Missing: One Groove.

Simon and Dr. Quinones. He is the doctor who let one of his patients paint his nails. We love this guy!

Today I am having one of "those" days. I just can't seem to find my groove. From the time I got up this morning, all I have wanted to do was crawl back into bed. I am feeling tired and beaten down.

Last week-end at home was wonderful, but it was also a reminder of how much needs to be done at the house to make it a safe environment for Simon. Before we came up to Denver last May, I spent close to an entire week tackling Simon's room. I de-cluttered, removed things that didn't belong in his room, bleached all his legos and other bleachable toys, and did a heavy duty clean. I also super cleaned the kitchen. All the cabinets were wiped down, inside and out, pantry, food cupboards, and spices shelves were sorted, wiped down, and organized.

After 8 months away from home, Simon's room is still in good shape. The kitchen is ready to be super cleaned again, as well as the rest of the house. I started tackling the master bedroom last week-end, but left it looking like it had been hit by a hurricane. At the time, I had every intention of returning to the job this week-end, but circumstances are going to prevent that from happening.

Yesterday, we spent were at the clinic from 8:30 until about 12:30. The news was mostly good. Simon's adenvirus is gone, which means that yesterday was his last round of Cidofovir. His counts are all holding steady. His steroids were reduced, and the doctor plans to do away with them all together next week. Simon's blood pressure was high, as I suspected, so he is back on his bp pills twice a day. (Last week, he had the doctor I shall call Dr. Optimistic. Really nice, but moves way too fast, given Simon's history.)

Simon has been fighting a para-flu virus for about 3 week now. That fact that it hasn't landed him in the hospital is a huge milestone. His lungs are sounding clear, which is one of the big concerns. Although his symptoms aren't getting worse, they also aren't getting better. Runny nose, cough, general malaise. Yesterday morning, he ate a big breakfast, but hasn't eaten much since. He says he just isn't hungry, which is so not like Simon! He has been flirting with a fever all day. His t-max so far has been 99.7. If he hits 101, he will be back in the hospital.

Because of Simon's health, and a bit of snow predicted for tomorrow, we will be staying in Denver this week-end. Simon isn't up for the drive home, and I am more comfortable being 5 minutes from the hospital with him feeling so lousy.

I guess you could say that I am feeling overwhelmed. Overwhelmed by the past 8 months, and the 2 and a half years leading up to his transplant. Overwhelmed by the future, and all that needs to happen as we move forward. Overwhelmed by the here and now. Will we be heading into the ER tonight, or will Simon be able to make it through January without a hospital stay? August and September are the only months, since May, that he hasn't had a stay.

Yesterday, I read an article about the benefits of music. Music can keep us in the present moment. I am once again a renter of a beautiful viola. When I feel like I am drowning in my circumstances, my viola becomes my life raft. I can lose myself in the music, and I always end up feeling better. What are some other ways to stay in the moment, rather than getting lost in the past, or in worries of the future?