Sometimes it strikes me….

This is our life.  It’s how we live.  It’s our normal.  Most of the time I don’t see the machines and the millions of forms.  They are just part of the background of the room.  But sometimes I look and see advanced life support in my living room and it hits me that this isn’t normal.  These are a blessing.  This beautiful child lives because of this machinery.  I am grateful for the technology and for her life.

Ojitos

(I think that’s how you spell it)

Our family is getting quite the cultural education.  We have many nurses – and they are from all over the globe.  It’s wonderful for our family. 

Right now Bella’s main day nurse is Hispanic.  She had taught Bella to do “ojitos.”  That translates to “little eyes.”  Basically when you say “ojitos” the baby blinks.  It’s so cute.  I absolutely love that she is learning things!  She is so smart!!

The sound makes no sense – the video is too short, but Bella is too cute!

Who is this kid?

I thought I knew who this child was – a sweet little girl with a quiet and content spirit.  Ah no…..  that would the little girl named Bella that was sick.  Almost two year old Bella is a totally different creature.  We have noticed the change.  Her nurses have noticed the change.  Her doctor has noticed the change.  She is getting healthy – her true personality is emerging.  She is happy.  She wants to play.   She can still get overwhelmed, but she wants to be where the action is.  She wants to be with her people.  She makes me laugh! And she is a huge Mama’s girl. 

Bella banging with spoons on a cookie sheet.  She was cleared to start working on crawling.  Lest this picture deceive you, she HATES this position.  As soon as she realizes what we were trying to do to her, she starts to squeak and squawk and shake her head no. Crazy, funny girl!

Doctor Day

We spent the day downtown at TCH. Our sweet love lost weight again. We meet the dietician again. We increased her feeds again. She had five needles shoved in her little body – flu shot, synagis, and attempts at blood work. She was hysterical. She was shaking her head no and desating. I would so love even one doctor to watch them try to take her blood – just one. It kills me, but they won’t OK a portacath. Anyway…came away with four new meds. Turns out she has had Rhinovirus. With it going on for over a month now, we are starting some Gent. We’ll see. She also changed up the allergy med – hoping that will help some. Her GJ stoma and trach stoma have been very red and sore for over a month as well. We tried one med last month. This month we are trying two different meds - Clindamycin and Triamcolone.

And….we got OK’d for a swallow study! Her OT is going to do flips!

Feeling junky, but having new experiences

Hanging out with her sister and cousin

Bella has a new PT.  She is working her so hard!  She wants us to work hard on getting her to keep her legs straight rather than like a frog all the time.  She says that when Bella lays open like that all the time, it shortens the outside muscles and lengthens the inside muscles.  Her poor kneecap is now up above her knee and on the side.   We're working on that now.

Bella wants to eat so badly – she isn’t cleared medically, but she wants to.  So we left her have a few drops of water, which she loves.  Today we let her play in jell-o.  The OT says it’s great for the tactical experience.  Lucky for us it totally disintegrates before she can get it to her mouth, but it does give her some taste on her fingers.  She loves it!

Another big girl experience – Developmental Services let her play in beans!  How exciting!  She loved putting her feet in those beans!

Watching the Texans win with Daddy!

Bella is such a puzzle right now.  When she feels well, she wants to play.  She wants to be in there with everyone, doing big girl things.  But when she isn’t feeling well, the littlest thing is just too much for her.  She goes from 3 1/2 liters of oxygen to off the vent in one day.  We just have to watch her and let her lead us.  Love ya big girl!

Cough, Cough, Sneeze, Sneeze, Wipe Nose, Repeat

Poor thing – it’s been over a month.  We are going to the doctor on Monday.  I’m hoping for some help for her.

Meanwhile, in keeping with the season, big sister and she had fun tonight with her hair.  Love ya babe!

Another Sweet Little Love

http://tare.dfps.state.tx.us/search/ChildDetail.jsp?TareId=59535

This sweet love reminds me in so many ways of my sweet Bella. 

Right now my family is set on adopting a boy – finally.  So she is not the little one we are looking for, but maybe someone else will look in those eyes and fall in love.  I hope.

Bella and her Daddy

Bella sparkles when she sees her Daddy.  Last night Jason said to her, “Bella, I wish I could share you with everyone.”  It made me smile, a sad smile, a thoughtful and grateful smile.  I am so glad that Bella is in our lives.  I love how she loves.  I wish she was well enough to leave this house, so everyone could see the amazing little person we have been blessed with.  We love you Bella!

Happy and Junky

Bella is such a funny little girl.  My camera flashes once and then takes the picture.  She has learned to smile whenever she sees that flash.  Makes me laugh. 

This poor kid.  She just can’t kick whatever this is.  I’m beginning to think it’s just allergies.  She is so junky that she has to be on the vent and requires oxygen support for most of the day.  We try to take her off daily.  We’ll wait till she has weaned from her oxygen and then let her heart settle down (so sometime in the afternoon) and then take her off.  She is lasting about half an hour before her coughing spells just won’t stop.  So we stick her back on.  Poor kid.  But as soon as she’s back on and she settles down, she is all smiles again.  Amazing kid!

Her ECI teacher said we have to come up with a transition goal since she is 23 months old.  Wow – that threw me for a loop.  Right now her goal is to continue her private therapies.  I’m not comfortable sending my vent dependent baby to public school.  So we’ll see what one year brings us.