Eight AM

Its Monday. Trevor got off to school with his usu all style. Everything is ready by the door, but then there is always something missing. Can't find his shoes, missing reading book, backpack is broken. Today it was "where are my shoes?". Now I wait until 8:00 to call the clinic. I need to know if Riley needs to take the Prednizone or wait like the cyclosporine until after blood draw. I was told the doctors want a base line before pills. He is to bring everything with him but not take the pills.

Because we left on the weekend, I am not even sure what time our appointment is today. So I am camped out by the phone waiting for the clinic to open so I can call. I let Riley sleep. He needs the sleep and he sleeps so soundly.

Yesterday was fantastic. Tom enjoyed talking to Bill, who, like him believes in being more informed than the doctor regarding the disease. They could talk the talk together. he is at work today since this is just a simple follow up and maybe platelets. I cant help praying we'll walk into the clinic and find his blood all cured, his numbers climbing, as if he just had a little flu.
I still have a hard time getting over the fact he looks fine.

Dinner last night was mac and cheese, made by Riley's Principal no less. She lives in our neighborhood and wanted to bring a meal over. I told her old fashioned mac and cheese would be lovely. The boys did love it. There was a fruit salad to go with it. It is so nice to not have to go to the store yet. I feel like a caveman entrenched in a blizzard. Its cozy by the fire with the storm raging outside, but eventually I will have to go get more food, face the real world. Do the normal things.

Riley has a Hawaiian pillow case on his bed. A friend made two pillow cases. One was plaid and one was Hawaiian print. We used the plaid at the hospital. It did cheer up the bedroom not to have the all white bedding at the hospital. His room is so clean now. I still have not brought his stuff back in. I need to tackle the game room with the piles of clothes and boxes of toys from Riley's room. My goal is tomorrow. We will be home and I can get it done. It needs a definite clean sweep approach.

I think I'll pick up some more plastic bins to get organized. I will need one for Riley's records anyway. The hospital statements have started to arrive in the mail. "We have billed your insurance company". Worth every penny, insurance. $2500 here, another for $6000. The prescription co pays have been $35 for one drug, for a one week supply.I think we will use up our flexible spending this year. So I am going to get a plastic bin to hold all the information in one place. Taxes might be tricky next year.

Speaking of taxes, I need to make a new appointment to get the taxes done on my dad's estate. I had to postpone during this crisis. But I have to get that estate closed. All I can say is it was a good thing I did all the distributions last summer so no one is still waiting for anything big. The lawyers said to wait, but my gut had told me to get it done. It has turned out to be a good call.
I'll ad it to my to do list for this week. I have everything we need now.

Its eight. Time to call the clinic for today's appointment.