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.