Sorry folks, the computer was down all weekend!
Friday started out with a follow up appointment. Clearly, Katelin’s caught on and was more anxious than usual during this appointment. It didn’t help that it took FOREVER to get her hooked up for the EEG. The machine was giving the tech a hard time.
I really like the team. Dr. Glaze, the doctor in charge of Katelin, is such a super nice guy, and Katie wouldn’t do anything for him on any visit, not color, not pour, nada. And when he left the room she clapped her hands, poor guy. He’s got the hard job of doing all the exams and doesn’t get to see any of the good stuff. 😦
It was a very long day, but we get to go to the Symphony!! Thank you Ronald McDonald House!! Another woman went along with us and we had a great time and Katelin loved when Santa came out to sing.
Tonight I gave Katelin her last full dose of the NNZ-2566/Placebo. It felt monumental. I shook that bottle ’til I was certain that every bit of the medicine went into my child, clinging to the wonderful things that have happened for her so far, knowing that it was coming to an end (probably) and a weight descended on me. A suffocating fear of having to watch her regress a second time. Almost like a doom gloom was falling like a curtain.
What can be said about this day, but that it sucked. Katelin was so tired (I guess) from staying out late. That all we could do was get through it. Though Katelin was able to recover around dinner time and we could do the craft. 🙂
Only one half dose given today. I feel like time is slipping away.
A beautiful day! Another zoo day and a zoo night. One half dose given in the morning. I am determined not to let the feeling of loss permeate this day. It was a lovely day. Enjoy the sights.
Katelin is clearly having difficulty. Another hard day. Sounds and busyness are bothering her. She won’t eat, and I am finger feeding her today. She’s begun to do her “agitated” talking, which I haven’t heard for almost a month. She’s crying and screaming, and needs to be in her room most of the day. I am bawling, too. I’m trying not to make too much of it, but it’s hard. She’s so very, very sad. I’m talking to her as if she got the real thing and may be “feeling” something is different. I spend most of the day just crying with her. I find out later that almost everyone is praying for her to feel better, people come up to me on Tuesday and tell me so.
Ronald McDonald and a basketball team came to give out gifts. It was a big news deal and I had to bring her upstairs because she was screaming while they were trying to tape, I’m sure they had to start over, no way to edit that out. We stayed upstairs for an hour, and were able to come back down. The rest of the night went ok, and we got back down before they called her room number. She loved all the cute guys.
I did get to laugh today though, about 4pm while we were up in the room calming her down, I got a call from the Army. They wanted to know if Katelin was available. HA HA HA HA HA.