For this child I prayed.

For this child I prayed.

Monday, 6 November 2017

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.



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