Surgery Update
March 30, 2006 9:40 PM

I know that you all have been waiting all day for this. JULIANA IS DOING GREAT!!! Surgery lasted almost 6 hours and it was very tough. She had two ribs removed and "relocated" to her lower jaw. Her tubes in her nose were replaced with much nicer ones. They are clear and much shorter than the previous ones. And more BMP was also used to fill in the small remaining holes in her head and to replace the ribs that were "relocated". She has a cath going into her incision in her chest which is giving her constant local anesthesia. And her pain is also being managed now with Morphine. All of her vitals are staying very stable and looking great.

At this point we are just trying to keep her comfortable, which means sleeping all of the time. Hopefully tomorrow we will be able to let her wake up a little without too much pain. I will update again tomorrow with more info. Keep praying! She is not out of the woods yet.

—Tami

Back in Miami
March 28, 2006 11:07 PM

Here we are on the emotional rollercoaster once again. We are in Miami now. We arrived here late on Sunday evening. Monday morning, early(6:30 am)Juliana had a sedated CT scan. That went very well.

Today we met with the Craniofacial Team for an evaluation. We were able to see the scan from yesterday. It looked very well as far as what we were hoping to see from the last surgery. On the other hand it changed plans for the upcoming surgery later this week. We were anticipating a fairly uninvasive procedure. At this point it has changed to a very invasive procedure. Instead of changing the tubes in her nose and doing a lower jaw distraction. She will be having another rib removed and split to be used as part of her lower jaw. At the same time she will have more BMP(bone morphagenic protein) used in her skull to fill the remaining holes.

We will be meeting with Dr. Wolfe again tomorrow afternoon to have more questions answered that we have come up with as we have had more time to think this all over. Please keep the prayers coming for surgery and recovery also. This is not going to be an easy procedure or recovery for Juliana.

—Tami

Accepted at School
March 04, 2006 7:08 AM

It sure has been a crazy three weeks around our house. Thom has been out of the country for work. This has sort of been our test for deployment (6 months away) which is coming up. My only saving grace during that time is that both girls will be in school.

Juliana went to visit her new classroom and meet her new classmates recently. There is a video of this on FirstCoastNews for anyone who would like to see it. The children were all so accepting of her. They all treated her like she was no different than they were.

She will actually be starting school in June. We are going to hold off because of the upcoming surgery.

The wonderful, talented, amazing production company that we have been working with is now finishing up editing Juliana's next story. It is scheduled to aire sometime during the first couple of weeks of April. As soon as I have a definate date I will post it. We will also be starting a follow-up documentary late this month or during April.

We are also very excited about a new web page that is in the works right now. It will combine our family page with Nurse Jeanne's page. There will be much more room for info about Juliana and Treacher Collins Syndrome (more pictures too).

—Tami