Playing at a restaurant Sitting up at the table
Silly girl – she just won’t eat. Part of it is she won’t feed herself. Is that sensory? I don’t want my hands to get dirty? Or is she spoiled? Princess Bella doesn’t feed herself? She’ll take a few bites if you feed her but then she signs all done. Her Speech Therapist and I are 
banging our heads. She has all the skills now, just no desire. Fun.
Wednesday Bella and I headed down to pulmonology. It was a terrific visit. We are all so very pleased with how far this little one has come. Her doctor loves her so much. He always kisses her and loves on her. She had just had her ears checked in this picture and wasn’t having anything to do with any of the love at the moment! :)
This girl wants so badly to walk, to move. She will contort her body in a thousand crazy ways to make it support her and that crazy knee. When we were at Pulmonology this week we asked if they are done her clearances for her surgery. They had never gotten them. I called Scottish Rite. Come on people! No, they feel it’s more important for her to see a Developmental Pediatrician for a three hour workup before they will more forward. For a knee operation? What? So I would have to spend eight hours driving plus spend the night in a hotel so that . . what? What is the purpose of this assessment. No one has a straight answer, so I have made an appointment with an orthopedic surgeon here in town. Hoping he knows his stuff. This will be our fifth ortho. Please someone help my baby!
Trying out the big girl swing New hot pink braces!
Being a crazy girl!
At the park
She has been grumpy all week. Just off. Then after the park her stats were in the low 80s and she was super junky. Since decannulation she has refused to cough. We are constantly telling her to cough. She just won’t. A bunch of oxygen, some breathing treatments, CPT and some Brother cuddle time helped her a lot.
1 comment:
Wow, I am astounded at how far she has come since I first began reading your blog. You see her every day so maybe the changes don't seem as incredible but I am blown away at the difference between her being tethered by tubes and wires, mostly confined to her room, and now seeing her out to dinner, outside playing, determined to walk. You go girl!
Have you looked into group feeding therapy? Our rehab center has a "breakfast club" for kids. Positive peer pressure can do wonders. Kids always want what another kid has! And, Bella's little brother is adorable, I would love to hear more about him, does he have his own page?
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