The Terrible Two's
June 30, 2005 8:44 PM

Wow, I had never really experienced terrible two's before now. Juliana is teaching me all about it. As I sat down to begin typing this she came to me with something on her finger. I looked down to take it from her and it was a booger. Never a dull moment in this house.

She only does what she wants to do when she wants to do it. She walks all over the place in the house, but when we step outside to leave or when we are out somewhere she takes a step or two and sits down. She knows that I have no choice but to pick her up then. For only being two she certainly is smart.

She is continuing to do very well with her signing. She knows all of the colors of the rainbow now. She has learned to make some squeeky noises with her trach too. She is making two different noises now. I guess her first word was Uh Oh and the other noise is for all done or all gone.

One of her favorite things to do now is to dance. We never get enough of the Silly Songs. She enjoys the Hokey Pokey. She also enjoys wrestling with Kendra. Of course Kendra is usually the one that ends up getting hurt.

I will update again soon with more funny things that she is doing. They usually come pretty often in our house.

—Tami

Time to be a Kid
June 14, 2005 3:31 PM

Our trip to Miami went very well. Dr. Wolfe removed the bar from Juliana's lower jaw that was being used for a distraction (to pull the jaw out farther). She is definitely a happier girl without it.

We are certainly going through terrible two's with her. She only does what she wants to do when she wants to do it. She is a good helper though. She helps pick up her toys, puts her clothes in the laundry and helps unload the dishwasher.

We are hoping to get to go on a short over night trip and a longer four day trip this summer. We are doing our best to let her be a kid now.

Dr. Wolfe has decided to hold off for a few months on anything else. Her next surgery will be late August or sometime in September. At that time he will just be doing a little work on her mouth, nothing too major.

We received word that the documentary will be airing on Discovery Health Channel on August 8 at 9pm EST. Put it on your calendars!

—Tami

Close Call
June 05, 2005 12:38 AM

To all who have seen the news story and heard from us personally, Thank you for your thoughts and prayers. They have worked. Juliana is doing fantastic and will be coming home from the hospital tomorrow.

To those of you who have not heard, we almost lost Juliana on Friday afternoon. Her daddy and I had stepped outside to receive a delivery. At the time Juliana was sitting in the living room with Kendra watching a movie and eating her lunch. As I was coming into the house Kendra met me at the door to tell me that her feeding tube came apart. No big deal I would just plug it back in—well it wasn't that simple. Juliana had also pulled out her trach tube. She was face down on the living room floor, blue, cold and lifeless. I immediately rushed her to her room to reinsert a trach, nothing happened. I began giving her breaths into her trach, still nothing happened. By that time Kendra had gotten Thom to come in and he began working on her while I called 911. While I was on the line with 911 Thom was able to recusitate her and we began to give her oxygen. She was air lifted to our local children's hospital.

By later friday evening she was awake and doing very well. She has continued to progress very quickly and came off of the ventilator and all oxygen this morning. She is doing so well that she is back to pulling her sister's hair and doing all of the normal things that Weena does. She will be coming home tomorrow and we will be flying to Miami on Wednesday for a check-up with Dr. Wolfe. More updates will come soon.

As soon as I figure out this new computer program I will be changing the pictures, keep checking back. Thank you for all of the continued thoughts and prayers. God is so Good!

—Tami