Has come and gone! (and more than half of October!!)
I really can't believe how time has been flying by. I realized tonight as I began to recap her latest eye exam, surgery, and botox under anesthesia that I haven't even touched on her power chair!
I've been busy with my new job. I couldn't be happier with the people I work with, or the kids! I'm in the groove of working and handling things at home, and so far so good! Unfortunately even though I'm not in the same classroom everyday, I do go to 10 schools and have been subjected to all kinds of germs. I feel like I've been sick for two weeks. And I never get sick!
I think that we (finally) have a set schedule for Kendall's school, and a plan for her advancing with her communication device. It took multiple meetings, e-mails, phone calls, and sleepless nights to get things in line. Sometimes people are resistant to change. I get that. But I'm not giving in. Inclusion and a collaborative approach to her communication is best practice. And I know Mansfield ISD wants that. And I've recently come to find out parents like me are considered "political cases." I'm OK with that also...though I do prefer "advocate" or "involved parent." Bottom line, I'm OK to be in your face when I need to, and I'm not going anywhere.
Kendall did get a new power chair the first week or so of school. She rides the bus in it, and is beginning to move it in the hallways and outside on her own. She operates it with a joystick which is completely reasonable for her. I believe it is a matter of will and not ability! My darling children tend to enjoy having things done for them. We haven't taken the steps toward a van conversion yet, but I'm sure it is in our near future.
This past week, Kendall had eye muscle surgery. She was already going under for a few other things, so we went ahead and had the surgery for the second time. It was a long morning as you can see from the picture of Justin! Surgery waiting rooms are stressful, and when the anesthesiologist comes out to talk to you, it usually isn't a good sign! (her sugars went super high and we had unplugged her insulin pump, but it scared me to death!) Anyway, she's still aphakic (without her biological lenses) and has esotropia, ambliopia, and apparently optic nerve atrophy. Her pressures are down in both eyes, confirming the thought that she isn't developing glaucoma, and the elevated pressures (29 in her right and 21 in her left) are due to a thicker membrane in her corneas. Her left eye is ready for an inocular lens implant and her right eye may or may not be....so before the end of the year, we are going to attempt to put it in her right eye first, and if it goes as planned, we will do the left eye the next week. If it's still not ready, we wait another year. So...she could have implants by January! It's been a long time coming! Her nystagmus has dampened a bit since the muscle surgery...so that's good. She's still crying vampire tears though...
We also did Botox again. She had great success with it the first time. When it wore off we could really notice her being more tight in her hips and shoulders. Hopefully that combined with the new Theratog suit will improve her sitting even more. She's getting so strong!
Kendall started her first season of t-ball through the Miracle League. She doesn't love it, but the environment and people we get to interact with weekly is worth it! Kamden and her daddy have been her buddies on the field. She still gets spooked by the cheering and hates sitting still, but she's warming up to it. We have all enjoyed the car ride together and lunch afterward. Its kinda neat to have a weekend thing just for Kendall. We will definitely be playing again.
We are in the throws of a bathroom remodel. (one of the motivating factors for me to go back to work!) My back can't lift Kendall Briggs in and out of that tub much longer! We are super excited about the transformation.
I'm sure there's more to cover that I'm forgetting...Maybe I will update again next month! It feels good to get it out :)
This world needs to hear his song
19 hours ago