Moving day

Big change happening around here. We will be moving in a matter of two days to a new house. It's been a very long road considering. Back in April we made the decision to put our house up for sale. We had only been in our house for a year and a half at that point but we were already starting to realize how big Layla was getting and nursing staff were starting to mention how they will hit a point where they are not allowed to carry her up and down the stairs. Unfortunately, there is no way to build a bedroom on the main floor and not enough space (nor money) to cover getting a lift or elevator up to the where the bedrooms are. So we listed. We had offers fall through on our house which made offers fall through for us to make other new houses- there were so many road blocks. It was very discouraging. We continued to update our pros and cons list but knew this was a necessity. Finally, just over a month ago we had an offer on our place stick. The house sold but there was no where for us to go. Plans were made for us to move our things into storage and stay with family while searching for the right place. It wasn't ideal but it would work. Then a week and a half ago we found a vacant house that we deemed worthy of an offer - had a few back and forth offers until they accepted. The best part is that the transition will be smooth. Thank goodness. The new house is not perfect but it hit 80% of our wants/needs so we're happy with that. We will still have to build a ramp off the back side of the house to get Layla inside but once she is inside the bedroom and bathroom are on the same level which will make life a lot easier. The back yard is big and beautiful. The neighbourhood is great- fairly flat for walking. There's a nice elementary school within walking distance. It's minutes away from where Aaron plays soccer regularly. It's closer to his work, our friends and family. There's a lot of great things though right now all I can think about is the piles of boxes surrounding me and the imminent move. Just gotta get through this weekend.
A quick note on Layla's progression. She's been doing a block of speech therapy and it's been really cool to see unique ways that we can get her to communicate. For the past four weeks we have been using Layla's vision as a way to communicate "more". We will hold up a toy that she likes, that plays a jingle, once played we will move it just out of her line of vision and ask if she would like "more?" if she moves her eyes to find it we will take it as that she wants it to be played again. So simple but she's doing it! It's the basic steps that will take her towards choice making. We have been using specific items for object cues to help her know what is coming up next. One cue is a red cloth. I will say "It's time for a bath." and then give her the cloth. Let her touch it and hold it for a while as we make our way to the tub. Soon we will decide on an object to represent going for a walk. Eventually we hope these items could be held up and she could be given the option to choose which she would like to do and then use her eye sight to choose. It only seems right to let her have a voice and an opinion in what she does.

UDN

The undiagnosed diseases network has just published a little blip about Layla based off of our recent visit to UCLA in July. The hope is to find other children in the world similar to her and have research done that will help families going forward. We are so fortunate for this opportunity and are thankful to have some incredible doctors take on this task.

https://undiagnosed.hms.harvard.edu/participants/participant-038/

A season of REST

Just yesterday I was sharing with Aaron how thankful I am that Layla's sleep has improved. The past near 6 months she has consistently (85% of the time) been sleeping for 6-8 hours straight at night. And to top it off she has been falling asleep often on her own! This has been life changing for our household. We all like each other a bit more when decent sleeps are happening. Then of course as soon as we have this conversation she goes ahead and has a rough night last night. What are the chances? This is why I'm nervous to speak too soon. Fingers crossed it's a one off. Every time she has a night with little sleep my heart rate rises and my eyes stare to watch seizure activity. Sleepless nights are a trigger and I pray that we will not see another grand mal seizure. So far so good today. A few strange symptoms but I believe they are just to do with the lack of sleep and trying to get her caught up. The great news is that it's Monday which means we have a overnight nurse who will keep watch of her and I won't have to get up if she does.
It's my second week home from my vacation and we have an abundance of changes happening in our lives (selling our house, looking for a house to buy, where to live and store out things in the mean time, job changes, in search of a preschool, in search of a new respite worker.. sheesh.) I was able to sneak away for a wonderful ten day vacation in Australia where my one sister lives with her husband and doggies. It was the longest I've been away from Layla but she was in very capable hands with her dad and then at Canuck Place for majority of the time. She did so great. They took her on an outting to a pumpkin patch and then later she carved a pumpkin with the Canuck Players who come every year. Who knew that I really needed that time away to prepare for the stresses I was coming home too. I might need another vacation in a few months to destress again. Maybe not quite as far away.
While I was gone Aaron met with the orthopaedic surgeon for Layla's hips. The doctor is still happy with the range of motion and very glad to see that she's not seeming to be in any pain. Even with them going out of place she believes we can continue to push the surgery. We will go for another appointment in 3 months to keep an eye on the progress. The goal is to have her as old as possible.
Appointment wise, it's been pretty quiet lately. We did a stint of physiotherapy and now are in the process of a speech therapy block of appointments. Like I posted before, since having the diagnosis it seems like we're just kind of waiting around for something bad to happen and then see the appropriate specialist for that issue.
I'm trying to relish in this rest and be thankful. It is a good thing. She is so content and strong (for her). My bond has grown immensely. I love her so much more than I thought I would ever be able to. Just talking about her makes me smile. We take time every day- multiple times a day- to just cuddle on the couch and soak in each other. Now I'm noticing new people having legitimate bonds with our sweet gal. It's a beautiful thing to watch. When given the opportunity she is able to find a special place in others' hearts and it breaks down some of the walls I've put up around my heart. As any mother's heart you never want to see your child be treated as any sort of an outcast. My own fear can prevent others from seeing the value in children such as beautiful Layla so for that I am sorry. Because I know she is definitely worth knowing.