Purple Haze.... Day 152 13APR09

Joshua has looked better.

Yesterday really took its toll on him. We noticed  yesterday afternoon as the day progressed that he was looking more and more tired. Renee and I sense how Joshua is feeling, we notice things that normal parents would never see. The slight little miss-steps, the tired way he picks up his foot. Little grimaces that cross his face and disappear in the blink of an eye. The way he will murmur when we are holding him or the little shivers that will sweep his body on a warm day like ripples on a pond. I will notice one of these things and look over at Renee. Our eyes will meet across the room and I know that she saw it too. We don't make a fuss about it, we just adjust and quietly start keeping track. You become an expert on noticing these things. On watching every small thing that your child does. We never have to discuss our plan of action when we are out in public, we both know when it is time to leave or have Josh take a nap or maybe just time to scale back his activities.

His ANC today has dropped to 697 and his platelets are down to 95. He is still having stomach pains so he was prescribed Ativan to help out. It helped all right. Ten minutes after taking it Joshua was stoned. He was siting on the bed with glassy eyes watching TV with a large bag of cheeto's tucked under his arm. Periodically wiping his hand off on his shirt when it got too cheesy. Stomach ache a distant and I am sure hazy memory. Next thing you know he will be asking for a black light and a lava lamp for his room.

Renee went out in the hallway to talk with the child life specialist and she heard Joshua talking away in the room. When she opened the door and asked him who he was talking to he looked at her dumbstruck. He looked over at the bed where she normally sits, back to the door, back to the bed. He could not figure out how she got out of the room. At this point he began to giggle in one of those silly, I am wrecked out of my mind, ways. Renee swears he was humming the melody to Purple Haze under his breath.

Right now we are stuck in waiting mode. Waiting to see if we can figure out what is giving Joshua all the problems he is currently having. The fever is still there and the stomach pains have been going on for quite a while now. He may get an abdominal CT tomorrow to take a look at the lining of his intestines and stomach. Renee and I would really like to finally have some answers. He looked really bad today and is back to being the frail little man of weeks past. If he sits up he gets a really bad headache and the Ativan makes his eyes really dry and scratchy. He was resting tonight when I talked to Renee. Hopefully he will get a good nights sleep and maybe we will be closer to an answer in the morning.

Until then we wait and kiss the sky.