Surgery Update and Other News
August 31, 2008 9:00 AM

I'm sure you have all been waiting for this! Juliana had surgery on Aug. 20 and she is recovering very well. However, she did not have the procedure that I had written about in my last update. We had made all of the necessary arrangements (hotel room for 2+ weeks, supplies ordered and packed for 2+ weeks, care for Kendra to keep her life "normal" for 2+ weeks), but Dr. Wolfe thought about the procedure more and decided to add an additional step into the process. He placed a tissue expander into her upper back area to help create more tissue for him to work with when he does finally do the other procedure. I was actually very relieved that he decided to do it this way.

The tissue expander is sort of like a balloon under her skin. Right now it is flat. She has a port (imagine it as a pin cushion) hanging out of her skin under her left arm. On September 14 we will begin injecting saline solution into the port twice a day. It is only 4 ml per injection. Not significant enough for her to notice each time, but will slowly fill the balloon to 250 ml (the size of a baby bottle). Once that is complete we will return to Miami and Dr. Wolfe will do the procedure that we had planned for this time.

She actually did get to go to school for the first day. I had really tossed the idea around, because I didn't want to tease her by letting her go one day and then not knowing when she would be returning. But I spoke with her teacher about it and we decided that it would be better for her to go on the first day so that she would know what to expect when she did return. And how on earth was I going to tell her that she could not go when we were taking Kendra anyway? She had chosen the" perfect" sneakers and the "perfect" backpack. She was ready! And she loved it. She is so ready to go back. I held her out all of last week, just to give her enough time to recover. But she will be returning on Tuesday when class is back in session.

The girls have been enjoying talking to Thom every day. They feel so connected to him during this deployment. We have Skype on the computers and they are able to see him every day. Kendra has it all figured out and she calls him whenever she wants to. Deployments now certainly are not like they used to be. I would wait for him to call once a week whenever he could. And we would send letters by snail mail. Being able to use Skype is really nice. I can send the girls in to call Daddy and I can actually get some work done without being the mediator all of the time. He can "enjoy" the arguing and tattling for a while!

They used to be so loving and kind to each other. What happened to that? They are at the tattling and fighting ages. Juliana is such an instigator, too. She will antagonize Kendra and then come and tell on her for something. I just tell them over and over, "I don't care, deal with it!"

Oh, I almost forgot to tell you about some very exciting news about Juliana. She has recently been able to start wearing her speaking valve on her trach. This is so exciting for us. The valve is one way, so she can take air in through it, but has to push the air out past her vocal cords. This enables her to "talk." Sometimes, it is awesome and sometimes, I just pluck it off when I want her to hush. When she has it on she is so loud! We have waited five years for this.

Hopefully I will have some funny stories to share next time. I will try to get some recent pics posted soon too.

—Tami