Bella’s Week

sick.  still.  she’s slowly heading in the right direction.

I miss her trach?

Bell and I are in the hospital. I hate hospitals, but not as much as Bella does. She is still ticked about this IV and keeps showing it to me with an accusing glance. Yes, I was the one that had to lay on her while two nurses inserted the catheter. But that contempt pales in comparison to how she feels about the nasal cannula. She is very defensive of her body. I believe she has every right to be. The scars criss- crossing her tiny frame are one evidence of her reasons. You don't touch the g-tube. Don't lift her shirt or even think the thought. But she HATES anyone touching her face. Well, when you are stating in the seventies, medical personnel really think oxygenation is a higher priority. It astonishes me how often people tell me how strong Bella is. Why? Doesn't it take three grown adults to put a nasal cannula on an eleven kilo kid every day? Don't let her skinny little battle scarred body fool you. Inside beats the soul of a warrior who will fight viciously.
So as we plod through our fifth night with this crud, I am remembering fondly the days when turning up her oxygen was easy, when nebs just went inline, when peep could be adjusted with the turn of a dial.
Daddy told Bella when we headed to the hospital to remember that everyone was trying to help her. Poor thing. She just doesn't understand. Fight or flight. She chooses to fight.
Seriously, I am so proud of how far she has come, but it's harder to care for her in an acute setting this way.
Pneumonia vs Bella. I'll put my money on Bella, my fighter.

Bella’s Week

Took Brother to Baby Time at the library.  Bella was so cute watching everyone and taking it all in.

Love her expression in this picture.  Time to eat, again???

Music therapy

More therapy      and dancing with sister

Friday was Nurse Kristin’s last day with us.  She has been with us for a year and a half.  She is getting married and beginning a whole new life.  We wish her every happiness.  We will miss her!

Wearing their new shirts from Walt Disney World (sister brought them back)

Bella starts school TOMORROW – ugh!  I am freaking out!  She will be coming home on the bus, so transportation had to come and check her and her chair out.  At 26 lbs she will have to ride in a car seat.  I’m hoping it’s wonderful for her.  There is only six weeks of school left, so we’ll see how she does.  She’ll only go one to two days a week.  I’m hoping it’s AWESOME! (but I’m freaking out!)

Bella’s Week

Bella saw GI on Monday.  We are starting to intensely work on feeding!  So exciting!  Then as I was leaving TCH, her G button popped out for the millionth time (been happening a lot lately).  I looked and realized the balloon  has busted.  Two thoughts go through my head: 1. I’m here.  I could go down to the ER and get it replaced.  2. I have one at home.  I can use that one.  I listen to thought two and come home.  That is when I learned that for some crazy reason I had stored an empty box.  I did not in fact have a spare button.  Awesome!  I taped her busted button in place.  We went and picked up her sister from school and decided to try out the hospital in the Woodlands rather than drive all the way back downtown.  We made it home at 8PM with a new g-button.  Long day.

Bella in Dr Barlow’s office    Listening to Jessi’s music while waiting in the ER.

Poor Bell – she still gets upset so easily.  Sweet sister comforting her.

Music therapy – she’s rather flexible :)

Feeding started in earnest!  She no longer gets her 7AM feed, so after all night plus no 7AM feed, she should be good and hungry for breakfast.  Tuesday was a great eating day!  Breakfast – great!  Lunch – great!  Then feeds for 3 and 7PM.  Way to go Bella!!

Silly pictures of Bell

More therapies

Helping sister brush her hair   “Helping” sister with the computer

She doesn’t want to use her hands anymore.  We insisted and had many, many tantrums.  But her smile at the bottom of the slide was beautiful!

Spending time outside

Exploring – I just love watching her

This box – ha!  I find that I am buying some weird stuff.  Anything to get Bella to eat.  The girl loves to dip.  OK.  We’ll try fish sticks (ick, but if it’s a stepping stone, so be it).  I showed her the box.  I told her she could have one after we paid for it.  OK.  I got distracted with paying and bagging.  We get to the van and I started the seat belting process.  That is when I saw it.  Bella had found the box of frozen fish sticks.  With those tiny little fingers, she had worked it open and she was eating one.  She was half way through that frozen stick!  I didn’t know what to say, except to think that I had told her she could have one after we paid for them!  :)  Crazy, crazy girl!  Guess the feeding is going better than I expected!

Bella’s Week

 

I saw this shirt at Walgreen’s.  It so reminded me of Bella and her Grandpa’s relationship.  She just adores him.  She talks about him all the time.

 

 

 

 

An Easter picture – cute girl

Proof that she does eat sometimes – like everything else – when SHE wants to!  Ornery girl!

Helping me fold laundry

A rare picture of me holding my babies

A really bad picture of crazy Bella wearing her Daddy’s shoes

RSV season is pretty much over here in the Texas.  So I have contacted her school about starting to go to school (can you believe it???) one or two days a week.  Wow!  Who would have ever thought?  Such an exciting development for you little one.  I am so proud of you!

Bella’s Week

Music therapy – so cute – she held the bunny mask so she could see the picture.  No way was she going to put those little bunnies on her fingers but she was more than happy to put them back in the bag.  Really?  I have to dig for the eggs in that grass?

A little sensory work

I just loved this picture – it reminds me of an old picture of my Mom leaning against a car in that same pose.

Bella was very concerned about the girls jumping on the trampoline.  She was happy to be held to play “Duck, Duck, Goose.”

At the grocery store              Dancing in the car on the way to Brenham

Fireman’s park

My family

At the Blue Bell factory

At the tire park

At Grandma’s farm.  We went exploring across their 30 acres.  I carried Bella the whole way.

Easter morning

I told her to touch the egg.  So she touched it, but she didn’t grab it.  Silly girl.