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. 

A Whole New World

Look at my baby girl.. STANDING! I've always tried to not even imagine her standing because it's depressing to be reminded of the fact that we have been told she will not. Having this frame gives her that capability and it sure is emotional. What I wouldn't give to have her able on her own.. She doesn't even look like the Layla I know. Doesn't she look so tall!? I wonder what she is thinking when in these new positions? What does the world look like to her now? The first few times we put her in the frame she only gave us tears but she is slowly getting used to it. If you look closely you can see that she is just a tiny bit too short for it so we've used chilli pepper coasters to give her that bit of height... whatever works right? Physio is going to try and get some ankle braces to help with support as the weight on her ankles and feet could be part of why she doesn't love it quite yet. 

 We are so fortunate to have the government fund a few assistive devices to help everyday tasks become a little bit easier and possibly help build Layla's muscle tone. For now we have the standing frame and stroller. In the next few weeks we will be getting a high/low seat for around the house as well as some sort of play mat. With these devices I should be able to do a lot more physical and visual exercises with Layla. Though she keeps falling asleep in the stroller so not sure how much learning she'll do in there.. but I can't really complain about that. When the therapists come over most of the exercises require two people. Now with freeing up my hands I will be able to do most of them on my own. Part of the goal as well is to have her be more stimulated in the day so that she might sleep more at night. I'm supposed to wheel her into the kitchen while I cook, bring her into the bathroom while I get ready in the morning etc and hopefully with the upright angle she can see a bit more than her usual laying down position. We're hoping to get her excited about having her eyes open, since it's so much work to open them wide. 

The special equipment is going to take a bit of getting used to. Aaron and I were discussing how having her in a special stroller might mean we will have people state less "Ooh she's sleeping!" I'm unsure of what the new comments might be. I assume that the stroller might speak for itself in a sense and less people will make their funny comments.
Last week one of her doctors said to Aaron and myself "What is new with Layla? What is she doing that she didn't before?" to which I replied "mm... nothing that I can think of." It's awful that I couldn't come up with anything. I expect some comments like that from random people but I was hurt that he of all people would ask that. If it was said in different wording it might not be as bad. In Layla's defence she has been sick for a majority of this winter season, which I'm sure isn't helping with any development. I am extremely thankful that Layla has been able to fight through the sicknesses so far. As her parents, it hasn't been easy taking care of her. Especially functioning on such little amount of sleep. Amazingly, her strength shows when she coughs. Her tone is is so low all the time but when she coughs or sneezes all her limbs flail and she gets out those secretions. Everyone is very happy about that! We spent one night in the hospital last week but that is it this winter. The goal is to avoid hospitals if possible to ward off catching any illnesses. Obviously that is the most common place for them. The last two nights I've gotten a little longer chunks of sleep out of this girl so fingers crossed we are on the up and up! Spring please come soon!

Another round

Spent another Friday in the Medical Day Unit at BC Childrens. Layla's biochemical Doctor applied for funding and was approved to have her participate in GeneDX genetic testing. They will be going through 25,000 genes looking for any abnormalities that may give us a diagnosis. She has already been a part of another team doing a very similar study (but in Canada vs. The States) so I have my fingers crossed that between these two groups something will be found. Something to give us an idea for our daughter's future. They required a large amount of blood again. I hate that that is what they need the most of. Blood work from hypotonic kids is so difficult to get. Because of no muscles tone, they cannot see the vein. They have to take an educated guess, put the needle in and move it around until they (hopefully) find a vein that will give them the blood they need. Might sound easier said than done but it is awful to watch. Layla has had them try for hours before, trying from both arms, both feet, both wrists and her fingers before getting the blood from her head.. Yes her head. Last time they had multiple nurses, an IV specialist and the anesthesiologist try to get the blood with no luck. Then, after all of that, they said we should just go home. I started crying. This was an emotional enough day as is.. Now they wanted to send us home saying today was basically for nothing. *sigh Coming another day will not make it any easier. It's never easy to watch your child be poked and prodded. We've come too far to give up now. We have to get some answers. This was one of the few times that Aaron took the day off work to come. Aaron spoke with the doctor and convinced her to send one more person to try. This time they sent someone from the blood clinic (imagine that) and she got it all! Now there were tears of joy, and lots of snuggles for Layla. That back story was just to give understanding to why I was so excited when this time around that woman from the blood clinic was the first one to come. And guess what, she got it all within the first two pokes. Thank goodness. Still lots of tears from my baby but at least it was for good reason.
After the blood work we prepared for a lumbar puncture. They gave her a numbing cream on her back and a sedative to help keep her calm. It didn't work. Possibly because she is so use to her sedative she takes to go to sleep at night that it is easier for her to fight through it. Or perhaps because they gave it to her just prior to doing the blood work (even though I mentioned how that didn't seem like the smartest timing to give her this medication). This was a sterile procedure so we had a private room. The nurse turned Layla on her side and created a curve in her spine by holding her head and bum close to her. Then the doctor inserted a needle into her lower spine. At first she was upset because there was a little bit of blood coming out with the cerebrospinal fluid which could have compromised the samples and meant she would need to take it out and reinsert but quickly it disappeared and turned into clear liquid drops. She collected in eight different vials about 10-20 drops.
With all the tests completed within the last year and these ones on Friday I feel like they have to find something. They have ruled out so much! The doctors have mentioned time and time again that they believe they give be able to give more answers than we have so far. For this group of tests we have to wait up to 6 months to get the results. So i'm not letting it consume my thoughts in the short term. In the short term we continue living life as we have and take things as they come.  
A couple people have asked me if getting answers will really change how we live. At first I thought not really. Since Layla's been around and especially post  the Ontario hospital stay our life has changed so much already. Right now we have a good routine going. I've got the feeding, meds and appointments down to a science and I even forget once in a while that this isn't the norm. If we got a diagnosis it would change how much effort I put into getting respite and going back to work at some point. It would change my patience level for Layla. It might change how many pictures and videos I take. It would change how often I am away from her. It would change if and when we would consider adopting another child. So yeah it will change a lot of things I suppose.. But change is my middle name, apparently. I have stopped believing that anything will come easy for us. Everything comes with perseverance and a lot of fight. We are forever changed.