Personal Style

This is quintessential sleeping Jonah style - before his diagnosis he would frequently fall asleep with criss-cross applesauce legs and his head in his lap.  How that ever was comfortable is beyond me.  There was a lot of sweetness in seeing him do such a familiar weird thing.  I actually added the pillow in his lap because the position looks so uncomfortable to sleep in.

Jonah was testing out his personal style preference for how he would wear his new Northwestern hat. He tried all three positions and then decided that brim back is his favorite way.  I'm know I'm hugely bias, but I think he looks cute no matter how he wears his hat!

Another piece of Jonah's personal style is going to be a wheelchair.  He had his first wheelchair "seating" this week.  I have to be honest, I wanted to pretend that I forgot about the appointment and hide.  I'm not ready to think about Jonah needing his own wheelchair and all the implications that come with that.  His PT assured me that we're still working towards walking goals for Jonah, but she did try and help me understand that his walking will be slower and his stamina (at least in the near term) will be decreased.  The wheelchair will allow Jonah to have a level of independence in situations where we need to go a longer distance or a faster pace.  Jonah of course has maintained his happy-go-lucky disposition and is excited about his own wheelchair.  I'm trying to take my cues from him, as if he can be happy in a wheelchair, I can be happy standing next to him.

In terms of an update - we have yet to experience an uninterrupted between chemos time.  The Saturday after Thanksgiving, Jonah was rushed back to Lurie with a fever and what ended up being 3 different infections.  He was back for about a week and then was allowed to return to RIC on his birthday.  He is back at the hospital of his choosing and happy to be living the RIC life.  We expect that he'll go back to Lurie for round 5 sometime between the 28th-30th.  Although he will still require in-patient care, we are hoping to sneak out of RIC for some sort of TBD family Christmas.