Saturday, August 8, 2009

Just a Quick Note

We returned home Friday evening around 6 pm. Yesterday ended up being a very productive day. Usually we go to Florida Hospital (which we like) but the doctor who ordered the Ph Probe is associated with Arnold Palmer Hospital for Children so that is where we were for the last couple of days. It was good to see different doctors and to hear what they think is going on and what we should do. One doctor in particular, Dr. S was absolutely amazed to see Brianna. She is the oldest Trisomy 18 child he has ever seen. And what a show she put on for him. Goofy, silly, rolling around, sitting up, babbling, the whole 9 yards! He was mesmerized. We ended up doing another EKG and EEG, chest x-ray and a stomach emptying procedure (formula and a dye and put into her stomach through her G-tube and she laid under a scanner that recorded how long it took for her stomach to empty. She laid there an hour and a half, smiling, clapping and laughing at the many cartoon stickers on the scanner. She is so darn adorable.

We will get the results on Monday. We are still on the path of doing the Nissan Fundoplication but we also want to rule out other problems while she is in the hospital. As my husband says, it would be frustrating to do the Nissan only to find out it was something else causing the blue spells.

Here's a picture of Bri getting all wired up for an EEG. She was so patient.

After getting the wires connected, her head is wrapped to keep them in place. I HAD to add the bow.


  1. She is so darn adorable. Those eyes and that precious face is beautiful. Please let us know Monday what they find out. I am so glad you got a different perspective.

  2. love these. so so so adorable. such a testimony to never give up on life!!! so proud of you for showing the world!

  3. she's a cutie even with her head wrapped in gauze ;) gotta love that she's amazing doctors and showing them what strong stuff she's made of.

  4. Thanks for the update. I LOVE to hear of situtations where the docs are amazed by these special kids.

    I think it is important that families with special kids keep former doctors (supportive or not) informed of the progress of the kids. I know how busy you all are but it is a tremendous service to future families.

    Last year I researched all I could find from the last 10 yrs published in medical journal on tri 13/18. Once I was finished, I wondered how any sane doctor could suggest prolonging the life of a child that fit the description form the journals.

    Needless to say, there was no joy, "cuteness" (like the kids I know) or ability whatsoever. We parents have to educate the doctors.

    One leading American neonatologist even told me that t13/18 kids are "not sentient". Imagine that!!!

    Annie's mom

  5. She is so darn adorable! The ribbon is so pretty on the bandage. I can just imagine her amazing the doc. Vera is always sleeping and I always wish I could show the docs what she can do!