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.