A Whole New World

Look at my baby girl.. STANDING! I've always tried to not even imagine her standing because it's depressing to be reminded of the fact that we have been told she will not. Having this frame gives her that capability and it sure is emotional. What I wouldn't give to have her able on her own.. She doesn't even look like the Layla I know. Doesn't she look so tall!? I wonder what she is thinking when in these new positions? What does the world look like to her now? The first few times we put her in the frame she only gave us tears but she is slowly getting used to it. If you look closely you can see that she is just a tiny bit too short for it so we've used chilli pepper coasters to give her that bit of height... whatever works right? Physio is going to try and get some ankle braces to help with support as the weight on her ankles and feet could be part of why she doesn't love it quite yet. 

 We are so fortunate to have the government fund a few assistive devices to help everyday tasks become a little bit easier and possibly help build Layla's muscle tone. For now we have the standing frame and stroller. In the next few weeks we will be getting a high/low seat for around the house as well as some sort of play mat. With these devices I should be able to do a lot more physical and visual exercises with Layla. Though she keeps falling asleep in the stroller so not sure how much learning she'll do in there.. but I can't really complain about that. When the therapists come over most of the exercises require two people. Now with freeing up my hands I will be able to do most of them on my own. Part of the goal as well is to have her be more stimulated in the day so that she might sleep more at night. I'm supposed to wheel her into the kitchen while I cook, bring her into the bathroom while I get ready in the morning etc and hopefully with the upright angle she can see a bit more than her usual laying down position. We're hoping to get her excited about having her eyes open, since it's so much work to open them wide. 

The special equipment is going to take a bit of getting used to. Aaron and I were discussing how having her in a special stroller might mean we will have people state less "Ooh she's sleeping!" I'm unsure of what the new comments might be. I assume that the stroller might speak for itself in a sense and less people will make their funny comments.
Last week one of her doctors said to Aaron and myself "What is new with Layla? What is she doing that she didn't before?" to which I replied "mm... nothing that I can think of." It's awful that I couldn't come up with anything. I expect some comments like that from random people but I was hurt that he of all people would ask that. If it was said in different wording it might not be as bad. In Layla's defence she has been sick for a majority of this winter season, which I'm sure isn't helping with any development. I am extremely thankful that Layla has been able to fight through the sicknesses so far. As her parents, it hasn't been easy taking care of her. Especially functioning on such little amount of sleep. Amazingly, her strength shows when she coughs. Her tone is is so low all the time but when she coughs or sneezes all her limbs flail and she gets out those secretions. Everyone is very happy about that! We spent one night in the hospital last week but that is it this winter. The goal is to avoid hospitals if possible to ward off catching any illnesses. Obviously that is the most common place for them. The last two nights I've gotten a little longer chunks of sleep out of this girl so fingers crossed we are on the up and up! Spring please come soon!