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.