Abbie has been doing great in important ways while being challenged in others. She has needed quite a bit of oxygen this week, which prevented us from going to PT/OT on Thursday and Speech clinic on Friday..a big bummer for my social girl. But, as I always suspect when she needs oxygen without having a junky chest, it was just more healing.
On Thursday I showed Genevieve Abbie’s shape bucket that we are using to reinforce her tactile and visual identification of shapes. Later, I walked in to find them working with the shapes, but Genevieve was laughing through tears. Obviously, I asked why, and she said, “Oh! I just got off the phone with my auntie telling her about this, and now I can tell you! Abbie is tracking with her eyes!!” Not that I doubt Genevieve, but we have been waiting so long for this, that I didn’t want to get excited prematurely. So, they showed me! First Abbie followed the red triangle up, then down very easily. Following to the right and left was harder, and a little slower, but she did it!!
Her left ankle was injured three weeks ago, and since then her standing program has been virtually nonexistant. I wanted to get her up again, so we tried on Friday. I put her at about 70 degrees inclination, and she did great for twenty minutes. I was happy with this, but wanted to see how she would do if we took her to 80 degrees. As soon as we increased the angle, she sighed deeply as if saying, “Oh, thank you!! It feels so good to stand up!” She ended up staying on her feet for 25 minutes, which was amazing given that she hasn’t been standing at all lately.
This coming week has many important appointments. The one I am praying the hardest about comes tomorrow, as we head to Shriner’s. I know we will get new films of Abbie’s hips and spine, and will surely discuss the possible hip surgery. I am so conflicted. I know that orthopedically she probably does need the surgery, but I am looking at her total recovery. She has a fragile brain architecture and is gaining new things each day it seems. I don’t know if I want to jeopardize that with a lengthy surgery (i.e. lots of anesthesia), inserting metal into her body, dealing with post-op pain (and the meds to control it), as well as the prolonged recovery. Please pray for wisdom in abundance!
On Wednesday we will meet with her case managers to update her care plan. I am hoping this will be a relatively uneventful meeting. Thursday will be our first official IEP meeting at the school. Again, I am hopeful that we have a good feel for how this meeting will go, so it should not be a confrontation or struggle, just one step in the process.
Overall, these are good days with Abbie being very present and happy most of the time. As we ease into August, and her birthday nears there is so much to be thankful for. I am not postponing joy any more — as in waiting for her to be healed to be happy. There is joy (and enjoyment) in each day for us now, some days it wears a bit of a disguise, but we’ve become more skilled at finding it in the shadows.