The Rest of Bell’s Week

Thanksgiving, when you don’t eat by mouth, isn’t that thrilling.  But the family – that part is fabulous!

She loved her cousin Michael!

Grandma and Becca holding time was great!

She is feeling better!  Her playful cuteness is back!

Japanese Gardens

After Bella’s appointments at the hospital, everyone meet us down at the Japanese Gardens.   We had a picnic and took pictures.  I foolishly left all the vent batteries at home.  Luckily there was an outlet next to the bathroom, so while everyone enjoyed their lunch, Bella and I “re-charged our batteries!”   After an hour we had enough juice to take some pictures with Bella.  When we got to the van, the vent started beeping, “Batt empty.”  We consider ourselves to be very blessed.

 

 

Pulmonology Visit

Home from pulmonology. Doctor doesn't know why she is still on the vent. He admits that she does her own thing and doesn't follow the rules. She should be better. She should be off the vent by now. Is this a PEEP thing? Or are her lungs just really that damaged? We are going to wait till January (thank you my family says) and admitted her for a bit. We'll do a bronch and some tests. He'll go back and scour her medical file. Maybe, just maybe we can figure something out. Hoping!

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!

Tis the Season

that I am grateful for:

• Xopenex
• Inhaled Steriods
• Oxygen Concentrators
• Night nurses
• Ventilators
• CPT

The weather is crazy, so it follows that Bella’s lungs are crazy.  Oh well.  Grateful we have all of these things to keep Bella home and OUT of the hospital.

Isn’t this fun?  It was a birthday present from Miss Kaci, her nurse.  Those are melted crayons.

Wonder of wonders!!!  PT caught her on a good day and look at the miracle!  With the PT and nurse following behind with all of the equipment and me out in front with the ipad showing Signing Time, Bella propelled her way three times around the house!!  It’s all about motivation.  It’s time for a gait trainer!  I am so proud!

A rare moment off the vent, grab the camera.  My two sweet sisters:

Monthly labs.  We brought along the ipad to keep us occupied. and distracted.

She was supposed to start her homebound school this week, but she had too many fevers, so we had to cancel.  Hoping this is a good week! (and that her teacher is nice and loves her!)

Happy 3rd Birthday Bella!

I’m still so very proud of each and every one of your birthdays!  You have amazed and inspired me for so long now, my love.  Happy birthday to our Bella!

We got her a phone – no phone line, but we’ll keep it charged.  Now she can text and talk, just like the nurses.  Hopefully, their phones will be safe now!

She and her sisters loved the ball house.

Gluten free brownies – for me?  Are you sure?  No flame on the candles, but we sure sang.  And then we gave her a piece  - and she licked it -  just like a lollipop.  Cute girl!  For someone who doesn’t eat, licking is good.

Aquadoodle

How we love you Bella!  You are beautiful and amazing.  I have been thinking of your birth family more than normal this week.  I hope they know you are loved and cherished beyond belief.  I love you big girl.