Bella’s Week

 

That face about sums it up.  She is sick and less than thrilled.  Every therapy was cancelled this week.  I did allow music therapy – her favorite half hour of the week – and this is her face.

 

It’s one of those weeks that drives me crazy and makes me grateful.  The nurses and I would stand there and discuss what to do.  She is sick enough for the ER.  But what can they do that we aren’t doing?  We opted to keep her home.  CPT almost constantly.  Breathing treatment after breathing treatment after breathing treatment.  Pedialyte for low BP and fever.  Back to formula.  Vomiting because there is just too much junk.  Blood because there is so much irritation.  Just a long, tiring week.  Grateful she stayed on the line and didn’t tip over.

I am amazed with her.  Jason told me this morning, “She is the most amazing person I have ever meet.”  She is.  She just lives and fights and wakes up and does it again tomorrow.  I was comparing her to August 2009.  She has come so far!  We would not have been able to stay home back then!  You are doing it, Bella.  On your own time table, you are getting stronger and stronger and I for one am so very, very proud of you!

Bella’s Week

Bella loves to sit and play on this little piano.  PT loves it because the therapist comes from behind and makes Bella stand while she plays.   

Working some more on those stairs – she slides down on her belly so we have to fashion a blanket belt to hold that gj button in place.  That would hurt to pull it out!

Swinging with sister and out on a walk with Mama – Daddy calls her “the turtle” when she’s like this.

Music Therapy – still her favorite part of the week!

During school, she was supposed to be counting the trains, but she said, “choo, choo.”  I was thrilled!

It’s been one of those weeks where she is either great or horrible.  Hopefully the yucky weather is behind us and we are headed to lots more good days!

During PT…the PT is holding her feet and ankles, I’m trying to keep her upright, and Jessi was entertaining her.  She was being camera shy for the first half, but then she starts dancing!

Music Therapy

Bella’s Week

Daddy and Bella                                           Sisters playing

Music Therapy – the best half hour of the week

I pulled this off the shelf.  It’s been sitting there for a long time.  She has figured out how to make it sing to her.  She has her favorite songs that she will sign along to – and she is trying to finger spell her name along with the song.  Love it!

Working on that knee extension

Been very sad about the passing of Caleb.  Praying for his sweet family.  It has really affected me. 

Bella’s Week

Our nurse has bangs that are swept over to the side (reminds me of the skater cut when I was in high school).  She was so delighted that she got Bella’s hair to look like hers!                                         

 

 

 

 

 

She is just so cute!                                 Swinging with Lizzy

Delighted with herself – piano playing           Making mat man

Playing with sisters                                     Learning to go DOWN – not as fun!

PT brought over some e-stim to try out on her leg.  That right leg can’t kick.  We thought we would try it and see.  I asked them to do it to me first, and no, Bella won’t be using e-stim.  I did not like it.  How would she understand what we are doing to her?  And that poor thing has been electrocuted enough in her little life.  When you are sedated and paralyzed, nurses pass a current through your body.  If you respond, you aren’t deep enough.  I hated that!  Twice a day for way too long she was shocked and didn’t flinch.  So, no, we aren’t going to shock her little muscles now.  Mama has too much emotional baggage for that to be successful!

 

  We love you too Bella!

Phrases I have heard repeated this week, “She’s back!”  (so grateful!)   and “She’s feisty!”  Yes, she is!