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.

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.

Two

"She doesn't have SMA but I am assuming that she will have a similar outcome." Those words cut like knives. My heart breaking into a million pieces. I didn't know how to feel. There was some relief that she didn't have type 1 SMA which is basically a death sentence, those children rarely living past two. Then processing that no one knew what her diagnosis was but they saw a similar outcome of us not having her much longer. They told us she would most likely just get worse.. slowly losing all abilities.
Look at her now! She made it to two. She made it to two! It's such a big deal. A miracle really. I'm scared of making it a big deal. Letting myself think forward of how many birthdays she'll have and what she'll be like at each, is a bad road I go down too often. I have to consciously try to STOP thinking of what isn't and think of what is.
Layla is here and is doing so much more than the doctors thought she'd be able to. She can press on the piano on her playmat with her feet, and pull a rope to get a fan moving and can kick at me when I tickle her feet. She can catch my gaze and smile when our eye connect. She can yell and cry at me when I leave her alone and she doesn't want to be (always). And my favourite, she can full out belly laugh. All signs that she is there, she is present and she knows what she's doing. For that I am incredibly thankful. She is a typical two year old in many ways that we often overlook.

Thing are looking up for the coming year ahead. Hopefully an accessible van, more respite, more independence for Layla, daycare..

Party at the park tomorrow for the big 0-2. Family and friends will gather to celebrate this sweet little girl's life. 

"Today you are you, that is truer than true. There is no one alive who is you-er than you."

She's here!

Last Friday I received a phone call from Red Cross saying that a power wheelchair was ready to be delivered to my house on Tuesday! Fantastic news. Finally, Layla can get on the move. Aaron and I discussed how we didn't have a ramp but assumed that Red Cross would come equipped with one for delivery at least. And besides, there should be a few hands to help because I'm sure OT and Physio will need to be here as well. 
Boy, I was wrong, and felt very ill prepared. Yesterday comes around and I am the only one home because it's midday. This scrawny young guy hops out of the delivery van, alone. He asked me if anyone else was here, or coming to help. I guess not. He took one look at the stairs and said he would have to leave it in the driveway. Not ideal. I thought I guess I'll be hanging out on the porch all day keeping an eye on it. In the back of the van was a ramp to get it out onto the ground and so I asked if we could attempt to use that ramp on our side stairs to at least get the chair onto the back patio, and out of plain sight. After having to read through the manual how to turn it fully on and get it moving we made it out of the van and eventually up the back stairs. In hindsight I should've asked if he could get it fully into the house because it was only one small step away from getting into the house. But off he went. Leaving me with a 250+ pound wheelchair. Aaron and I were able to get it up the final step and into the living room when he got home from work.  
Unfortunately it doesn't come with a seat, so I assume that we will have to get our wonderful engineer over to make another custom creation to have Layla be safe and comfortable in her new chair. We're sort of in the dark because it seems physio and OT are both on vacation this week. Which explains why they didn't come to help make sure it arrived safe and soundly.  
I am incredibly excited to get miss Layla moving. But slightly overwhelmed at the fact we still need the seat, and ramps to get it outside and then a wheelchair van if we want to go anywhere outside the house and off our street. 
I know it will all come together eventually. And I'm so so SO thankful that this has been given to us (long term loaned). Looking around the living room at all the specialized equipment, thinking about the thousands of dollars we would've had to pay, if our healthcare wasn't so great. 
Now, I just can't wait to watch this girl get going. To develop further. No doubt in my mind that she will learn how to get moving in this thing. Many smiles and tears of joy to come.  

Here she is, with that one final step to go!

Good.

"Only months ago Layla didn't really do anything, look at her now." Words Layla's paediatrician said at yesterday's appointment. Kind of a funny statement but completely true. She was so thrilled to see and hear about Layla's personality shining through as she ages. It is truly amazing to watch this girl change. As I type this on my bed, I have Mumford and Sons playing in the background while Layla is singing (either that or just yelling) and kicking off my legs. Something I could only imagine before. 
I interviewed a lovely woman this week who is interested in giving us some respite regularly. She and I had met at water therapy a few months ago. At the time she was working with two twin girls 32 hours a week who were quite similar to Layla. Her hours have dwindled down with them because the parents are both at home for a while. After we met at the pool she said she was kicking herself that she didn't get our contact info. She then spent the next couple months keeping her eye on craigslist for an ad that sounded like us. The feeling that someone would actually search out to look after my daughter? Incredible. I had no idea we could make that sort of impact. Even this woman said to me, this doesn't seem like the same girl I saw a couple months ago.. She is so active.
On top of that some of my wonderful family and friends have generously come together to give funds to help with respite while we are waiting on the grants and government funding. Truly incredible. It is so heart warming to be on the receiving end. Of course, it is hard to except the help. But I do know (though I have to be reminded) how important it is.
So lots of positivity going on around here. Feeling the love.
I'm going to stop writing at that note. Focus on the GOOD.

Respite: Day 1

Today marks a new beginning. Today I had my first two sessions of respite. One hour this morning and now one this afternoon. A truly sweet nurse showed up at my door excited to have some time with a baby in comparison to the usual elderly care that she does. Once I gave her the rundown of medications, the feeding pump and the ways of keeping Layla pleased I felt comfortable giving them some space and moved into the front room. Listening in I could hear songs being sung and little noises of enjoyment from Layla. And I thought I can get used to this.
With a deep breath in and out I felt a wave of peace. A small weight off my shoulders. She is in good hands. I intended on going out of the house to a coffee shop around the corner for a true break, out on my own. But after an incident with the feeding pump going off and the nurse not knowing how to fix it, I decided that she, nor I, am quite ready for that. Hopefully by next week we can get there. Baby steps, right?
This is only the beginning.

Help is on the way!

I absolutely love all my nieces and nephews to pieces. They are the cutest, funnest, funniest little humans. I had the privilege to spent the last 4 days with all of them from my side of the family in one place.

I have a child who is unable to do anything for herself. Which leads to a lot of sitting on the couch, or rocking, standing by the couch. If you know me, you know that I am a high energy person, so it can be very difficult to for me to sit still. Two qualities, I always thought would make a good parent. With the 2 years of very lacked sleep, I'm getting better at this. When given the opportunity to be with other typical children who give so much back it's fills my heart, while breaking it. I spent the weekend chasing them around the trampoline, reading Dr. Seuss, climbing into the tree house/pirate ship to take off to the next destination, flipping rocks on the beach to watch all the crabs scurry away to another safe spot. Hearing their giggles and screams with the biggest grin on their face is all the payment I need. Though I can't help but yearn to do these things with my own daughter. I love her so incredibly much and I hate that her body and mind are failing her. I hate that she sits on the sideline while they kids all play together. 

Why do we not know what she has? What if there's something we can do to give her more abilities? Why us? Why anyone? This isn't fair. 

I don't know if I will ever be fully happy and excepting of her condition. It sucks to be that parent, and for her to be that kid. That doesn't mean at all that I don't love her. She is incredible and I will always find the best in her. But it is absolutely nothing like I imagined parenthood would be. Nothing like any person imagines it would be. We know special babies are born all the time, into some great, and some horrible families, but I have yet to meet a person who thinks it going to be them unless they already have a special child. I was that person. And now, believe me, I've had the thought many times "I didn't sign up for this." 

Things have gotten a lot easier in some senses, especially with Layla's irritability. And as we continue with doctors and therapies I believe it will only get easier. Once we are set up with respite, preschool and Layla is given a bit of her own life, away from me, I think we will set in to a fantastic routine with a healthy amount of separation. You see, there was a long time when we didn't think Layla would make it until two, so I felt my place was to be with her 24/7 to soak up every moment we had. Now, I'm not sure how long we will have her but in order to make it sustainable, she needs a life outside of me.  

The fantastic news is that we have been given a small amount of nursing support for the next 9 weeks to get us through until the government respite kicks in, in the fall. This week we will have a little home assessment so they can decide who would be a good fit to come in. I'm still deciding which is the best way to use my 4 hours a week. Working out, sleeping, laundry, showering.. All super important things to bring back some sanity in my life. Help is on the way. Finally. 

Take Charge

As a kid, I was always a dreamer. My mom shares often of when she asked me what I wanted to do when I grew up and I said "Leave the country." I always wanted to travel, try new things, see what life was like in different parts of the world. I lived up to that for a while. After I completed grade 10 I decided that I wanted to finish school as fast as possible to make that dream a reality. So I signed up for online schooling, completing grade 11 and 12 within just over a year, while working a big chunk of that full time as a receptionist. Just after my 17th birthday I took off to the UK to become a nanny. Unfortunately, I didn't get to experience what I was hoping in that position. I won't go into too many details but in hindsight it seems like a movie scenario; the family didn't value me, nor allow me to communicate with my own family. Multiple shady situations lead me to sneak away when they weren't home and take multiple trains across the country. Thankfully my brother happened to be dating a wonderful english girl at the time who's family took me in for a while without even knowing me. At their home I remember having a skype conversation with my mom where she brought up my dreams of traveling the globe. She was worried that one bad experience would take that away from me. So when given the opportunity to travel some more in Europe, rather than coming home straight away, I took it! A month later when I did end up coming home to Canada, it was on a much more positive note, than it could've been. Here I am, many trips later and so thankful that I have been able to make traveling a priority. I've worked 6 years in the travel industry including 3 different airlines and a travel agency.
Recently, I've been hit with the thought that this isn't going to be something I can pass down to my daughter. Her traveling is going to have to be a lot more local. After two years of age children are required to sit in their own seat on airplanes. With Layla's poor neck control she will not be able to sit unassisted. The thought of traveling with all her equipment and feeding supplies, not to mention if we had any medical complications abroad is enough to keep her home.
For me, it means that my traveling will be limited to week long trips without Layla. Which could be ideal, for my current needs. I can get a lot more exploring done without a child. And a lot more rest to feel ready to deal with home life. For others, it might not be that high on their list but for myself I've made it a priority, a priority that keeps me sane.

"Go confidently in the direction of your dreams. Live the life you've always imagined."

"You can't keep doing the same thing and expect different results."

"You are the only person in charge of your future."

These are the type of quotes we have all heard many times. And I believed them for a long time. When someone would tell me of their unhappiness in their life, job, spouse etc.. I would always think to myself, then change it. If you're that unhappy, why are you still putting yourself in that situation? You have the power to move away, change jobs, do something that really makes you happy. That was until Layla came along. Very quickly, I realized that I've been placed in a situation where there are a lot of things I cannot change. I know that it would be impossible to raise Layla on my own without Aaron, so I need him. On the days when I feel like I can't do this whole parenting-a-special-needs-child thing I'm reminded that the only way out is to give her up, and I just can't do that. In order to stick it out there will be other areas in my life that will suffer because of it. That is just the truth. If we had a lot of disposable income, I would 100% hire someone to help me with Layla, through some days and nights. Thankfully some amazing people have been more recently brought into our lives to help us get respite in place to ensure that we can sustain and enjoy the life we lead.
Aaron and I have been talking a lot lately about our dreams for our future. Short and long term. There are many things that we are unable to change. But there certainly are some that we can. We need to bring these up more often and note any little things that we can do to work towards making them happen. Growing up, my dream was to live somewhere foreign on a beach. That will not happen, as far as I can see. Buuuttt could it be possible to live on the ocean, or a lake in Canada? Why not? Not anytime soon but it can happen. I believe dreams are placed inside of us for a reason. If you don't have dreams and aspirations what are you living for? As I go through a season of being tied to my home, I remind myself that this isn't forever. There will come a day when I can make myself more of a priority. My goals of having a successful career and living life abroad are not realistic at this point... key words being at this point. I always said "If you don't make something a priority, you won't ever do it." So I am making it a priority to not give up fully on my dreams and to look at ways of adapting them into a more realistic goal. This series of unfortunate events, can't go on forever.

Prior to awful diagnosis' and hospital stays and a feeding tube and special seating Layla had the opportunity to spend time at my favourite place.. the Caribbean beach. 

FINALLY

NIH application and all medical records have been sent in. In 4-6 weeks we will find out if we get to go on a little journey to Washington D.C. It's oh so exciting to think there could be a chance of finding more ways to understand Layla, help make her the happiest we can and have some understanding to what her future may bring. This brings a lot of nervousness as well, as to what we may find out. Plus a fear that even if we do go, they might not find an answer. I will have a lot less hope that we will ever find a diagnosis, if these specialists don't. That's a bit of a hard pill to swallow. To continue in so much unknown. I don't want to think of that though. I am not near ready to give up.
The application for the first one time grant to go towards respite is complete. The infant development consultant called me yesterday to read what she wrote for her letter and she is so confident we will get some funds. We have our own letter plus three more from professionals recommending this as a necessity. They can't deny us, right? Moments after we finished our conversation the social worker called. She said she had been working hard to look at different options for respite until the government funding would kick in, when she found out a family in the area who receives it is moving out of the country in September and she is giving us their funds. PTL! There is light at the end of the tunnel. Plus on top of that, she has referred us to this program that will send over nursing support for a small four hours-ish a week to get us through the summer. She said she kept thinking of how I mentioned as a used-to-be-very-active person and it's hard to spend a lot of my days sitting like a lump of lard on a couch.. (well maybe not in those exact words..) and thought this could be a perfect opportunity for me to go for a run or take a workout class a couple days a week. Such a good way to break up my day, get that needed break from Layla to recharge and be ready to give her my all. I felt the tears fill my eyes. Something so small means so much. The idea of doing something for my personal and spiritual self needs to be more of a top priority. The stress and anxiety has been building up for far too long and it's now showing more physically, through more migraines, back and neck pain, and skin issue (this is a new one for me). Thankfully I'm still at a place where I can pull myself out of most funks but I recognize there needs to be a change. 

Vulnerable

After posting my blog link for the first time publicly on Facebook. All the sudden I feel nervous to write. I feel like so many people are seeing my real life and real thoughts for the first time. Before, my readers consisted of my mom and sister in law. People who I was already more honest and open with. The blog was really just about me venting, not about wanting the masses to see it.
It's a scary thing to be vulnerable. To share some of those deep dark thoughts with the world. In some sense it's easier to type those feelings rather than say them aloud. There was something that kept me from sharing for the past year. Perhaps because I had so much uncertainty in my own thoughts, I wasn't ready for others to put in their opinions before I had my own. There were the voices telling me, people wouldn't want to know, or that they would simply think I was lying. A lot of it could sound unbelievable or like I'm trying to make it sound worse than it is. Though, I honestly try to keep a good balance of positives and negatives in my writing. I don't want, and never wanted it to be all dark because there truly are some wonderful things that happen. There always is, if you look for them. But I needed a place to let out the negative stuff too. Just using my husband wasn't enough.
Motherhood normally brings such a sense of community. When moms get together it's basically story time. They share of the tantrums, the laughter, the hugs, the new words, the first steps, oh so many firsts. All the things I longed for when I wanted to become a mom. Sadly, in my world I don't have that. Thus haven't found that type of community. Sure, I can relate on just being a mom. But not on too much else. And other moms can't connect with me because of our unique situation. Some people are scared to. I see it. Kids are always the ones who ask questions about Layla. The parents are the ones to sush them, say nothing and awkwardly change the subject or walk away. Oh how much worse that is than saying the wrong thing. The more involved we get with Canuck Place and the development centre I know we will find more of that connection. And who knows, perhaps through this blog I will make connections that otherwise wouldn't be possible.
After making my blog public, I was so surprised at the responses. Multiple private messages and texts thanking me for sharing and encouraging me in my writing. It's amazing how freeing I felt. No need to hide the truth. Different is beautiful and interesting. If I didn't have Layla I fell like I would be curious about a mom going through what I am. Maybe now people will be less awkward about asking questions because with so much information available they will alerady get an idea of what my girl is like and see that I am ready to be open. 
The last couple weeks have been very positive. Things are starting to go our way. Doors are opening. Other people are starting to fight for Layla. Not just me. I have felt for so long the pressures of being a mother, an advocate, a caretaker, a nurse.. all alone. Yes, Aaron is super involved and helpful. But there is a whole different level for me being 24/7 with Layla.. and I just happen to be better at research for programs, doctors, fundings etc. 
I got a call from physio that she think there is a child's power wheelchair at red cross in Vancouver. She is emailing, calling and trying her hardest to get that chair. Fingers crossed we can get our hands on it as a loaner. Then we would just get the engineer to come out and customize. It would be pretty easy to get that funding because of it being from red cross (I hope). But then of course if we get the chair will be need a ramp for our house and eventually a wheelchair van. Aaron can put together a makeshift ramp for the first bit I'm sure. And the van we will likely apply to different programs and variety clubs. Besides at the beginning it's not going to be too important to transport the chair around. She will start by wrecking all the walls in our house and the basketball court down the street.  
We are currently putting together an application for a one time grant that would go specifically towards respite. Yesterday, the infant development coordinator from the development centre came with us to Layla's every three week check up with her pediatrician. It was so amazing to watch her pick the doctors brain on where we might be able to access funding for respite, and talk so positively about us and Layla. She is truly an amazing advocate for us and I'm so thankful that we will stay connected with her as we continue to live in BC. That doctor is coming up with a letter to put in with our applications and I do believe we will get some funds. Hopefully enough to get us through until the government respite kicks in. 
By tomorrow our application should be complete for the undiagnosed disease program. Then we will have to wait 6-8 weeks to find out if Layla is accepted.. And I pray we do. If there is any hope for a diagnosis or possibly any sort of treatment, it's there. We've been watching youtube videos about the program the last few days. I will post a link of a ted talk from the doctor who heads up this program for anyone that may be interested. 

More deep breaths and positive thoughts are coming out of me than I've had in a long time and it feels good. Fighting through the fog to get to that sunshine. 

https://www.youtube.com/watch?v=aMMBmc_pQVA

This is the happy face of a girl who slept for 6 hours straight! Nevermind that it was 4am when she woke up. 

One year ago today

Where to begin. We had been surviving on next to no sleep. Layla's whole life thus far (9 months) she had only slept for an hour or so at a time through the night. Then in the day she would only ever cat nap in someones arms. She would cry so much of the day and night that it really got into my head. I would do anything just to keep her content. The only ways were to stand and rock her, breastfeed her and sometimes go on walks.. at a brisk pace and on a bumpy road. All were physical activities for me. There was no rest. For any of us. Aaron was doing a fast track program which left him with many hours of homework, while trying to help with Layla. I honestly don't know how he did so well in school with such lack of time and sleep. Though in my eye, at least he got a break from the craziness that was our home life. It's insane for me to look back and think so many things were normal parenthood for too long. You know when they say mothers should trust their instincts this what one of those scenarios. And I wish I trusted my instincts sooner.
Exactly one year ago today was our whits end. Layla had gotten progressively worse. Which we were told would happen for kids with SMA. We'd been able to (somewhat) deal with the crying, lack of sleep etc. but the one thing that scared the living daylights out of me was her breathing. As she became weaker, it became harder for her to breath. Her whole chest would concave, you could see her neck straining and a high pitch wheezing sound would come out as she tried to breath. Her doctor said because of her hypotonia (low muscle tone) she didn't have the muscle strength to open her airway wide, which made those dreadful scary sounds.
Aaron came home from doing five-twelve hour shifts in a row at his work placement for his schooling and I was standing there in the kitchen, crying and rocking Layla who was also crying. This was nothing out of the norm. I said "I can't do this anymore." (Which I'm sure I said multiple times but this time was different.) Aaron said without question "We're going to the hospital." We took a few minutes to pack up some clothes for us all, because I had a feeling that we would at least stay a few days. While on the road we called two people in our lives who work/worked in the medical field to ask their opinions on going to the local hospital where Layla's pediatrician would meet us or to keep on driving to get to the children's hospital. In the end we decided to drive to London Children's because we figured we would get likely sent there from the local one anyways. They are just more set up to deal with kids. As we drove, she fell asleep. Then I started doubting why we were going. I asked Aaron "What if they send us home, and think i'm just an over paranoid mom?" or worse "What if they can't help her?" I had this deep, dark pit in my stomach that was making me think we wouldn't get to come home with her again.

We were so fortunate to have a great friend attending med school at the time. He met us at the hospital and even parked our car in the staff lot to save us some money. He came in and stayed with us until the wee hours of the morning. He kept us calm and distracted us. He brought us food. He gave us ideas of what was going on in the background while we waited. I am so thankful for him in that time and especially the days to come.
I wrote once before about the nurse who admitted Layla and asked me to sit her on the scale. We had a funny little spat in triage.
"Please sit her on the scale."
"She can't."
"Why?"
"She doesn't know how to sit."
"But why?"
"I don't know.. that's why we're here!... The doctor thinks she has SMA."
"Okay, then lay her on the scale."
It was actually awful. It was one of those moments that I had a realization that there was something different about my child. (I have had a lot of these moments along the way). The number on the scale was wrong. It had to be. It was so much lower than what she weighed in at only a couple weeks before at her doctors office. I thought the nurse did it wrong.. but it was right. Layla had lost a lot of weight and fast. It made no sense to me because I was feeding her so often. We were admitted fast but just sent through to a private room where we waited longer. I put Layla out on the bed and she started to smile at the crinkle paper under her. "Sweet, now you smile. I haven't seen that smile in weeks and you choose now to smile!?"
Waiting for the doctor I decided to attempt to feed Layla. What I didn't know was that would be the last time I would breastfeed her. We say getting the gtube put in is the best thing (in hindsight) we could've done for her, and it was, but I never got that moment to kind of prepare myself for it to be done. Not that it was a great experience anyways. She fed every hour or so, never latched well, and it was always very wet and messy because she wasn't strong enough to swallow all the milk down. I pumped in the hospital for 3 weeks, giving it to Layla by an NG tube (through her nose) and then decided it was the end of the road for me, or rather for my boobs, right around the time we decided on going forward with the gtube surgery. That's a whole other story. Stopping pumping actually lifted a small weight off my shoulders. One less thing to worry about in all of this. In the stress of everything I wasn't producing enough milk for her daily intake anyways.
They decided right away that Layla was very dehydrated and needed fluids. Easier said than done. It's hard to get veins from low tone children. It's next to impossible to get a vein from a child who is very low tone and super dehydrated. They tried each arm and leg before asking if they could attempt in her head. They could see one through her pale head that they were sure they could get. We agreed. She needed fluids. They shaved a spot and gave us a little baggy from her first haircut.. is that even in the realm of thought when one thinks of their child's first haircut?
Quite quickly we were admitted to the pediatric critical care unit (PCCU). By quite quickly I mean by 5am after arriving at the ER at 10pm. They sent us to go lay down for a bit while they got the IV, NG, oxygen and sats tubes and monitors all set up. We lasted about an hour before coming back. One of the nurses overheard me and Aaron making fun of how I was uncertain the day before that we should've come to emerge. He said "If you end up in here, you really were supposed to come to the hospital." On the regular pediatric floor the nurses to patient ratio is 1:4 sometimes 1:6. In the PCCU the nurses to patient ratio is 1:1 sometimes 1:2. And they are set up right beside the patients 24 hours a day.
Prior to this hospital stay we had been waiting for June 4th to come around when we would meet a neurologist. He was going to confirm Layla's stage with SMA, be our foot in the door to the children's hospital and advise us on where to go from there. We obviously didn't make it to that day. But on our first full day in the hospital we met him at Layla's bedside. He first told us "Do not tell any other people that this is how you get to see me sooner than their appointments." Thank God for some humour. When we told him Layla's story he asked if blood work had actually confirmed SMA. We told him no. But our pediatrician said he was 90% sure that she had type 1 SMA. He understood why that diagnosis was thought of but was appalled that someone would give a life limiting diagnosis like that without having proof. And right there, right off the bat said "Looking at Layla, hearing her story, I do not think she has SMA. I can't guarantee any much better outcome but we're going to try to find out what she does have."
There you have it. Day 1 of 30 in London. Our first encounter with 1 of 13 amazing specialists. It seems like yesterday. Even though we didn't come out with a diagnosis. We came out so much more knowledgable about our daughter. She came out healthier. And here we are one year later.. she's still undiagnosed. Still working with amazing, but different specialists, in a new (but old) province. And most importantly, Layla is still here.

The Whitehouse

Met with Layla's specialist in Vancouver yesterday. She is new to BC children's from Washington DC. She is another one of those scientists who I love watching. As she studies Layla I can see the wheels turning in her head. She often takes breaks after I've answered a question to just be in her thoughts. I've found that these doctors tend to not be as good with the social aspect of their job but I have no less respect for them.. possibly more. I wish I was that smart. 
For the first time she told me of the undiagnosed disease program at the National Institute of Health (NIH) in Washington. This is where she used to work. She is going to refer and help us apply to have Layla accepted into the program. If accepted we will be invited to come stay at the NIH for about a week where they basically would just go hard in looking for a diagnosis. Instead of continuing slowly as appointments come available and we book them. For example, Layla's currently on the waitlist to get another MRI to see where her brain development is at. This is something that is super important for us to see how far she has come from a year ago when we were in the children's hospital in London. However, the waitlist is up to a year long, sadly. At the NIH, they would look at everything that has already been tested, of course, but likely retest some of these. They would do bloodwork, an MRI, EEG, EMGs.. anything they see fit, that might help with the diagnosis.. and we'd get the answers from these tests right away! No guarantees of diagnosis but it's got to be fairly high.. right? I mean, these are top of the line specialists with top of the line equipment.  
I'm so excited. We could finally get the answers we've been looking for, for so long. An idea of the future. An idea of how to best help my baby girl. So often I feel so helpless with her. She can't tell or point to where her pain is. And sometimes it's just neurological where there really is nothing I can do.. and that is so incredibly hard as a mom. All you want to do is take the pain away. If we can get more of an idea of what's going on in her brain, body, chemistry etc. I just feel like we'll only get positive results. Of course there is the chance we will get a very negative diagnosis... but we've been there. We've processed SMA, and in this medically fragile, unknown world we have to constantly process the thought of Layla possibly not being with us long. Or with us a long time while being 100% dependant on us. The uncertainty is worse than any diagnosis they might give. 

Literally moving forward

I wrote last time about the phone call from our physio therapist inviting Layla to Power Mobility Day. Both Aaron and I thought there was no way Layla would be able to move a power chair on her own. At the weekly physio appointments I continued to discuss what it would be like. My hopes weren't high for anything exciting. The only thing that started to intrigue me was this really old sensory toy we were loaned. It has a string with a wooden ball at the end. When you pull it there is a fan that starts blowing at you (cause and effect). Again, this was a toy that I didn't believe we would use very often, if at all. But once I wrapped Layla's hands around the string I quickly saw she was able to pull on it to get the fan going. This sprung a big smile as the wind blew on her face. Then she would release a bit, and do it again! Pretty amazing. Not after long her hand would slip off but we would still cheer her on as she's completed a little milestone. 

Fast forward to this past week. To my surprise we got to experience the most incredible thing with her development so far. Layla moving herself, on her own. Well with the help of the cutest power wheelchairs you've ever seen. The first chair we were able to fit in her custom seat from her stroller so she was completely comfortable and supported. We placed her hand on the joystick and pushed it forward so she could get the idea. Almost right away she was able to pull it to the side and start moving, ON HER OWN. *Que the waterworks* She started by mostly doing circles. Then there were quite a few jerks but changes in direction and speed. To me that shows it wasn't just by chance. We didn't just help her start going and then the weight of her hand just sat there, continuing to move her in that direction. No, she was working hard. You could see it in her face and jaw. (She often clenches her jaw when she is trying hard.) She got a chance to try three different chairs. 
Everyone was in awe. I don't think anyone in the room thought Layla would be able to do what she did. It was little but oh so big. Now we feel like we have to get one. She needs this! Unfortunately these wonderful contraptions are only available in the UK and are unable to even be shipped to Canada. Boo. But either way this is such a positive thing to know that she is capable! It makes me realize how important it is for Layla to have the opportunity to have some independence to help with her development. There are very few things she can be independent in but a power wheelchair could be one of them.
I don't really know where to go from here but I'm starting the research. Is the government able to fund some or all of a power wheelchair for Layla? What are the options in the area? Can we possibly find a used chair? Should we fundraise ourselves? Many questions to be answered. One thing is forsure, Layla is going places. Literally.

 

Moving Forward

I received a phone call from Layla's physio therapist the other day. She asked if I'd be interested in taking Layla to power mobility day at the development centre. They are showing off a few different children's power mobility chairs for potential kids. At first I questioned if she had called the right parent. How could my low toned, underdeveloped daughter be able to move herself in one of those? I couldn't imagine it. But she assured me that from what she is seeing in Layla, that she would be a perfect candidate. She has been showing the beginning signs of enjoying cause and effect. For example; we have a small piano that has four large keys to play notes. When I pick up Layla's hands to press a key and the noise is made, she smiles.  She is doing something, then seeing a result and enjoying it. This is slow but good progress. The therapist said we likely won't see it right away but believes that over time Layla would hopefully realize that her hands can push the joystick and move herself towards where she wants to go. The occupational therapist that is putting this event on is doing a research project on having children in wheelchairs as young as one year olds to monitor their development. It's amazing, really. That people would believe, put so much time, energy and money into helping these children. That someone would believe in my sweet girl. It feels good to know that others have so much faith in her even when I struggle. She is not meant to just exist in society but to thrive.
This got me thinking about the years in the past when special needs children were separated from their families and community when placed in institutions for their whole lives. It breaks my heart. Not too many years ago there wouldn't have been so much put in to a child like my own. We are so fortunate to live in a country that values each and every life. I am so fortunately to have amazing men and women doctors and therapists that value my daughter so much and want to see her succeed.
I often forget really how far we have come. I'm so thankful for the photos and videos I took of Layla to compare with how much stronger she is now. We no longer are daily scared for her life. That's the biggest joy. We get to actually discus with people the excitement of her (at least) short term future. I'm setting goals for her mentally, physically and visually. It's so exciting, and yet scary. If I've learned anything over Layla's life it's that nothing is set in stone. There are no guarantees in this life. That can be both in a positive and negative sense. Currently we are seeing it in a positive light. Who's to say that my sweet girl won't hold up her neck, or be able to say some words one day? These are starting to feel like more real possibilities. When only months ago doctors said she wouldn't develop any further. I have no idea what things will look like in years to come but in the next six months I'm predicting falling more in love and being more amazed by the gorgeous Layla.

Turning a New Leaf

I didn't want to speak to soon but Layla has been SO incredible the last two weeks and I think it may be here to stay.. knock on wood. We are sort of stumped as to what brought on the change. After spending a week away from Layla I noticed that her eyes were more alert and open. Thinking that it was just because she was excited to see us, I just enjoyed the day. But here we are almost three weeks later and she is still so alert. Our friends our noticing and doctors have noticed, without our prompting. (So I'm not being an over excited mom.) While at Canuck Place the doctor and nurses noticed symptoms of reflux so they tested Layla's PH levels only to discover she was having a lot more reflux than we realized. Her dose had to be upped times three. After a few days with this change Layla slept for seven hours straight! We tried not to be too excited because this must've been a one time thing... right? Prior to this Layla was learning to stay awake through her sedative and we were mostly getting two hour chunks of rest with no more than ten minute naps in the day. It had been insanely exhausting though we were somewhat used to the lack of sleep... well we had no choice in the matter. Then an amazing thing happened.. she's continued to get five to seven hours of sleep at night almost every night since! There are no words. The med change, the sleep, the new seating equipment and the alertness in the day are all playing roles in this new girl. 
We started physio when Layla was six months old. I grew to find it pointless because it wasn't making any improvement. It only made her more upset.. and when you have a baby that cries a majority of the day and night you want to do whatever you can to keep her happy. So I rarely did it when we weren't at an appointment. We started back up when we moved back to BC in September but have only gotten more serious about it in the last month. The most change has been in the last month. She has honestly gotten much stronger. She is so proud of her own movement, thinking it's quite funny when she kicks off the edge of the couch cushion, or pushes up her pelvis while laying across my lap.
When I think of all these things, all the changes over the last short while I am reminded of the classic saying Hard Work Pays Off. Sometimes you may be only holding on by a tiny thread but do not let go, stay afloat. If you told me a year ago that Layla would be able to do the things she is doing now I wouldn't have believed it. We weren't seeing any improvements at all, no matter what we tried. In fact it had gotten much worse. I had accepted that as long as Layla was here on this earth, it was going to be extremely difficult. The advice we were given was to just make her comfortable. She was so upset all the time we were told to give her meds, rock her how she likes etc anything to keep her happy for the short amount of time we were to have her. To just have her survive. It's an awful concept but we agreed. While there have definitely been moments where I gave up on her, I think there were so many times that she was trying to communicate to me what she needed. She needed us to not give up. Never give up.
The fact that we are seeing these improvements is incredible. I wish we could bring her in to the London Children's hospital for them to see her now. I have finally allowed myself to feel the joy as I see her slowly develop. The love and connection is going so much deeper. But I can only let it go so far. Seeing her eye, legs and arms move is the best but I can't allow myself to think much further to save myself from heart ache. Take things as they come. Enjoy the moments. 

The Struggle is REAL

It has be a hard couple of days for me. Last Friday night I flew into the airport after a weeks vacation in Mexico. You'd think I would be so rested.. and I was, for a short period. On vacation I was reminded what it's like to be your own person. To go places without thinking ahead of time of formula and medications and sterile water. My arms felt so light without Layla in them. I got to be so active, which is very important to me but I has become so limited in my every day life. Then on Saturday we drove to Canuck Place to pick up Layla. The first two days back with her were so great. She gave extra smiles and because of my rest, I had more patience for her neediness, through the night time wakings and during the long days when Aaron's at work. By Wednesday I started to feel down. Back to reality. My reality with my daughter. Where I spend so much time stuck on the couch alone in my thoughts. By Friday I couldn't hide it from Aaron. I was noticably angry, distant but not wanting to talk about it yet. Him saying he had to work Saturday didn't help. 6 days straight. ugh! I long for the weekends because it's so much easier when he's around. Just his presence helps because I can talk with him more than anyone else about the deep, dark stuff. What would I do without him?

My enemy is the mind. I honestly have no idea how to turn it off, or even slow it down. It gets pulled and tugged in so many directions. It's a vicious, overwhelming cycle. I constantly envision another life, changes that would make it better for our family. I've spent months scouring the internet looking at schooling for myself. Something to help me feel fulfillment and purpose. I keep thinking that when one day I am able to work again how I would love to have better options than I do now with my little education. Full time wouldn't work because we don't have respite for Layla. My only option would be online but I'm pretty certain that would be quite difficult to complete with the miss'. With that option I feel like your options are limited and I am really not sure what in the world I want to take. Also we'd have to come up with the funds, which isn't ideal right now after just buying a house, especially if i'm not very certain of what I want for my career. The mental pros and cons list goes on... When it really comes down to it if I was more motivated I would do something about it. I would go to the school and talk with a career counsellor or something. But instead I exhaust myself with google searches and kick myself for not having an education before having a child. Or for not being one of those artistic moms who somehow finds the time and energy to sew and sell baby clothes online.

My other readings includes a blog about different family's stories of medically fragile children and their grief as they passed. I know it's a horrible thing to be reading in my spare time but it draws me in. It makes me feel like i'm somehow preparing myself for the day, like it will help. Because it's inevitable. How can I be so morbid? You can't go through live living for the day your child will die. Though sadly, I think about it often. On a positive note, it is also a reminder that I am not alone. There are so many families going through similar and much worse situations. Surprisingly that tidbit of information helps me stay afloat.

When Aaron and I hang out with or watch typical kids it can make us feel very isolated. No one truly understands us. We can share a story or feeling but they can't possibly know the depth and reality unless they've been through it, which they haven't. Relating is hard. Aaron shared with me how he went to his brother's church when I was away. There was an abundance of young children there. He would watch them so actively move around, crawling and pulling themselves up on the chairs. They would talk and snuggle into their parent's shoulders, then squirm to be let back down. We have never experienced these very simple and every day occasions. And what we would give to. It re-brought up his bitterness and anger with God. How every dream of parenthood has been shattered. And unfortunately I wasn't there to talk him down. He tried to contact our pastor from Ontario, but no reply. He tried to talk to our counsellor through Canuck Place but she was unavailable. Ugh. Our luck. Then he went to visit Layla and met a couple families where they had decided to try for another child after they got the hang of their medically fragile one, only to have multiple special needs children. That didn't exactly bring any hope.

When people ask me questions about Layla. I have multiple routes that conversation can go, depending on the person and my mood that day. All the lines are down pat. If I feel like they really want to know I will give just enough realistic information that they can slightly understand but still having a positive spin because that's what people want. I withhold a lot. Fake it till you make it, right? Or avoid these conversations as much as possible. We are a year and a half into this journey. I have no idea what the future holds for us and our darling daughter. I'm not sure if i'll ever be able to be completely happy with the path that has been brought before us. And I certainly won't understand why in this life. These days i'm feeling like that could be okay. Maybe even expected. You can have both joy and sadness in your daily life. Perhaps this grieving doesn't go away. Perhaps it's okay to come and go in waves. Key word is waves.. do not let it consume you. I fear that I will.    

You don't realize that some of the best things in your life are going to come from the hardest.

Quoted from this video. Such a good watch.  It's a family of 6 that has two sons with fragile X syndrome. Quite different from our journey but their perspective was interesting from more of a hindsight.

https://vimeo.com/105766185

Making Sense

Because of the most recent move Layla has been assigned a new physiotherapist. Today was our first encounter. I was not excited about starting with someone new, yet again, but she is so great. With many years of experience, she seems very knowledgeable and came with a hands on approach. She was able to pinpoint so many things with Layla. Even moments after meeting her. One thing that stood out in our conversations was on vision. I mentioned to her how not long ago I was looking at old videos of Layla from 0-6 months and the first thing I noticed was how wide eyed she looked. Her eyes were big, open and looking around in wonder. I honestly had forgotten that she ever did this. My memory had been focused on other things, I suppose. All I can remember is how everyone always thought she was sleeping (and still does) because she looks down so often, only out of a small slit. I know for sure I didn't notice the nystagmus (eye shaking) until we were almost ready to go home from the long hospital stay. So I feel like something may have actually caused this to develop.  
The therapist was not surprised by my discoveries. She explained that Layla has closed off and gone inside herself to just survive because she had to. Apparently it's quite normal for children that have gone through the sort of trauma Layla has to react in similar ways. Having so many doctors and nurses coming at her, poking and prodding constantly forced Layla to learn to shut down because she lost control of herself. Not getting proper nutrition for a pretty decent period prior didn't help either. Then it became her new normal. Once it became normal, and with her low tone it became hard to even just open her heavy lids.
No one has ever presented that thought to me. But it totally makes sense. Now the hope is with working alongside the physiotherapist and the vision consultant we will be able to get her more excited about keeping them open. Make her new normal keeping them open again. I'm sure it'll be a long road and no easy feat but the fact that it's a possibility makes me very happy.

Being Proud

Last week I read a post by a mother who her lost her son at only a couple weeks old from a genetic disease. She wrote of his first few days when she mourned the loss of what she thought parenthood would be. The thoughts of Why is this happening to me? How sad I would be to have a son with disabilities. How sad I was that my son would die early. She realized how selfish many of her thoughts really were.
It got me thinking. Have I been selfish in my thoughts? Was I a bit embarrassed of Layla? I realized how almost all pictures posted publicly of Layla have just been of her close up beautiful smile. (She does have a beautiful smile.) But I'm not posting real life pictures. I never posted of her month long hospital stay last year. The days in the critical care unit where she was covered in all sorts of tubes. The surgery, the recovery and the countless tests. We have been back to the hospital many times since for emergencies and diagnosis testing. I haven't posted of her hospice stays, therapy appointments or pictures of her g-tube and medications, even though these are a big portion of her day. Don't get me wrong, I think there is a line with how much is shared for the whole world to see. And I do believe having a positive mind helps us get through tough situations. But it's sad that we often only see perfect pictures of people and their families which leads to a false comparison. We wonder why we aren't happy with our lives when we are constantly comparing with the couple who travels the world and seems so in love, or the mom who's hair and makeup is always done while raising 4 beautiful children, or the single friend who has an amazing job and seems to be living the life.. We don't see reality with these people. We don't see the sadness, brokenness or hurt that they carry. I, myself am often guilty of only putting up the best. I've tried to portray Layla as a typical child but the truth is she is not a typical child. Part of me does it so people won't feel sorry or pity our family. I want to seem strong and like we have it all together. But the truth is, we are far from it. 
As these thoughts swirled around my mind I put myself in Layla's shoes. Layla knows no differently than the life she has. She was born this way. She doesn't understand that it's not normal to eat solely by a tube. She doesn't understand what she should be doing at 18 months old. What about how her condition is effecting her life? She has a life, meaning and a purpose, just like we all do. I'm reminded of this quote I saw somewhere in the cyber world:

 Layla has more purpose than just fulfilling your motherhood.

Deep eh? I've been repeating when I start to feel sorry for myself. Because we tried for quite a while, and Aaron had to have surgery to just get pregnant, my mind switched to where I so badly just wanted to be a mom. I had so much time to envision what it was going to be like. My expectations were high. And then they were very disappointed. Life never goes exactly as planned and in our lives it's been far from it. Layla might not be who I expected her to be but she is my daughter. My flesh and blood. My job is not to just be her caretaker. It's to be her biggest advocate, her cheerleader and her mother. I want to encourage and help her reach her highest potential. That's why we continue the testing and fighting for funding and equipment. To make every day count. There are many children who have similar conditions to my daughter who are unsure how long they will be on this earth, and I've seen their families honor them every month. At first I thought it was a bit excessive but you know, why not? How many moms of typical kids write posts every month of the new accomplishments their child has made? It's kind of the same thing. Just a different sort of milestone. 
So I went on facebook and posted a picture of sweet Layla in her standing frame. I actually had it edited and commented on a few times, over a few days before I had the guts to actually post it. Why was I so nervous? I was so scared of what people would think. But I clicked that mouse. I didn't write a sob story but instead a brief post of how big she's getting. You know what the responses were? Way to go Layla! Look at her, getting so big! We're cheering you on! I didn't realize that so many other people would want to encourage her with us. Maybe it's not so bad to be a little more transparent with our reality? Maybe it will even help? Aaron commented about the photo right when he got home from work that day. He has followed my lead by not posting anything that makes her look different. So we talked for hours about her and the thoughts I'd been having. It convicted him aswell. 

Here is a picture of sweet Layla in the pediatric critical care unit, the day after we went to emerge last May. We went in so scared that we might come out without her.

It's hard to even think back on. I remember checking in at the emerge and the woman asked us to sit her on the scale. When I explained how she she couldn't sit the nurse asked Why? 

We don't know why. She never has. We were told she has SMA. 

We laid her on the scale and it came up 12 pounds 8 ounces. I asked her to try again because she was at the doctors two weeks earlier and had weighed 13 lbs 14 oz. (She had been that weight for 3 months.) The nurse tried again and it was still 12 lbs 8 oz. My heart sank. That couldn't be right. There is no way this little body had lost that much weight, that fast. Then the guilt set in. I should've brought her in sooner. 

That's enough of sad reminiscing for today. She's here. She's alive. She's laying across my lap and watching me type away. 

There's that smile.