Bella’s Week

Monday we spent at TCH.  We got our last synagis shot.  I am so grateful for those.  I worry a little less.  We saw GI and we changed her GJ out for a new one.  She hated the change.  No one touches her button, no one.  It wasn’t a good experience, but it’s done for another three to four months.  GI was a good visit.  We really want to see if we can start working toward getting away from continuous feeds.  So she changed her day time feeds to G rather than J – be still my heart.  If she can tolerate it, we see if we can’t stretch that little tummy out and start working towards bolus.  Again be still my heart.  Since aspirate pneumonia about killed her in 2008.  But she is not the same child she was then.  She is strong and she wants so badly to be free from all of her tubes.  We’ll see.  It would be wonderful!

Whenever she is feeling up to it, this is where she wants to be – outside swinging!

I got Bella two new Signing Time DVDs – she adores Miss Rachel.  Checking them out, “look Mom!”

Sweet girl just doesn’t do well with the pollen.  I had been waiting for it to happen and hoping I was just crazy, but she has been re-introduced to her friend the concentrator.  Sigh.  I’m so grateful for the vent and oxygen.  Where would my sweet girl be without them?

On a good note, she does do better after she’s had a chance to wake up and clear (well some what) her lungs of all of that garbage.  She loves to play in her hair bows lately!  See how she has herself so tangled up in all of those cords?  Her circuit is literally all the way around her.  Sweet, crazy girl!