Give her an inch

The power wheelchair is finally up and running! Her custom seat is all set up for it. Wednesday the seating and mobility team showed up with our physio and OT. They said "She might not pick it up right away. But with practice hopefully she'll get the hang of the control and movement." But she moved it, pretty much right away! She did little movements across the living room. Oh my heart! It was so amazing to see. We were all so proud. Everyone had their camera's out, video taping her, cheering her on.
It gets me back to the reminder that we have no idea what's going on inside for Layla. We don't know where her mind is at, what her potential is. We have to give her more opportunities to show us just go far she can go. Give her an inch, so that she can take a mile, I say.
For now she has to ride around the living room because we don't have the ramp built yet to get it outside, nor the van to go even further. But she only needs the small space to begin with. Once my walls start getting dented.. then that's a different story.
On the medical diagnosis side-I received a phone call today from the doctor who applied for us to go to the undiagnosed disease program. She had just been in contact with them about Layla. They had expressed some concern in sending her to the National Institute of Health. First off they were worried about having someone like Layla travel on quite a long journey to Washington DC, including connecting flights. We would not want any medical issues to happen up in the air. The other worry is that the NIH does not have a pediatric ICU only an adult one who won't take children under 12kg (Layla's only 10kg).  They said if she is put under sedation, which she would be for multiple of the testing they would do, it would be too risky to have her there. That being said, they asked if we would consider going to another one of their sites, UCLA. The flight is a lot shorter and they are equipped with a pediatric ICU, Yay! I said, of course! We just want to see this happen. Doesn't matter which site. We are not ready to give up yet. So now she has to get back to them, find out their wait time, yaddy yadda..
In the meantime, they have decided to start Layla on a mitochondrial cocktail. It's basically a high dose multi-vitamin made just for Layla. Potentially, it could help with giving Layla more energy and thus more strength. We're up for anything! I just read an article about a new drug that has recently come out that can help kids tremendously who have SMA type 1. It was an incurable, life-limiting, genetic disease, prior to this drug being approved. It gives me hope that there could be something out there that can at least help Layla enjoy a longer, happier, healthier life.

Who you know.

The small amount of sleep Layla gets on a regular basis has always been a concern. She gets no where need what a child her age should be getting. We know part of the issue was/is reflux. When she started reflux medication in February, her sleep got a bit better. But it's still not great. Now Layla's therapists have been questioning Layla's breathing patterns. Wondering if lack of oxygen at night could be part of the reason she wakes frequently.
We brought up the issue with the pediatrition and she agreed to get her on the waitlist for respirology and ENT (ears, nose and throat). I called the respirology clinic to check in on our application when she told me that they hadn't received the referral. But stated that it would only be about a months wait if we got it in as soon as possible. So I got a hold of the doctor and asked her to re-send the forms. Then when I called again to check that it was received, I was now told it would be a 10 month wait! No idea how that changed so quickly but I was discouraged. Isn't breathing is a serious issue? You would think that there would be a high priority to get in right away if there is concern.
The really frustrating part for me was that we had both respirology and ENT doctors when we were in Ontario. They were supposed to put the referrals through themselves when we left there over a year ago now. I guess that never happened. And obviously we had gotten busy with other specialists and priorities that we hadn't ensured that those referrals were put through. So I guess that's sort of on us for not confirming.
The therapists suggested that we might need to take Layla into emergency at the children's hospital so that she could be seen sooner. Unfortunately that is the one way to avoid long wait times. Not ideal, but that's life. While mulling over the thought of doing that a new friend of mine who is all to familiar with the hospital and specialist world with her son got involved. She had noticed similarities between Layla's symptoms and her sons when he needing to start on the bi-pap machine while sleeping. While at BC children's last week she saw the respirologist and explained our situation and the wait time. He wrote down Layla's name and said to tell me to call and book an appointment ASAP. We got in Friday. Going from a 10 months wait to a 2 DAY wait. Isn't that insanity? How can it be? The only thing I can put it down to is that it's all about who you know.
I'm very thankful for this new friendship. She is almost 2 years ahead of us in her journey with her son and it's already been beneficial. Not only to have someone who understands the emotional side but also the practical side of life with complex children. I'm starting to realize how important it is to not feel alone through this all.
The appointment went great on Friday. The doctor heard history and what is going on now. He saw the need we have for more help and support through the children's hospital. We were sent home with a sleep apnea kit to monitor Layla's sats over the night. I'll bring it in this week to be reviewed and we will go from there. Even if she does not need to have the bi-pap machine brought home he is going to direct us to where the help is needed.
I explained how I'm currently feeling as though they have us waiting in limbo to find out if the NIH is going to take us on. But while waiting, doing nothing much in the mean time. I will be especially frustrated if we do not get accepted into the program. He agreed. He said the hard truth of that he is slightly skeptical that they will ever find a diagnosis if they haven't at this stage in the game with the amount of testing that has been done. He understands how frustrating it must be as parents to not have more answers as to what the future may hold but unfortunately it's all too common not to have answers. That being said, he said that doesn't mean she needs to be given up on. Symptom management is the number one priority. How can we help Layla live her life at her highest potential and with the most joy? That thoughts been around for a long time but is still so important.
Too often I sit back and just trust the doctors who see her for such a short period of time. But what I'm starting to understand more is that sometimes I need to fight a bit more. If I know there are issues in a certain area I can't let anyone tell me that they are not there. Fight for that second opinion. Use the connections that I do have. I am Layla's biggest advocate and there will always be new battles.

Two

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

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

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

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

She's here!

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

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

Good.

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

Respite: Day 1

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

Help is on the way!

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

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

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

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

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

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