I'm happy to hear that the biochemical diseases program at BC Children's is still wanting to work with us evening though we've been accepted to the Undiagnosed Disease Network in the states. I had been feeling a bit like we were passed off to someone else and they weren't willing to do any more until we've completed our stay there. So that is encouraging. Any progress is good progress. Whether it is eliminating or discovering.
Shortly after we were told about the mitochondrial possibility, we started Layla on a few new vitamins to see if they would help give Layla more energy. And I honestly do think they have helped. She had a set back with being sick for an extended period this winter but overall she has had more energetic periods through the day than ever before. She is so much more alert and active. She seems to be recognizing familiar songs, voices and activities.
Yesterday I picked up Layla from a four night respite stay. We took two nights to have a getaway of our own up to Okanagan. It was so relaxing. We visited a few wineries, went snowshoeing and relaxed at the resort that had a bunch of steamrooms, saunas and a gorgeous infinity pool overlooking the lake. We were in bed super early both nights, got an opportunity to work out at the gym, have peaceful, delicious breakfasts. It really was good for us. But the biggest change I noticed for me was that I actually wanted to pick up Layla early. I missed her that much. In the past, I've been so exhausted from caring for her that I longed for that time away. It was such a necessity. But this time, I really wanted to have her back. The van felt empty with out her, the house seemed weird. She is just so much more enjoyable to be around these days. I wish I could've had these feelings a lot earlier on with Layla but either way, I'm thankful for them now.
