Her Latest

Sorry this one is side ways – oops!

Bella the Beautiful

Bella wants to be mobile.  She is determined to figure out how to move.  It’s so fun to watch her become.  She has been on the vent more than off lately.   I have been wondering of late what we will be working with once she is off the vent for good.  What will she be like?  A really bad asthma little girl?  Will it slow down her development because she’ll have to spend so much effort and energy breathing?  I’m just worried.  I like where we are.  The future, being unknown, is still frightening to me.

Meanwhile, her PT said to get a walker (the play kind, not the gait trainer).  It gives her another position upright and where she can learn to move her feet and put weight on those little legs.  Enjoy!

Bella’s Week

Sweet Bella – ultrasound of her liver showed that it was enlarged.  That wasn’t very surprising.  It also showed that she has stones in her gallbladder.  Ran that by her PCP who told me that it was up to GI, but they probably won’t do anything about it unless it causes a problem. 

Had to stop in and see her PCP – we were not doing well and headed to sick.  So two meds later, we are seeing an improvement.  It has been really cold – and that wheezing.  Ick.  We got our hands on an inline passy-muir valve.  Her other passy-muir valve she has to be off the vent to use.  That just isn’t happening right now.  But this one you can use while using the vent.  Now that her antibiotics are kicking in her secretions are more manageable and she is able to use it!  She loves to make noise!  I about need a valium every time we use it, though.  But I am getting used to it and she is getting used to it. 

In other news, this kid is so excited to move!  She is learning to dance – her version, a little wiggling of the shoulders and sometimes the trunk.  So fun to watch!  And that mat is coming through again.  She is scooting – she is using momentum to scoot that little bottom across her mat to reach toys!  So thrilling to witness!

My beautiful, happy girl

Here’s to exploring and learning and developing every day!

Thankfully not much to write this week.  It’s been really cold, so we have had some lungs complaining.  But we have been home.  We have been warm.  And we are grateful!

Playing with sissy – always makes my heart happy!

This mat is magic!  She will put her hands down on it.  Implications……we are  starting to learn the beginning skills that will one day be crawling!  Yea for the magic mat!

 

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!

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