Standing!

I hope you enjoyed David's post last night. He was beaming over Taylor's big move so I told him he should document his excitement! As we both know so well, we have to celebrate the wins - we are so thrilled for Taylor and they help sustain us all during the slow times.

We are working on so much with her right now. She is so ready to move and is making great progress. She is working on standing up! And she is getting quite good. She can stand - really unassisted - for about 10 seconds now. Of course, Susan has a technique for everything. She is practicing standing in a few different ways - she always has a little stool behind her and when her legs get tired, she has to sit on the stool. The goal is for her to practice sitting when she is tired, rather than falling. In probably the most unique use of props yet, she has these little - real - toilet plungers that she holds in both hands and uses essentially as walking sticks, while standing. I'll post a picture soon - you'll have to see it to believe it. The goal is for her to use the sticks to help her balance, yet they aren't very sturdy so she has to balance check herself frequently. She has to hold the sticks slightly in front of her to encourage her to keep her arms out - again, to train her arms to catch herself if she falls. It's starting to connect for her and she really enjoys standing. She gets frustrated sometimes when she wants to sit and can't quite figure out how to make her legs bend - you can see her face get frustrated and she'll cry out, and then sit. Her dedication is truly amazing.

We also are working on some small things, that will hopefully pay big dividends. One of the things that is great about Susan is her attention to detail. She wants Taylor to be as "normal" as possible. So, one of the things we're working on is her mouth. Yes, her mouth. Basically, her mouth needs help to develop tone, or the ability to use her jaw/mouth muscles. Again, you never think about how hard it is for your mouth to work - you need to control your muscles in your mouth to hold you mouth normally (without gaping open), to control drooling, to eat and to speak. So, Susan has encouraged us to work with Taylor on strengthening her mouth muscles. Basically, anytime her mouth is open (gaping open) we are supposed to push down on her tongue, which encourages her to close her mouth. We also can tap firmly underneath her chin -this encourages her to close her mouth and swallow. It seems a little strange, but it is important for Taylor to look "normal" and to help her with eating and speaking. Had to share this detail because it is a great example of how so many little things add up.

We're working on lots more, but that's enough for tonight. We are so happy today - mostly because of Taylor's advancements and also because we got a great night of sleep last night. Still adjusting to her medicine, Taylor has been on a stretch where she is getting up at 4:30-5am. Then she will take a morning and afternoon nap. If she will just sleep in to a normal time, she won't need the morning nap again. This morning, she actually slept until 6:40am -the whole house did! This is so rare for us and so needed. It was a push to get Taylor fed before Susan showed up at 7am -I've given up and don't even bother getting out of my pj's for Susan anymore. Thankfully she doesn't seem to mind. Here's to more nights of great sleep!