The past few months...

The past few months I've been waiting to get a calm moment to update on everything going on with Layla. The calm hasn't really come, and changes are happening on the regular. But I'll do my best to fill in where we're at with some of the big updates.
Three weeks from July into August Layla spent in the hospital for something we never got concrete answers for. Pneumonia, a UTI and some kidney stones were discovered but they didn't explain why her infection levels were so high, causing her to be basically comatose and continued to rise despite  multiple antibiotics. Eventually she turned around and we made it home mid August. One week later I stepped out to go on a short hike with a friend when my nurse called to let me know Layla was seizure and she couldn't get her out of it with the meds and support we had at home. Not wanting to stay back in the hospital so soon after the last long stay- once she was out of the seizure and recovered Canuck Place offered to have us come stay there and have her monitored until she felt more stable to be home. We tried very hard to be home before her fourth birthday but that didn't happen. The seizures continued to be hard to control. Some family came out to Canuck Place to celebrate. It was small and nice to have them see where Layla has spent so much of her time this year. Nurses covered her in balloons on her birthday morning and celebrated our sweet girl and the big deal that turning four is for her. The doctors added more meds including trying cbd oil. These didn't take away the seizures but slowly they became more manageable and after a couple more weeks we were home.
Exhausted, but home. We needed a break. So we booked a holiday. Might not seem like the best idea, considering where Layla had been but it was a necessity. Aaron and I just wanted to be in a place where we didn't have to think about much.. just decisions on pools, beaches, food and drinks..ohhh Mexico was wonderful! And even better that Layla behaved while we were gone. Though this trip seems like a lifetime ago.. only a month ago but I could use another one. I'm not sure how to make my reality where I go on a trip once a month. I may even settle for every other.
Given everything Layla did not start preschool in September. It was a bit sad but we couldn't just throw her to the wolves.. and by wolves I mean small children covered in germs. In the spring we will have to decide if Kindergarten is the best option or to keep her home another year. The social aspect was my main priority when considering school. But we're fortunate to have lots of close friends and family with kids who Layla sees on a pretty regular basis. In a less structured setting we are able to decide when Layla has had enough, needs to sleep and what she can participate in. It's nice to keep that control a bit longer.
Layla's hip surgery finally got booked. Later than I had hoped but it's on November 27th. The pain has become much worse recently, really highlighting the need. The pain meds she was prescribed have not been enough and it's harder to predict when the pain will come. So she has just started some much stronger opioids to try and keep her comfortable for the next six weeks while we wait. While under anesthetic for her hips a general surgeon will place a VAD port which is a permanent direct access spot for IVs and bloodwork. I've written multiple times about how hard it is to get a vein in Layla, even on her best of days. Back in March we had a very traumatizing experience when she needed to have three drills in her bone for IV access. By having this port placed, we won't ever have to do that again. Thank goodness. Our hopes and prayers are that after the long recovery from this surgery Layla will have less pain, less seizures and will be given a bit of a break in the new year.