I’m here! I’m here!

Sometimes I feel like:

• Some people see Bella and see a syndrome
• Some people see a medical record number

Sometimes I feel like Horton (from Horton Hears A Who).  Am I the only one that hears her yelling, “I’m here!  I’m here!”?

I comfort myself in knowing that she is a beautiful, alive, and vibrant soul.  Everyone who takes the time to know her, loves her.  Who wouldn’t?  She is my Bella and I love you babe.

Monday she had one of those icky viruses going around.  We didn’t even bother to dress her up, just new jammies.  She cried and cried.  I gave her this puzzle and snapped the picture and it was back to crying.  But by Friday she was her happy self again. 

 

We moved her bed so she can  look outside and get some vitamin D.  Of course in these pics, she is admiring herself in the mirror.  Can’t you just hear her say, “Yes?!?!” in the first one? 

Playing in therapy.  I was blown away that she even tried to do these pegs in a bottle.  And we took her outside – beautiful outside.  The girl loves to swing!

Reading with Sissy

We went to a post op with ENT this week.  And I spoke with the director of outpatient services.  Sorry, but if my child’s wheelchair doesn’t fit through your waiting room, then NO, you are not handicap accessible.  He assured me that would be looked at and fixed.  Sigh.  At a children’s hospital?  New campus. Not a good excuse.  Anyway, ears look good.  Wants an ABR.  Oh, and she lost weight again.  Another sigh.  But meanwhile she is beautiful and we love her.

Good things are happening around here

Bella is doing really well.  She is back on her antibiotics which is helping her secretions, which means she feels better.  We went to see the orthopedic doctor this week – not such a good experience.  New facility, people still learning what they are doing, but very obvious to me that they are not used to kiddos like Bella.  OK, I’m alright with that.  But I’m not alright with doctors that aren’t OK with kids like Bella.  Anyway, we’ll be finding a new ortho, PT suggested we just go to a PMandR doctor.  We may try that.  Long and short of it, her left leg is shorter than the right one.  We ordered lifts for her shoes.  And he has no idea why she won’t bear weight on that right leg.  The fact that her knee is swollen chronically, that her patella is floating around her leg, and that her lower leg is torqued in a funny angle, not a concern to him.  She’s not developmentally ready to stand anyway, he says.  Hmm…and how did he determine that one?  By glancing at her on the vent in her wheelchair.  Ahhh…  well, this Mama believes in her baby and only wants doctors on her team that also believe in Bella.  We’ll figure this out Bell.

Meanwhile, she is adorable as ever.  Trying to learn to chew, using her stander, and having crazy hair after leaving it in braids over night.

Her OT brought over this mat she found at Lowe’s.  It’s great.  She can sit up all by herself (!!!!) and we aren’t as worried about when she does tip over.  She is loving being on the floor and playing!

Happy Girl

Who needs toys when you’ve got alcohol prep pads to play with?  She is such a happy girl!

Green Beans…..yum, I think.

Headed downtown for her GI appointment where we finally got the official OK for daily food.  She also increased her feed rate again – they would really, really like her to find a curve, any curve on the growth chart.  She has also been breathing more on her own – thus using more calories.  Breathing is hard work after all.

 

 

Oh, Bella is doing the funniest thing.  She signs in her sleep.  I love it!

For fun:

Videos

Bella gets shy when we are talking about her.  You’ll see that.  She is tolerating her passy-muir  for a few minutes then she starts changing colors, so we enjoy it while we can.

She loves to rock!  No worries – I am right in front of her, Daddy is on one side and the nurse is on the other.  She was feeling really well that night   - she is all over the place. 

Eating, Jumping, and Being Two

Food is messy and sticky and she loves to explore it.  She will take somewhere from a teaspoon to a tablespoon of food in a day.  We are so thrilled.   Then she signs “done” and we clean up.  This is so exciting for us!!

The Johnny Jump Up – amazing things you can do when your baby isn’t tethered to a vent!  She will use her left leg to go around and she likes the swinging.  Developmental Services was showing her how to tear paper – she got that one quickly.  LOL.

And the sign for music.

Since her tubes, she has started to sign.  Her therapist and I have started calling her Bella 2.0.  Who is this amazing, beautiful child?  She is blowing me away!  She has learned almost ten signs in the last 3 weeks.  Good for you Bella!

 

 

 

 She is two.  She explores – this is her trach.  Yes, she pulled it out.  She pulls on everything!  We are getting quite creative on how to keep those exploring fingers away from important things.  Sweet girl.  I am secretly happy – she is full of energy and zest – she is feeling well.  Yeah!    (No worries this was during trach care and it was very quickly put back in, but notice the lack of distress! )

We saw pulmonology this week.  He loves that she is doing so well right now.  Is it the bronch that cleaned out her lungs?  Is it the cyclical antibiotics?  Whatever it is, everyone is happy.  He has grand plans for our sweet girl that involve our tracheal malaysia and chronic lung disease and pulmonary hypertension all behaving and giving this girl a more normal life.  As I say, we’ll see.  Bella writes her own book.  We just get to come along and enjoy the journey.

A Great Week!

This little girl is doing fantastic!  After the bronch, the doctors told me that they cleaned her out.  I’m ready to schedule them once a month!  This girl has been off the vent so much lately.  It’s been so wonderful!!!

Playing and playing and playing….my baby girl playing with others – I never would have thought it possible!

She has been so very happy!

We had to pop downtown for her synergis shot and some labs.  Sounds simple, why does it have to take hours and hours.  Oh well.  One of the attendings stopped us in the hallway – just to check on us.  RSV is really bad right now, she said.  So grateful that she’s getting these synergis shots this year.  So grateful she is doing so very well!