Today ended up being a lot more than we bargained for. After getting to our hotel late last night, we took it easy this morning and got to the hospital for her 11:45 appointment. After X-rays, we saw Dr. Cahill, who took one look at her back and was very concerned. He had not been made aware of much of what we had been telling and sending the nurse practitioners. There's a lot of blame that could be made, but that's not really productive right now. At this point, I just want to make sure that doesn't happen again. The important thing is fixing the problems from here on out.
He's not sure what he will see when he gets in there. If bacteria is covering the rod like he suspects, he may have to remove the rods until her body heals. If that happens, she will be in the pinless halo for three months until she can have the big surgery to reinsert the rods. Then she will be in the halo for another 3+ months after. If he can do the surgery now, he will basically redo everything and start over. She will come out of surgery in the pinless halo and will wear it for 3+ months. So the halo is a given...just not sure under what circumstances and for how long. It's going to be pretty miserable for her, because she can't take it off at any time for any circumstances. There's nothing more than a blind wipe down as far as a bath goes, and I can't wash her hair because the halo can't get wet. We will use dry shampoo, but I'm not sure how well that will clean it long term! So I apologize in advance for my girl's appearance. It is what it is.
She had to get a plaster mold done for her halo, and it took forever. She had to lie perfectly still, First on her back, and then on her stomach. It was probably an hour and a half process total. We didn't even know she needed to do this at all, So there was no prepping her. I thought she would be absolutely miserable, but she did so great! She watched cartoons and sang along to Shrek. I was so proud of her. She earned the Barbie she got tonight, for sure!
We ended the appointments by being 2 hours late to our anesthesia appointment, but thankfully they understood that the casting took forever! This was the easiest appointment of the day.
It was a whole lot to take in and I held back some tears as I realized Abby's walking could become very, very limited if this kyphosis isn't under control. Determined to improve this difficult day, we braved the traffic and went to Macy's for a lights and music show. It was narrated by Julie Andrews and Abby loved it! It was worth the crowds to end the day on a good note.
Guys, I seriously have the bravest, toughest little girl who has endured more than anyone should in their lifetime, but she does it all with such joy and grace. I'm in awe of her. I think we can all learn a little about choosing joy from Miss Abby Joy. I definitely did today! In the words of Caleb, "If Abby can have a positive attitude and choose joy with all she goes through, we can with all of our lesser things."
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