Monday, September 8, 2008

The new normal?

It's funny how things end up being normal. They aren't the same as they used to be, they may not even be "right", but if it stays the same long enough we accept. We adapt, we move on.

TJ is still doing really well. His LFT's are still high, but funny, I'm not even alarmed anymore. The nurse gives me the blood results and I'm like yeah, yeah, yeah, they've been that high for a month. Whatever.

WHATEVER!!!???!!! Is that really my thought. Yes. Yes, it is really my thought. A month ago I was freaking out, now it's just normal. It amazes how messed up our blood work and tests can be but yet, we feel fine and would never know something was off.

We are having more blood work. Every 3 - 4 days we have to go in and stuck for a vial or 2 of blood. His immuno-suppressant level is off. I think because he's grown so much and because his belly is getting better. Having diarrhea will cause this level to go up, his diarrhea is finally easing up and going away. I think that's causing it to drop.

So in at 8 AM for blood work, TJ LOVES that! Not! I'm hoping the increases they're making in his dose will bring it enough and stabilize so we can go back to just once a week and then maybe back to the 3 weeks. That was nice, I felt like a regular person with a regular kid when we were doing that.

We had a GREAT Weekend, I mean great. TJ's uncle put together a huge fundraiser up in Erie Pa. It was a casino night, black jack, roulette, scratch tickets, Chinese auction... Lots of fun. They talked to a local Band - The M-80's, and they volunteered to play for the event.

Well, not only did The M-80's play, they were pushing the event at all their other gigs. They also were taking up a collection at these other gigs too. The band presented us with a big check, literally a big cardboard check at the beginning of the night and had 2 TV crews there too.

TJ made himself right at home with these men and it warmed my heart to see them taking him under their wings and giving him the time of his life. What would be the time of his life?

He lived it up like a Rock Star!

The band let him up on the stage with them and allowed him to play their instruments with them. It was so good to see TJ doing all of this and enjoying himself so much. I can tell you I now have a very soft spot for those men, they gave TJ a night we never could.

He loved the Drums the most, but took a turn on the guitars and piano too. The piano were 2 stacked keyboards and I'm proud to say he took a second spin on them. He had a really good time and the crowd loved it. I don't know how many pictures of my child are now out there in the world, but I can tell you as he was at the mike and guitars the phones were open and everyone was a clicking.

Drums, that's just what I as a classical pianist wanted my child to take up! *Snort*
Of course this is where the Drum Major in me kicks in and is hooting, Drum Cadences RULE!


Starunner said...

Maybe he could be a drum playing pianist?

Lori said...

I actually think drums are really cool.

He doesn't have good piano hands, so I don't have a lot of hope that he'll follow me anyways!

But we will hold off on that drum set for a while:)