Quiet (and Not So Quiet) Moments
October 15, 2007 10:06 AM

I have a few minutes between picking kids up from school, so now is a good time for a new update. I guess the most important thing to talk about is Juliana's upcoming surgery. She is now scheduled for November 1. Dr. Wolfe will remove the only remaining part of the halo (the piece in her mouth). Yes, I said the only remaining part. Thom spoke with Dr. Wolfe a few weeks ago and he just so happened to be picking her up from school that same day. When I came home to grab her and run to therapy she was screaming and her feeding pump was alarming. I went tearing up the stairs and she was dripping wet from the bath and had a bit of blood still dripping from the screw sites.

I did not even realize that it was gone—I was just so focused on finding out why she was screaming. Thom actually had to tell me that it was gone! I was a bit upset for a while. It took me some time to soak it all in and even be able to speak to him. Of course now I am thrilled that it is gone. I am not sure yet what else this surgery will entail. We will not know for sure until we meet with Dr. Wolfe the day before surgery.

Other than preparing ourselves for another surgery things are pretty "normal" around here. School is going well. She is behind in a few areas and right on track in others. Of course communication will always be our biggest obstacle to overcome. She is able to wear her "ears" again now and that really helps.

We have started thinking about next school year already. She will be in kindergarten. Where has the past four and a half years gone? Kindergarten is very fast paced here in our county. The kids really develop and grow educationally during that time. We will be visiting a couple of different schools after Christmas to get a feel for them and see what they could offer to Juliana.

There have been some questions posted on the site and here are the answers to them … Juliana is able to hear a little bit without her "ears" on, however she hears much better with them. Without them we have to yell at her and she always has the TV at the highest volume. With them we can speak in normal voice and the TV could really be at a lower volume, but she likes to take it "all the way" up. When Ariel (The Little Mermaid) is singing I just close the door to the play room and let Juliana have her time. That is the movie du jour right now.

The other question is regarding leaving old pics on the site. If I understand this correctly: We only pay for a medium size storage room and we would have to have a larger storage room to leave everything on the site. I do not understand computers other than to check my mail and post updates. Maybe our fabulous webmaster could answer this question?

My quiet time is just about over so I guess I better wrap this up. I may have a chance to post again before we leave, but no guarantees.

Webmaster: Tami's partially correct about older pictures. The bigger problem is that pictures, which are large in size, require heavy transfer operations—from our server to your browser, and that comes with a price. The more pictures, the more transfers, which drives up our costs.

2007-10-17 02:10 p.m. I guess I should have been a little more clear about the halo. With Dr. Wolfe's permission, Thom cut the wires, unscrewed the halo and removed it. It truly wasn't a difficult thing since all of the screws were already being constantly tightened just to keep it on her head. It was a little terrifying for her just because she didn't know what was happening. I tried to get a picture of her holding it later on (just to send to my mom to scare her) but she would not even look at it. Now when she sees it in her bedroom she points at her face and signs "all done."

—Tami