I've been finding it hard to decide what to write lately so I haven't written at all. I've been comfortable with the way things are going and am a little afraid of jinxing us if I talk too much about how well things are going. We've all settled into our summer routine, Danny and Philip are becoming best buds and Philip's health has been amazing the past few months. His last bloodwork came back pretty much the best it's been in a while. His total bilirubin has gone down to 1.7 and his GGT(which indicates irritation in the biliary system) is for the first time ever in normal range.
This threw the doc for a loop and she thinks it could be a lab error but we will wait to see with his next bloodwork. His last endoscopy also went great. They didn't have to treat anything in his esophagus so we get to wait three months before repeating. All of this is great stuff and we are celebrating every second of our "normalcy" lately.
Yet, I cant seem to shake this anxious feeling I get every now and then. I'll be sitting at work, or in bed at night and a feeling starts to creep in. Kind of like that nervous feeling when you're on a roller coaster and your making your way to the top of the hill, leaning back looking at the track in front of you, waiting to reach the top, then you see nothing but sky and you know its coming.
That feeling.
The drop...And then it happens.
But instead of my stomach being left at he top of the hill, it's my heart.
A little jump, a skip, a palpitation. Call it what you will.
Maybe its because I know how quickly things can change and I am enjoying how nice things have been lately, or because I recently have been following a story of a little boy who is the same age as Philip with the same disease who urgently needed a transplant. I just cant get it out of my head.
I try not to show my anxiety too much in front of the kids because I know they can sense these things. I must not be doing a good job lately though because Danny is showing signs of anxiety for Philip. He recently confided in me that he had a dream that Philip ran into the street and just missed getting hit by a car. And he's become very protective of him when we are outside and Philip takes a few steps away from us. He runs and yells for Philip to stay and grabs him and tries to pull him back. This breaks my heart because I am the one supposed to be worrying, not him. His job is to play and have fun and it makes me so sad that he thinks these things. The doctor said its normal for him to have these feelings because he cares. He knows Philip is sick and he doesn't really know any other way to express his feelings about it. And she re-iterated to him that its ok to have these feelings but its Mom and Dad's job to worry, not his.
We see Mt. Sinai and have his next endoscopy in August. So until then we'll take it as it comes and enjoy the status quo.
