I will try to get posted to Facebook when Tammy posts on Caring Bridge. I will just copy and paste what she types over there so that everyone will be able to see the updates. Check back regularly to see updates about Christian, Tammy and Kaitlyn who are in Florida.
Hello from RAINY & COLD FLORIDA! Christian's baptism went great! Thanks to everyone who came - it meant the world to us to have you there! He was so cute up there - the water was almost up to his chin :o) We finally got into Ponte Vedra at 11:30pm and found a beautiful house to welcome us. Susan even had cute gift baskets waiting for Christian and Kaitlyn - THANKS Susan, they loved them!! Thanks to those of you who contributed to our trip to Florida, it was such a blessing. It was an awesome day!
We've had a busy couple of days full of doctor appointments. We met with the Pediatric Oncologist, the Neurosurgeon, and the Radiation Oncologist. He will have surgery on Thursday to have the screws and port put in. The screws are small titanium screws that will not be removed after surgery because they said they are difficult to remove and they have no negative effect on the body. There will be 4 screws, 2 front (left and right) and 2 back (left and right) toward the top of the head. There is a possibility of getting a feeding tube depending on how sore his throat gets and if he can swallow or not. They like to put them in before treatment starts in case they need them later, so we are obviously praying they decide that he will not need one. The Radiation Oncologist feels pretty confident in low effects from the treatment, so that's our plan and we are sticking to it :o) We will be doing the simulation on Friday. This is a "dry run" of the treatment where they make their plan and set the computers for Christian's specific treatment details. It takes about a week to do this, so we will not be starting treatment until Tuesday 1/27/09. We have decided NOT to tell Christian that he is having screws put in his head because he is getting pretty overwhelmed with all the doctor appointments and we didn't want to freak him out. He learned about the port today and knows that he has to have surgery to have it put in and a sweet little boy named Dylan showed him what his port looks like today, so I think that may have helped. He is doing pretty well overall though. God has given us all tremendous strength and peace to handle this all.
Kaitlyn is doing awesome too. She is such a great little sister. She prays for him every night and likes to take care of him, although he isn't always open to that. She is handling all the craziness very well.
Everyone here is SO nice - it makes us feel like we are back home at Children's Healthcare of Atlanta.
I'm sorry for not returning phone calls since we've been here, but want you to know how much we appreciate your calls. We have the day off tomorrow, so we are going to do something fun with the kids. The kids are dying to walk on the beach, so IF it stops raining, that's where we'll be!
We hope everyone is doing well and want you to know that you are in OUR prayers also.
WE MISS YOU DADDY!!! Can't wait to see you again!
Love you all!
PS ~ I added som pics from Sunday...... night-night!