Staycation

Tuesday afternoon we checked in to Canuck Place for some days of respite. This time Aaron and I are staying in a family suite on the top floor while Layla stays one floor down with 24 hour nursing. There are volunteers through the day who will spend time with her, doing crafts, playing music, going for walks, reading and cuddling.
I'm feeling slightly restless not being responsible for Layla at all for days on end while being so near to her. Distracting myself to recognize that this is short-lived so I must enjoy it. I have been coming and going during the days. Enjoying multiple cups of tea and cookies, reading a book, going for walks and jogs in the neighbourhood.. and sitting in the most amazing massage chair- that even massages your feet. It's incredible. We were spoiled with tickets to the movies the other night and of course not having to worry about cooking meals is a big treat itself.
Tomorrow we will have our yearly meeting with a doctors, nurse and therapist. There comes some nervousness with that meeting but it's actually very beneficial to feel that we are all on the same page.
So thankful for this place.
We went in to the children's hospital for an appointment with Neurology as well as Biochemical diseases. This was the first set of appointments with them since finding out Layla's diagnosis. It's a strange feeling to not be in search of what is causing her to be the way she is. This has been their goal for two and a half years and just like that, the search is over. So now I need to change my mindset for these meetings. It's more about what differences we are noticing since the last time we met. At this point they want to mainly observe and keep an eye on her seizures and respiratory system. We will do a 24 hour EEG test to check for seizure activity. This will help the doctors decide if we should increase her medication because we don't want to see any seizures if possible. Right now she has been still having daily absent seizures lasting very short periods. Then we plan on doing a sleep study to ensure that Layla's oxygen levels are staying in the okay range through the night. I'm fairly confident that they are so I'm not that worried about the insane waitlist for that test.
We have also had to push the appointment with the orthopaedic surgeon from February 2018 to October 2017 because the every 6 month follow up x-ray has unfortunately shown that Layla's hips are getting worse at a decent rate. I'm assuming that surgery is going to get pushed a lot sooner than we originally thought. Boo.. this will not be fun for anyone. The strange thing is that we don't notice that Layla is in a lot of pain with her hips, and if she is, she's not making it obvious. Though, she's always been a funny one to figure out so who knows.