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.