School, Vents, and the Beach

Bella’s first day of school!  Wow – it was intense!  Calendar, Alphabet (all 26 letters signed), colors, shapes, counting.  A solid hour of instruction.  I guess I had stressed enough that Bella uses a lot of sign to communicate because her teacher came in signing everything – and this amazing kid signed right back.  And with signs I didn’t even know she knew!

She was one tired girl when that hour was over (read, not breathing, just riding the vent).  But she rallied later in the afternoon, for a little swinging time!

Wednesday she had an eventful day.  PT came and after such a promising session last week, we all thought we’d repeat.  Ah, no.  Miss Kaci, our nurse, kept her on the vent all morning so she would be well rested and put her on the HME for therapy.  Bella just wasn’t ready, after a little bit she just stopped.  She just stood there in that walker breathing.  I was watching her so closely because she looked so different.  Then she asked me to put her back on the vent!  She put her little hand on her trach repeatedly.  I asked her, “Do you want to go on the vent?”  And she responded by patting her trach repeatedly again.  OK babe.  You call the shots.  Therapy was over and we rested.  That kinda freaked me out.  She has never asked to be put on the vent before.  She knows what she can and can’t do.  I just have to listen to her.

Grandma came by and bought her birthday present – two new Signing Time videos!  Thanks Grandma!

later on the girls were dancing.  Usually she wants to “dance” with them.  That night all she could do was watch.  But I did pick her and bounce with her a bit!

Bella was getting sick.  By Thursday night we knew.

That weekend was our Family Reunion at the Beach.  Oh the debates – to take her or not to take her.  Nursing had already been cancelled, so it was me at home alone with a sick Bella or take a sick Bella to the beach.  We ended up taking her.  She and I stayed in our room a lot of the time.  Her fever broke on Saturday.  We did a lot of suctioning thick green secretions and CPT in that rocking chair.  But I had a great view!

Saturday afternoon she got to go out into the living room and watch a movie with the cousins!

Lots of sleeping.                                   Look at the camera Bella!

Signing Time!                                       We quickly took her out for the family shot.  She was kinda purple, but she is in the picture!