Rainy Monday

Well today is definitely a good day for a nap and Porter is taking advantage of it.  He had a big morning with PT and OT and they are impressed with his developments.  Porter was able to bang two blocks together and hit a toy against another one on his play mat.  These may seem like small things in general but they are huge for Porter.  

A volunteer came in over the weekend and played some music on his guitar which Porter absolutely LOVED.  He really seems to enjoy music and books.  He's totally a flirt with all the nurses and they love it.  It makes me feel good in the morning when I come in and they tell me they've been in checking on him and talking with him and he's all smiles.  His nurse today came in and said "Porter, how is it that you're the sickest patient I have and yet you're the happiest".  In his mind I'm sure he was thinking~ "cause that's how I roll".  He truly does just seem to have a happy go lucky, roll with the punches personality.  

It finally seems like everyone is on the same page with letting Porter coast until he gets his transplant.  A new set of Drs started this week and I was happy to hear that they didn't want to try to change anything.  

The waiting for that phone call that a heart is available is so difficult.  Steve and I both wake up almost in a panic wondering if we've missed the call.  I don't think either one of us is really sleeping, hopefully the wait won't be too much longer.  In the meantime, Porter is growing ~ finally~ and making strides with his development so that makes us happy. 

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