Happy New Years

Today, New Years Day, was a day that we did about nothing. We sat and veg'd out throughout most of the day. What this really means is that things were going okay which is great.

Rebekah slept until about 10:15 when we got her up because Grandma and Grandpa were stopping by to say hi. She was throwing a fit when she got up but stopped when I told her she had to be a big girl and no crying if she wanted to see Grandma and Grandpa. It's like an on off switch with her - unless she is really hurting she can do what most little ones do and let the tears and screaming flow or stop just this instant. It is really nice to see her being more normal.

The story started to change this evening, however. It was time for a dressing change for Rebekah. The dressing that covers her central line covers about 1/4 of her chest, nipple and under her arm pit. It is VERY traumatic to have that changed as it pulls on some very sensitive skin. The bio-patch that hides under the dressing and kills any bacteria that might get in there is only good for 7 days so no matter how good the dressing looks it still needs changed on day 7 or Rebekah could get a dangerous infection. Tonight, like always, was difficult. Mommy holds her down and daddy has to remove the dressing, don sterile gloves, sterilize her chest including scrubbing which she hates and get a new bio-patch and dressing on as well as appropriately taping the tubes down. All of this while Rebekah screams "no no no no..." I sometimes wonder if it is tougher on us or her? After the dressing change the feeding tube connection and the cleaning and injection of heparin into her central line was a piece of cake.

While we were doing this in the room next to where Sarah was sleeping (hah!) we started to hear Sarah crying. Thinking that we woke her up with all the screaming daddy went to see if she needed a binky, changed or ??? What we found is depicted in the picture below. Am I a bad daddy because rather than fixing the situation my first instinct was to break out laughing and run and grab a camera? I hope not. Now kiddies, take this as a lesson - DO NOT try and take your jammies off when you are supposed to be sleeping.

While grabbing the closest camera at hand and then looking through the pictures for the one of Sarah above I found that it also had this picture of Rebekah and Sarah on it. Not exactly sure when it was taken but just before being diagnosed as she still has her hair but it does look like you can see the tumor on Rebekah's left side.