my bad

Tonight was Ben's third swim lesson. Unfortunately I had it in my mind that it started at 6:30pm. At 6:29pm, when we parked and were scrambling to get out of the car, up walks Jeremy with a confused look on his face. (Jeremy buses in to work on T/Th, then walks to the pool and I take him to the park and ride after swim class.) He said he thought it started at 6pm. I said nooooo, it's 6:30....then checked my calendar. Oops. 6-6:30. I felt horrible. Ben was so looking forward to it! He's been doing so well. He's fully submerging his head now...


and loves his swim teacher, who is also named Ben.


This is the second day of Rapamycin for Alex. It's driving me insane not to be in charge of what is likely the most important medication he's ever been on. Are they being sure he gets all of it? Are they urging him to eat/drink after taking it? Are they giving it at the same time every night? This HAS to work. If it does not, he'll be having surgery...and sooner, rather than later, like we thought. I thought we were looking at a couple years down the road, but (makes sense when you think about it) they will want to go in and remove it before it starts causing problems...which would be within the year. Also, at this point...if it fails, we'll have to worry about putting him through a surgery after compromising his immune system. Ugh. Can't think about that. We just need this to work.

Here's a picture of Alex in the tub last night. This shows all the angiofibromas (on his cheek and bridge of nose) and the forehead plaque. The Rapamycin is supposed to shrink all tumors associated with TSC, so it'll be interesting to see what happens outwardly. I'll try to post a comparison shot in about a month.






By the way, in case you're wondering why I usually "fix" Alex's face in the pictures I share...it's because I very rarely ever notice the angios and forehead bump in real life. Then I'll take a picture and pull it up into Photoshop, and it is almost shocking to see all those little bumps. I'm not sure why, but freezing him in place in a picture makes them stand out way more to me, and so I work on the picture and make it look just how I see him. Or how I choose to see him? All I see when I look at my boy is that gorgeous smile and beautiful eyes. :)