Tuesday, September 28, 2010

A marathon day

After a sleepless night (we were watching Dora the Explorer at 3AM) we left the house at 6:45to go to Sloan Kettering for various tests.  Ty was such a trooper, but it wasn't easy.  He is very emotional, and being back at the hospital is so frightening for him.  Most of the tests were painless, but he's so apprehensive about being there and being unsure of what to expect that he was picking at his lips and whining all day. 

He had to get a new peripheral IV for the radioactive injection necessary for the kidney function test, which was what upset him the most today.  I told him how Spiderman also has radioactive blood and even though he didn't really get it, he still seemed to be excited about it.  In fact, he decided he wants Spiderman decorations for his birthday -- but still wants a Max and Ruby cake.  That makes for an interesting party theme mix. 

Ty has been doing really great with physical therapy to build back his strength.  He is still very weak, but he walks around more and more each day.  In fact, the first visit to the playground was very emotional for him.  He cried because he couldn't do much more than the swings.  But, Lou brought him back a couple of days ago and he had a great time!  He wore himself out climbing, sliding and walking around as much as possible.  He's really doing great. 

I mentioned how Ty has been so emotional lately.  It's very difficult to manage his rollercoaster attitude with patience, but we are doing the best we can.  We try to remember that he is not even three and he's just trying to show some authority over the few things he can control in his life (like, what he wants to eat or when he goes to bed) and we have to forgive how whiney, clingy and demanding he has been.  Today I lost my patience with him because he refused to take a bath, but then in between sobs he told me that he didn't want to get his belly tube wet and he just wants to be better and I realized that he is more aware of what's going on than we give him credit for.  He is our little fighter and he's going to beat this. 

1 comment:

  1. Hi Cindy- I just want you to know that I am thinking about you, and I have been following your blog every day. Thanks for keeping us all updated on Ty's progress. By the way- you are a fantastic writer!!! xoxo Kerrie Blumberg