Slowly, but surely

She’s getting better.  We are trying a hour off the vent a day again.   She’ll bounce  back.

Does it ever end?

Really, where does it all come from?  I am referring, of course, to the great quantities of mucus a human can produce.  It blows the mind. Poor thing has the same viral thing as the rest of us.  So she is achy, cold, congested, has a runny nose, is vomiting mucus, has loose stools – the works.  She is mad that she can’t be off the vent.  She is mad that she can’t play with the girls.  I love that she is feisty!  This tells me that she is sick just like the rest of us – not sick like it’s PICU time – yeah for feisty.  But I would sure love to know where the off switch is for that mucus!  :)

Growing and Playing

“Helping” Sammi with her school project.  I love this shot of her.  Yes, that is her HME.  She loves to pull it off and play with it.  Crazy girl!  I love the spunk in those eyes!

This was a great time!  Bella playing with her sisters – in their room.  Happy times!

Then the final picture – Bella was in with us during Speech for Joy.  Joy insisted that we include Bella in “Ring A Round A Rosie”  Too cute!

More Pictures

Sweet, crazy girl.  Bella is growing and changing and having so much fun lately.  I am so glad.  We took her to the doctor today.  The doctor was thrilled by her obvious personality oozing from her body.  She also ordered a bunch of tests to try to determine the green guck flowing out of her trach and her increased oxygen needs.  I’m hoping it’s something short.  Speaking of short, the little stinker just won’t grow.  She lost weight this last month and still hasn’t grown in length.  Another visit with the dietician.  The dietician said at least we aren’t outgrowing clothes and having to buy new ones!  We love ya Bella!  Good things come in small packages.  :)

Look at me! Count me in!

Look at this kid.  In the last two weeks she has undergone a transformation.  She has grown up!  She is no longer content to be in bed or in her room or to be a baby.  She is almost two and she is determined to prove it.  She will tell me and her nurses “No!” by shaking her head back and forth with great enthusiasm – but she strangely doesn’t understand that same “no” when we tell her not to pull hair.  :)  Ornery kid! 

We went down to the beach for my sister’s birthday – and we brought Bella.  She did really well.  She needed some oxygen during her nap which she hasn’t needed in a while and she has a slight temp this AM – but she went.  She saw.  She lived!                      Can’t you just hear her thinking what is this stuff in the second picture?  She was only out in the sun for a little while.  That skin is not used to the sun, especially the Gulf Coast sun!

   

Playing with her cousin and getting ready for an IPV treatment – didn’t know that one was being taken.  :)

This is so exciting!  She is growing up and becoming a person, not just a sweet little baby that I have to fight to keep alive.  I am actually having a hard time wrapping my head around discipline for Bella and planning for the future.  As one of her therapists said, “You haven’t allowed yourself to go there, have you?”  Um…no.  I still find myself liking a song on the radio and thinking, “That would be perfect for Bella’s funeral.”  I think Bella wants to stick around.  I don’t think I’ve given her enough credit.  She is here to stay, she says, and I had just better get used to it!  :)

So fun!

Feeling good and playing with my people

She’s doing great!  She wants to be with her people.  Love it!

Crazy Times

In so many ways Bella is doing fabulously!  She is having her short periods off the vent, so we are able to try new things.  Her OT has been dying to get her into the swing.  We were able to on Tuesday – and she LOVED it!  I had been promising her for over a year that if she would get off the vent, I would get her a baby sling so I could carry her around with me.  She liked that too.  (YEAH for all the good!!!  Yeah, Yeah and Double Yeah!)

But she can’t seem to get her labs figured out.  Monday labs again, Tuesday the frantic call from the doc again, Wednesday more labs.  Those kidneys are not happy with us right now.  But she looks great!  We love you little one!