- Cardiology-It's been about two weeks now since Drew has been taking lasix and aldactone only once a day. He seems to be doing well on this regimen. Dr. Parrish says he'd like to continue treating him this way for another month before we try to wean him again.
- Immunology-We made the trek out to UCSF two weeks ago for Drew's immunology appointment. I called last week to get the results of his labs and his CD3s (T cells) are 40%. While this is still nowhere near normal (which is what they told us at Stanford) this is the highest they've ever been. Yay! Still, no live virus vaccines until they are above 50%.
- Bills-We're getting more and more of them. We've now paid our $3500 maximum and just got another bill from Stanford for another $3500. I'm gathering my energy to start making phone calls to the insurance company this week. I dread it!
- Swimming-Drew finished his first two-week session of swimming lessons last week. He really made a lot of progress and even though I thought he probably wouldn't be swimming on his own until next year, now I think he just might pick it up before the summer is over. So I signed him up for a second session. Ava is taking a temporary hiatus from swimming lessons, but loves putting her face in the water and blowing bubbles and jumping into the pool, as long as it's her idea. She's killing me! I even got a comment from another parent today about how "comfortable" she is in the water. Argh! If only she'd take a little instruction from somebody!
- Biking-Dan and I were able to ride in the Tour of Napa Valley this weekend, thanks to Grandma Kathy coming over to stay with the kids. We went up with friends on Saturday and enjoyed winetasting and a gourmet picnic lunch. We stayed at the lovely Chateau and got up early to ride the next morning. Dan successfully completed his second century and I enjoyed a more leisurely 30 mile ride. We were riding among the grapevines in beautiful 70 degree weather and it was awesome!
No post would be complete without me talking about my feelings and how I cry ALL the time! OK, maybe not all the time, but it sure seems to be frequent lately. For example, when I went to visit little Arianna in the hospital last week all I had to do was walk into her room before the tears started flowing. That can't be super helpful to her parents. Now, since I have organized the raffle to help her family with their expenses I am in tears nearly every time I check my email. But it's the good kind of tears! I'm overwhelmed by how many people are reaching out to this family. Almost every time I check my inbox there is someone--a coworker of her Dad's, someone who reads this blog, one of her nurses, a friend of her aunt's--writing to say they want to support the Torrentes. I am glad I am able to help coordinate the efforts of so many people who want to help, but just didn't know how until now.
Some favorite photos from the past week or so:
Dan nearly broke his toe when he dropped a cutting board on it. I got him ice and a beer to make him feel better, but Ava thought he needed her blanket!
Visiting my friend, Dee, and her sweet little baby, Calista, who are finally home after being in the special care nursery for over a week