Bella’s Week

Bella is getting happier and happier every day!  We are loving it!  She is laughing and singing.  She is doing awesome!  I looked at a picture of our family last Thanksgiving and she was still totally on the vent.  I would never have guessed she could be here today!  So exciting!

We got to meet Sarah and Joyce Ely!  We were thrilled.  They were down here for a quilt show and they had lunch with us.  So exciting!  Sarah is going to be a great Aunt one day.  Not only did we have Bella with us, but also Joy and Alex.  Sarah was so patient with the girls – especially Bella.  Bella likes to touch faces.  I lost count how many times Sarah told her, “Don’t touch my face please.”  It was wonderful to finally meet them in person!

oh this picture…Bella had just finished watching Miss Rachel from Signing Time singing the wash hands song, so she was washing her hands in the dog’s water bowl (ick, yuck), but she was saying over and over again, “happy, happy, happy.”  Sweet girl.  I’m so glad she is happy and so glad she can tell me she’s happy!

Bella’s Week

Bella is doing awesome!  I am so pleased! 

Playing outside                               Hugging her brother – she adores Alex!

Music therapy – so very much fun!

Sister was rolling around on the floor, so Bella started copying her – loved it!  Love that she is free from cords and knows it!

Her teacher has started making crafts with Bella.  Bella is fine with that, but notice where her hands are – she is sitting on them!   She still has her sensory issues.  Time.  Time heals all.

Because she is cute! 

Our nursing hours reduction has started.  Other than her g-tube and meds, she has no need for constant nursing, so the reduction begins.  It’s exciting and scary.  I’m thrilled that she is doing awesome!  We worry a little about getting through the winter and RSV season.  And it’s hard to say good-bye to these women who have been in our lives for almost four years.  They have become like family.  Probably my closest friends are her nurses and therapists.

Bella’s Trip to the Smokey Mountain/Blue Ridge Parkway

For our 20th Wedding Anniversary, Jason and I decided to go on vacation.  But I couldn’t leave Bella.  I was just too worried.  And then she was decannulated and I couldn’t leave her.  And then Brother had to have emergency brain surgery, and I couldn’t leave him.  So in the end, Alex and Bella went with us to the Great Smoky Mountains and the Blue Ridge Parkway.

So many firsts for this little one – eating out in public, going everywhere, going hiking, being normal.

Driving and driving and driving

Staying in hotels

 

Most of the hotels were great – one gave us a nonsmoking room that smelled otherwise.  Just setting down our luggage and putting her down on the bed started an asthma attack.  We had to get another room, but that was the only night she needed oxygen on our whole trip.

Just as a side note, what is up with all of the smokers?  I was constantly on high alert everywhere we went for smokers.  Bella just can’t be around them. 

I did learn some of her triggers on this trip.  Obviously, cigarette smoke, but also if she really gets herself worked up that’ll start an attack.  Good things to know.

 

 

Stopping at rest stops

Seeing her first fire – it was gas and completely enclosed so there was no smoke

First trip to Wal-Mart

Playing on the patio

Hiking with Mama

Restaurants – so confusing to people why we wouldn’t order her any food or drink.  The poor waitress that told me, “There is a cord hanging from your baby.”  “Yes, there is.” I replied. She was often having her tube feedings while we were eating.  People would stare.  Oh well, Bella is really good about staring back!

Laughing and staring at people

Breaks from our drives

Feeding Mama

Random toys – pill crushers and kleenex

NC Arboretum

Sensory issues – I will NOT touch that grass no matter how soft you say it is!

Just being on vacation

Making our own fun with left over formula containers and her brother

Walking with Mama

At our picnic

The four of us