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.
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!
We wait and we wait and we wait and we wait. So grateful we have the ipad!
Since we haven’t seen any evidence of major refluxing lately, I asked if we could try to do g feeds at night (instead of j). She was fine with that. This would be huge! And so far, so good. Wahoo babe!
After lunch, over to interventional radiology for a new GJ (wouldn’t it be wonderful if we never have to get a new one again!!!????!!?) where we wait and wait and wait and wait. An hour each place. So fun!
This time we played with stickers. They give us two sheets of ID stickers for her paperwork and we never use them, so I always use them to entertain Bella. We put them on her hands and arms. This time the nurse put them on Bella’s face. We were very bored and had way too much fun!
Swinging…the most fun on the planet!!
A side trip to the ER. She was satting 87-90 on 3.5 liters of oxygen, heart rate was in the 150s and respirations were 60s to 80s. When we couldn’t get all that to calm down, we decided to spend the day at the ER. Negative for RSV and flu. X-ray was unchanged for her. So we asked to go home. The consensus was that she’s been off the vent too much and she just crashed. Pulmonology called the next day. “Saw you were here.” “Yep.” “Well, after she gets better, start weaning her again,” was their compassionate response. Yeah, about that. I’ve decided. No more following their instructions (if her stats are good, keep her off). I’m listening to my mother’s instinct that says this girl is a fighter. She’ll push herself till she crashes. Slowly, slowly, slowly. We will limit the time off and just move slowly forward.
Later in the week….after much sleeping and oxygen…..
Mechanical Soft! We decided to take it up a notch with Bella. She tried scrambled eggs, finely chopped. She didn’t chew, but she did move the food around in her mouth very well. Clap for me – I’m awesome!
Playing around in therapy!
Outside on the trampoline – she LOVES it!
Things are going pretty well. She continues to have these random periods of tachycardia and irritability. But other than that, she is doing great!
She adores Music Therapy – tons of pictures, how do I choose which to include – she is so cute!
OT – working sensory. After thirty minutes, she actually touched the paint!!
Playing around before bed
Saturday the girls went for a bike ride and came home with some friends. I love that the first thing they do is introduce their friends to Bella and Joy. And I love that their friends play with my babies!
Jessi teaching her friend how to sign “apple.” Playing outside
Bella is such a stinker! We tried this once in PT. She fought and fought. You would have thought we were killing her. Then on Sunday, while she was conveniently off of all wires, I left her in the Living Room for one moment to grab something in the kitchen. I walked back into the room and looked around. Where is Bella? We found her on the stairs climbing up like she had done this every day for a month! So now PT has a new goal – teach her to go DOWN the stairs!
Funny, funny girl! (I am so proud of you!!!)
Music Therapy – Bella loves it! She loves the instruments!
PT – she still hasn’t been feeling well. So we kept it low key. Lots of stretching for that stubborn patella that doesn’t want to be in the right place! Yes, it left bruises, BUT she was able to fully extend that leg with it in place!
Group therapy with Joy - Joy is a good model for finger-painting! Fun for Joy. Too gross for Bella!
After Jessi’s 5th Grade Concert, she gave Bella and the nurse a concert. Bella being pushed around for her stander time – more fun that way!
Outside play – Bella LOVES to be outside. She begs all day. She throws huge three year old fits when she comes in.
Playing with Joy – she loves this toy. I wish it didn’t eat up batteries so fast!
