Day and Night

In meeting yet another health care professional that I had to explain Layla's story to I've been put into a time of reflection. Reliving the intense moments of this last year and then comparing them to where she is now I can honestly say it's night and day. As hard as it still is in some aspects there are others that are so easy. I never thought I'd be able to say that about my daughter. Seeing the joy on Layla's face so much more often, seeing her kick and punch, seeing her physical growth, it all makes me so happy. I can actually feel the love in my heart. Does that make sense? To physically feel the infatuation... yes I chose that word because it's like those in love butterflies you get on a first date (or for me, first date in a while with my husband). She seems to melt people hearts, which melts mine. Everyone loves her. I hope that doesn't change. I hope people will always feel love for her and not pity on us.
When I was explaining to a new specialist last week regarding Layla's improvements over the last 4 months and how we believe the G-tube was the best thing we could've done for her she decided to tell me how it's really not that much of an improvement. Isn't that kind of her? First off, she didn't know her at all prior to that appointment last week to have a comparison. Of COURSE I understand that in relation to other 14 month olds she is not even close to where they're at. But for HER she has significantly improved and I am going to hold onto that. Those kind of comments really do my head in. We've said it many times and I'll say it again, there are some doctors that missed out on sensitivity training. They are good with their work but not good with people.

Frustration

After two busy days at BC Children's this week I was feeling so frustrated. First off Layla had an EEG and it did not go well. She cried through the whole process of getting all the electrodes attached to her scalp, and then fought sleep for an hour and forty five minutes.. only to find out that we could've given her a sedative when they first asked me to put her to sleep... even though I mentioned to them that the only way we get her to go to sleep at night is with a sedative! Urg! Then within 10 minutes of getting her to sleep they asked me to wake her! Those drugs are liquid gold. What a waste. On top of that the results showed nothing. They were suspecting that she was possibly having seizures but it came back clear. Which is a good thing. 

I just feel like we haven't learned anything new about Layla since we left Ontario in August. I'm listening to the Neurologist and the Biochemical Diseases specialist tell me that they want to redo the exact same tests we performed 6 months ago at London Children's. I don't know if they don't trust the doctors out there or what? The one thing that did make sense is that they mentioned that they wouldn't really get any new information doing another MRI before Layla turns two. I guess the brain just changes so much in the first two years of life that it really wouldn't be much help and would not point towards any specific diseases because it didn't before (other than underdevelopment). So alas, we wait. That was one thing I really wanted to happen soon. If I could just know, if it's getting worse, staying the same or getting better I might be able to have some sense of certainty. Something that would tell me what direction Layla is going. Then I am reminded of what one of Layla's specialists in Ontario told me multiple time. "What is more important than a diagnosis is her quality of life." I know that is true. But i'm just so determined. Perhaps too determined. This transition from different provinces has been harder than I had hoped. I so badly wanted it to be seamless and boy did I work my butt off with phone calls, mail and emails to try and make it that way but it's been far from it.
I just received an email that Biochemical Diseases wants to bring Layla in to the day unit again in December. They are going to run blood tests before and after feeds.. again. But this time she is doing a very specific metabolic test. I quote "The Dr. is trying to find a diagnosis for her.." Well I'm glad I'm not the only one!

Someone who understands

This morning I had the pleasure of hosting a wonderful Canuck place counsellor. We spent an hour and a half talking. I love that it didn't feel formal at all. It was very casual. We just chatted. I didn't have to explain the whole medical history of Layla. She obviously did her homework on our story. It was so nice not to have to spend 3/4 of our time explaining that. She wasn't here to talk medical either. Instead we talked more about the present. How we're coping, struggles, joys, sorrow... Some things I would be scared to share with others. She not only understood but made me feel like they were normal thoughts, not the sort only horrible mothers think. If I found a random counsellor online they might help me deal with some of my current struggles but this woman literally only speaks with parents of "medically fragile kids". She actually put words into my mouth I couldn't on my own. It was like she was in my head.

I spent some time talking about the ifs and buts of going back to work. One of my comments was that I don't know if I want to work in customer service anymore. I don't think I have patience for people like I used to. I used to be so good at that. She guessed that it's because going through everything we have in the last year you change and start to realize what's truly important in life.. Head on the nail. Suddenly you really don't care how important it was for someone who absolutely needed to get to Calgary for a meeting who is now  missing it because it's my fault the plane can't fly in heavy fog.. I laugh but it's so true. I'm finding it so much harder to relate to others' problems. It's terrible I know. But that's where I'm at. When you are told to discuss quality of life for your daughter, how much you want medical professionals to intervene.. your whole world changes. There are so many things we've had to talk about that I never ever wanted to talk about for my kids. Aaron and I both feel it's made us quite cynical.. at least in our thoughts. I hope we don't portray that too much.   

I am not alone.

As I type this I am sitting in a chair, watching my daughter get rocked by a loving volunteer at the Canuck Place. We're here for our initial 3 day stay. This stay is for the nurses and doctors to get to know Layla's "normal". Her likes and dislikes, her funny quirks, how she sleeps, eats, rocks etc. So that in the future we will be able to drop Layla off for multiple days of respite. Such a crazy concept for me. After being her 24 hour caregiver it's hard for me to allow others to do all the things I normally do. When she gets worked up I just want to take her and make it better. But I have to allow them to do it because in the future I won't be around to help. Part of me wants to not do this. Receiving help is hard! Asking for help is even harder. It seems like they know that around here and so they just take the initiative. 

Today I met a two and a half year old boy that has type 1 SMA. Boy it was so hard to see him. His health is not well but man does he ever seem sweet. His eyes were barely open but I know he was looking to say hi, by waving his tiny little thumb. I felt my heart break for them. I had to escape to the washroom to have a good cry. It's so heartbreaking to know he doesn't have much time left. His parents were so so sweet. They approached me about Layla, assuming she too had SMA. They said she looked so similar to what their boy did at her age. I explained how they thought she did but have now ruled it out and we're back in the unknown. But it hit me hard when they said that.. What if she is heading down the same path as him?? What if she turns for the worst. I hate all these stupid unknowns we have!! Give me some answers. In meeting other parents and children here I very quickly realized that I am not alone. I am not the only person caring for a medically dependant child. In fact there are lots of people who have it a lot worse. It's not good to compare, I know that, but sometimes it helps a bit. It's nice to compare to kids similar to Layla rather than a "typical" 14 month old. 

I know we were supposed to sleep well having two nights without Layla but have not. I woke up multiple times throughout the nights. Worried about my baby. Wondering why I can't hear her breathing. But we're on the road to getting some rest in the coming months. It will get easier. In some aspects. 

Auntie making her laugh. She's so lucky to have loving family around. 

In sickness and in health

My husband is amazing. No, he's truly amazing. After all we've been through in the last few years I can't believe how strong he's stayed through it. Especially how I've been the last while. I'm not saying every day is a walk in the park for him (far from it) but he has every right to be angry, bitter, distant etc. yet he chooses not to. I need him not to right now. It allows me to deal with my stuff. It seems as though one of us is always stronger than the other, to help pick them up. I dread to think about where we'd be if we were both letting life get the best of us at the same time.
Yesterday he got off work early to surprise take me on a date. We celebrated five years together. Started with a beautiful drive to the town we got married in, shared a milkshake at the diner, had a nice long fall walk full of conversation and finished with a meal. The weather was perfect, the setting was perfect. We shared of struggles and fears, goal and aspirations. I am so thankful of how open and honest our relationship is. There is no fear of judgement between us. That sort of raw honesty brings a lot of tears but also laughter. Amidst the depressing conversations we both try and bring in some humour. When discussing how hard it is to get out child to sleep, or calm her when she's past her limit, or how badly our backs hurt from rocking, my husband says "What other option do we have!?" We both know how difficult it is to care for Layla with two parents in the picture that it would just be downright cruel for either of us to leave the other. So I guess we're stuck together. I could think of far worse people to be stuck with. He is probably the most involved dad I've seen. He works full time, gets home only to help with our daughter, spend time with me and give me some time to complete the house/personal tasks that there is no time for in the day with a needy child. There is no down time. I wish so badly that Layla would go to sleep at 7pm so we could at least have a couple hours to ourselves nightly. Unfortunately with her sleep schedule so short we don't have that option.   Something we have made a priority this year is to give each of ourselves one thing that is our own. Aaron is coaching volleyball and I am playing on a soccer team. Especially for myself, spending all day and night with her it is so great to not have to attend to a child for a few hours a week. We talk about getting that opportunity through going back to work but with having multiple appointments weekly and having to work around my husband's scheduled I just don't know if it's a possibility. Easier said than done. It is so hard to think about fully giving up my job. I hate feeling like I wouldn't be contributing financially. I want to have a purpose, to feel I'm moving up in the world. I fear what others will think. They'll just imagine that I'm lazy, at home drinking Starbucks and going to the spa regularly.. I wish.     

Worn.

Worn. And wearing thin. That's how I feel today. I can't stop thinking about the future for Layla, the future for our family. Right now she just looks like a big baby. She looks like she's sleeping as she lays flat across my arms. She's not. She's actually a terrible sleeper. But what's going to happen in the next couple months as she get bigger and bigger, still laying flat across my arms? What will the comments switch to? What will the looks switch to?

I've been meaning to write down this conversation I had with a woman in the mall a few months ago. It's one of many just like it and I'm sure there are many more to come. We had just been released from the children's hospital and I was so eager to have opportunities to take Layla out in public after she'd been stuck in the four walls of a hospital room for so long. We walked into this home store in Ontario where I loved looking at all their chalk painted furniture. This woman walked over to see Layla laying across my arms. The woman noticed "A sleeping baby!" To which I replied "Oh no, she's actually awake. She just likes to look down a lot." "She must be pretty new hey? How old is she?" She asked. "She is 10 months old." I responded. She gave me this puzzled look and asked "Really? She must've been premature then?" With my simple response. "No." Her puzzled look changed "Hm.. Oh. Well, she looks like she's in a coma."
I stood there in shock for a moment with absolutely no idea what to say. I felt like my feet were glued to the floor and my eyes were stuck wide open. My brain was trying to process how someone could think that was an okay thing to say... Even as I reminisce I still don't know what I would say. I have to just chalk her comment up to verbal diarrhea. Or maybe it's just ignorance.

 Some days I'm strong. Some days I forget that other people's 14 month old babies are not at all like mine. As my only child, she is all that I know. Other days I am far from strong. I think about what Layla would be like if she was a typical 14 month old. To imagine her walking, talking, eating.. all those things that just seem so foreign to me. I love her with all my heart but there are days.. too often.. where I think that I'm not cut out for the job of parenting her. It's so hard. I hate that our normal is doctors, specialist, emergency rooms, physio therapists, occupational therapists, social workers.. I'm trying so hard not to get bitter against God and other people that get to have "normal" children. When we first got married we wanted to have 3 or 4 kids.. now, we don't think we'll have any more. It's sad. To imagine a child running into your arms screaming "mommy!" or playing sports with Aaron in the backyard, makes me too emotional. Why can't we have that? Or maybe the question is Why can't it be easier for us to have that? I know that we can go the route of adoption and I do believe we likely will one day. But that road is also very emotional and expensive.
I hate being a negative Nancy but my normal positivity is harder to find these days.

Beside my bed.

What lays beside my bed? Syringes, earplugs, computer charger, phone charger, baby socks, ear buds, a ziplock bag and a lighter. Seems like such a strange group of things but they all have an important place there. There's all different sizes of syringes. 3 ml for medication, 5 ml for flushes, 10 ml for laxative and 60 ml for gas. Earplugs because I'm a paranoid mother of a sick child who snores and chokes in the night and it keeps me awake (I only sleep with one though so I can hear if she really needs me). The computer and phone charger are a pretty normal thing to have by your bed.. we need our entertainment, and phone services always working right? Plus with late night and early morning feeds and middle of the night blood sugar checks I am obsessed with setting alarms on my phone. The baby sock.. I'm not sure about that.. especially the fact that there is just one. The earbuds because my daughter is such a light sleeper. A ziplock bag is what we have Layla's formula in when we're on the go and the lighter was for some eucalyptus (yes, I had to look up how to spell that) oil burning thing my sis-in-law leant us while Layla had a pretty bad cold this month. Oh how so much has change over the last few months. I notice my last post on this blog was May 28th. That was the day before everything changed.

On Friday May 29th and I had another really rough day with Layla.. cranky as ever, not eating, not peeing or pooing, not sleeping, not letting me put her down. I cried the whole day through. When Aaron got home after school I said "I can't take it anymore, Layla can't take it any more, I'm SO scared." and then he said "Lets go. We're going to the hospital." I knew that if we went to the hospital we would be staying for a while.. I just knew it. So I quickly threw a bunch of all of our clothes in a suitcase and away we went in the car. At first we thought we would go to the hospital an hour away which was where Layla's paediatrician is as well as Aaron's parents who could take Charles (Our English Bulldog). But as we were driving we made a phone call. We called our friend Jordan who happens to be in med school. He knew pretty much everything going on with her and completely understood why we wanted to bring her in. He suggested and gave us the pros and cons of driving another hour further to the children's hospital. I kept having flashbacks of going to the hospital where they had no idea how to take blood from a baby.. Layla cried and cried for hours and then they sent us home. The next time we came in she cried for another hour and I ended up passing out and ended up on a hospital bed in the hallway. That was not a fun experience for us all. I looked back at Layla in her carseat and she had fallen asleep. So the decision was made that we would drive on. We had to pit stop on the side of the highway to give our dog to Aaron's dad but then we kept on. The whole drive I was second guessing myself. "What if they just think we're over paranoid parents? What if they send us home? What if there's nothing they can do for her?" and then onto the most awful thoughts "What if this is the end?"

Thankfully it wasn't the end. We spent the first 4 days in the PCCU (Paediatric Critical Care Unit) and then the next month as an inpatient in the Children's hospital. One of the nurses in the PCCU said to me "If your child ends up here then it's a good thing you brought her in!" haha I can't believe I second guessed myself. But you have to understand that because we thought our daughter had SMA we thought that what was happening to Layla was expected. That was the most emotional month of my life.. In some ways we got a lot of rest that we hadn't had in 9 months. Layla slept in the hospital most nights with my mom in the room and we slept at the Ronald McDonald house across the street. But it wasn't true rest spending your whole day in a hospital room running millions of tests and talking with doctors. She was constantly on an IV, had blood work done on the regular, multiple scopes, skin biopsies, muscle biopsy, urine samples.. the list goes on. 

We left the hospital with some good and bad news. The good news was that they ruled out SMA! You would think that would make me jump for joy. Sadly it doesn't. Fully. Even though we were told our daughter doesn't have that terrible, awful disease now we feel even more confused. Because they told us that she likely has something with a similar outcome. But there's also a chance she could have a different disease that might give us more time with her. There's nothing concrete unfortunately. Her paperwork says she is diagnosed as "Progressive genetic neuromuscular disease NYD (Not yet determined)".   

The best thing we left the hospital with is a G-tube. Between Layla's dozen specialists and ourselves we sat down at the round table for a meeting and discussed how no one could see Layla being able to gain the weight she needed and continue to grow without the help of a feeding tube. She received that surgery on June 19th. For the hours/days/weeks post surgery I hated myself. Seeing her intubated and crying in actual pain. I thought "How could anyone put a baby through that? How could I do this to her?". But after about a month post surgery my feelings have completely changed. No she has not turned into an easy baby. BUT she has turned into an easier baby! She sleeps for longer chunks of time, she's happier for longer chunks of time and she even lets me put her down for longer chunks of time!
Specialists are still working away at finding us a diagnosis. I just want to know what we can expect for the future. Right now we have no idea. She is now 13 months old. We have just gotten to the point where people are really noticing the difference between Layla and other kids her age. Before people just assumed she was younger than she is. Now, she is too big to be considered an infant. People always think that she's sleeping because she has no neck support so she's always laying across our arms, or laying on the couch. She doesn't fit in infant things anymore either so we're starting the process of getting "Special" things.. This week she got a new bath chair and we're on the waitlist for a new carseat. And I'm sure there are much more things to come!