Bella’s Life

Bella is doing so well!  School has started for her again.  Twice a week her teacher comes out here.  She was amazed at how much Bella has grown and how much she is trying to talk!

She is doing well with her trach trials at night.  We gave it a break – no night nurse for six nights in a row.  I was exhausted, so she was on C-PAP every night.  But with the return of our night nurse two nights again, our humidified trach trials have resumed.   The last couple of nights she has needed oxygen, but no vent!  It is happening!  She had her nursing re-eval.  She expressed horror at the idea of decannulating as school and RSV and flu season are starting.  We’ll see.  But she is also submitting for 20 hours less a week.  Ouch – our first ever cut, but she is getting better.  She isn’t in her room every second of every day.  She is growing and doing better.

I was reminded at how little life experience she has actually had this week.  I gave her a bath – her third of her life.  I got in with her to keep her safe…and I was reminded that she has never seen a naked person before.  Something I hadn’t thought about.  All of the people in her life are clothed, all the time.  So she was a bit surprised by my anatomy.  It’s little things like that that remind me of what a sheltered life this little one has led. 

I had Joy’s ARD this week and I used the opportunity to ask questions about Bella.  Bella’s life is changing…fast.  Faster than my mind can keep up with.  After decannulation and RSV/flu season are over, I asked if we could start bringing Bella to school – just enough to get her feet wet.  Like 10 minutes a day, then as she adjusts to that, increase it by five or ten minutes a week.  I didn’t know if they would balk at that or what.  They were totally supportive!  Wahoo!  So excited to work with Joy’s new school which will be Bella’s school hopefully in the future. 

So much is going to change in Bella’s life in the next year.  From protected, isolated, medically fragile life to (hopefully) fully participating in school and family life.  It’s amazing and a true miracle!  And honestly, sometimes, I feel so guilty as I watch little ones fight the same fights as Bell and instead of coming home to their families they go home to their God.  Sometimes I wonder why she has been spared.  I don’t know the answer, but I am grateful.