that's life. While mulling over the thought of doing that a new friend of mine who is all to familiar with the hospital and specialist world with her son got involved. She had noticed similarities between Layla's symptoms and her sons when he needing to start on the bi-pap machine while sleeping. While at BC children's last week she saw the respirologist and explained our situation and the wait time. He wrote down Layla's name and said to tell me to call and book an appointment ASAP. We got in Friday. Going from a 10 months wait to a 2 DAY wait. Isn't that insanity? How can it be? The only thing I can put it down to is that it's all about who you know.
I'm very thankful for this new friendship. She is almost 2 years ahead of us in her journey with her son and it's already been beneficial. Not only to have someone who understands the emotional side but also the practical side of life with complex children. I'm starting to realize how important it is to not feel alone through this all.
The appointment went great on Friday. The doctor heard history and what is going on now. He saw the need we have for more help and support through the children's hospital. We were sent home with a sleep apnea kit to monitor Layla's sats over the night. I'll bring it in this week to be reviewed and we will go from there. Even if she does not need to have the bi-pap machine brought home he is going to direct us to where the help is needed.
I explained how I'm currently feeling as though they have us waiting in limbo to find out if the NIH is going to take us on. But while waiting, doing nothing much in the mean time. I will be especially frustrated if we do not get accepted into the program. He agreed. He said the hard truth of that he is slightly skeptical that they will ever find a diagnosis if they haven't at this stage in the game with the amount of testing that has been done. He understands how frustrating it must be as parents to not have more answers as to what the future may hold but unfortunately it's all too common not to have answers. That being said, he said that doesn't mean she needs to be given up on. Symptom management is the number one priority. How can we help Layla live her life at her highest potential and with the most joy? That thoughts been around for a long time but is still so important.
Too often I sit back and just trust the doctors who see her for such a short period of time. But what I'm starting to understand more is that sometimes I need to fight a bit more. If I know there are issues in a certain area I can't let anyone tell me that they are not there. Fight for that second opinion. Use the connections that I do have. I am Layla's biggest advocate and there will always be new battles.