Bella’s Week

Therapy shots:

This is amazing – she has never sat up on a stool before – ever!  She would panic and freak unless she could feel our arms holding her tightly, but look!  It just all clicked!  Not just sitting there, but reaching and coming back to the upright position.  Wow, girl!

Using the stethoscope.  I think I can do that!  Thanks so much!

Cute video of Bella and her sister

Silly video of Bella

OK – that was all the happy stuff.  Feel free to stop reading now. 

Warning: whine ahead.  You have been warned.

During Speech, we feed her some Stage 2 Corn and Rice, and then suctioned some of it out of her trach.  Great!  Combine that with the fact that we can’t get liquids thick enough to not aspirate on and her Budda belly and her toxic gas and I have made the royal decision to make our beautiful girl NPO for a month.  I figure if it’s Celiac acting up that in one month’s time everything should have cleared out of her system and we’ll know.  I’m hoping it helps her poor tummy.  All of this gas and bloating isn’t normal.  All that won’t help her aspirating, but it’ll help.  Aspirating is dangerous.  We’ll see.

I’m going crazy – slowly, but surely.

Two years ago we left the hospital, went for our first ambulance ride, and came home.

 

 

I was so excited, but I struggled.  I struggled with having strangers in my home.  Reality is I still struggle with strangers in my home.  I was grateful to read this post.  It’s wonderful therapy to know you’re not alone. 

I feel so guilty.  I am so grateful for our nurses (well, most of them).  Truly.   Some are like family.   And Bella is beautiful.  We adore her.  But she is intense.  She needs a lot of time and attention.  Her care is extensive.  My other children would have no life if the nurses were suddenly gone.  But you see, on the inside of me is a very introverted people – hermit might even be a good word.  Having someone in my home, there is no where to go to escape.  There are days I spend a lot of time in my bathroom.  I feel guilty because on the days I’m not too fond of the nurse, I don’t spend as much time with Bella.  I have to force myself to interact with her because I also have to interact with the nurse.  I have constantly supervised visits with my own child.  I have to follow the nurse’s plan of care versus just doing what my mother’s intuition says (most of the time – I do make exceptions – but that means I have to be ready for a battle, so I pick my battles.)  It’s been two years.  Two very long years.  Every time this discomfort hits, a small piece of my heart dies.  And right at this second, my heart hurts.

On the other hand, what do I expect?  These nurses come and work in my home for twelve hours straight.  They aren’t robots.  They need human interaction too.  Really, I’m just struggling with a couple of nurses.  But I feel trapped.  How do you ask someone to please not come back because they stress you out?  This is their job.  This is how they pay their bills.  And they are people.  They have feelings.  They have hearts too.  How do I balance all of this?

Then there are people who have no nursing.  And I feel guilty for complaining.  (Sorry Lacey!)

Then there is hope.  Hope that Bella will get better.  Hope that she will be able to be a bigger part of the family – instead of just the sweetheart that we all adore, but who can only come into the living room for short periods of time each day.  Hope that she will one day be able to tolerate stimulation so she can be with us for longer.  Hope that she will be able to breathe without a machine or eat without a machine.  Hope that we can be more normal – and not have nurses.  But two years later and we are still here – breathing almost 24/7 through a machine with 155 hours of nursing a week.

What a hypocrite I am!  We have a living, breathing (albeit through a machine), beautiful little girl.  She is charming and beautiful.  She has the cutest sense of humor.  She needs help living and we are blessed with 155 hours of help a week.  My personal problems just have to be dealt with.  For she is Bella and we love her.

My beautiful happy girl!