This time last year, after struggling for 5 months with an NG feeding tube, Taylor had g-tube surgery. I didn't think she was ever going to get back to oral feeds. Now she's sucking back 2 bottles a day by mouth, and we're looking to put a pureed meal back into the picture. Way to go girl!
This time last year we couldn't kiss Taylor on the cheek. The weekly feeding tube changes had caused her so much trauma that you couldn't go near her face without her freaking out. Now, she graciously accepts the hundreds of kisses a day we give her now.
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| And Granny kisses are extra special |
This time last year Taylor was having several hundred seizures a day. That's no exaggeration. Now her EEG shows 95% improvement in seizure activity. Remarkable is the word our wonderful neurologist Dr. Bello used. And yes she is...remarkable! She is so very much more alert and aware of her surroundings.
This time last year Taylor's smiles were still few, and very far in between. Since July Taylor has been smiling every single day. They are so beautiful and precious and we celebrate every single one. No smile of Taylor's goes unnoticed in this house! She's even given us her first few little laughs, and let me tell you, when she graces us with one of those, it puts us over the moon.
This time last year we were starting to talk about getting her a walker. Not for the goal of taking steps just yet, but for the goal of tolerating it first and being able to hold her head up. Supergirl is rockin' the whole head control thing, and not only is she tolerating her walker, she has actually pushed herself to standing in it for about 8 seconds at a time!
Supergirl has pulled something new and very exciting out of her bag of tricks. When brought up to a standing position with her AFO's on, she's putting full weight through her legs, standing up tall, with very little support at her waist. She did this on Friday at school for her aide Vanessa, and put on a repeat performance for us when they got home. Vanessa was just bursting with excitement to show us, you could see how proud she was of our little girl, and that makes my heart happy.
This time last year we were still holding Taylor the way you would a newborn, cradled in your arms. If you tried to hold her upright, she arched back straight away with such force. Now we can hold her on our hip and she uses her strength to hold herself up beautifully. I love holding her like this.
This time last year we were still working on one of her very first goals of bringing her hands to midline. Taylor brings her hands together frequently now, it's very sweet to watch the way she plays with them.
This time last year, I hate to admit that I was doubtful about the prospect of Taylor ever sitting independently. Well...on October 13th, Supergirl sat independently for the first time and did it for 8 seconds! She doesn't do it consistently, but the time has been improving bit by bit. I am thrilled that she's proving me wrong. On the weekend I put her into a sitting position and she maintained it independently for 45 seconds! And she did it four times in a row.
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| Instagram shot of Marissa keeping Taylor motivated to sit all by herself. |
This time last year Taylor was very quiet, she wasn't using much of her voice. But now? Wow, does she have a voice! And she loves to share it, especially at school and swimming. Lots of big drawn out Ahhh's. Lately, she loves blowing raspberries with her tongue sticking out, I think it feels funny to her.
She's still with Pacekids, and since her preschool programming started there this fall, she's doing all sorts of fun and new things. Time in the multi-sensory room which she always loves, music therapy with Sarah on Fridays, swimming outings, field trips, cause and effect games on the computer using a switch, using a light box, lots of sensory play, and she's starting to use the track system which I'm particularly excited about. She gets put into a harness and then hangs from the track in the ceiling with her feet on the floor. It can be used for walking, for jumping (sort of like a heavy duty jolly jumper), swinging. She's only been in it twice so far, but tolerated it well and I think once she realizes what she can do in it, we're going to see her do more great things. Once she realizes that she can use the legs that she loves to kick to actually bounce herself up and down, there'll be no stopping her!
We had a little Anniversary toast to Taylor tonight. This past year has been incredible for our special girl, so we raised our glasses of bubbly (um...ginger ale) and clinked them together, "To Taylor".
