Little Bella has captured the hearts of our family and everyone that meets her. We want to share her story with all.

Wednesday, April 28, 2021

Dual Diagnosis

 Yesterday, Bella and I spent two hours with a developmental pediatrician and a clinical psychologist.  They had interviewed me, reviewed information from her teacher, and they wanted to meet her in person.  (Our first appointment was on Zoom)  For two hours we talked about Bella's medical history and how she interacts with the world.

Bella lives in her own little world.  A happy world with Disney princesses, Polly Pocket, and Barbie.  It's how she dresses. It's how she entertains herself.  She doesn't watch movies - she acts them out - every word, motion, and emotion fully on display.

I have been asked several times, "Is Bella autistic?"

"No," I would reply.  "She's just had a lot of medical trauma and was forced to live in her head for years."  

A couple of teacher conferences ago (you know, when we actually used to have those in person), her teacher asked me, "Shelly, is Bella autistic?"  (This man has been her teacher for five years and knows her as well as I do!)  "No," I start my spiel....  "Shelly," he interrupted, "Is Bella autistic?"  Huge pause.  This man that knows Bella so well, and teaches autistic children all day asking me …We have to think about Junior High and High School.  When she has people around her that don't know her so well.  When schools would take away services. When my baby isn't sheltered.  Is she autistic?

So at her next well child check up we asked for a referral for testing.  We waited.  COVID came. 

And then the Zoom meeting, and then the in person...."Bella is a happy child.  You have done a good job making sure she has all of the services she needs. You can tell she is loved.  (Do they practice how to break bad news?)  We feel she qualifies for the definition of Autism Spectrum Disorder.  Now whether that was from birth or what she has experienced, we'll never know, but by definition, she qualifies for ASD."

We leave. And I try to keep my heart from breaking.

It changes nothing.  I didn't want another label.  But this has never been about me - it's about doing what's best for Miss Bella.  How I love that little Princess!! <3


Thursday, April 20, 2017

Orthopedic Appointment

Bella had her one year follow up after knee surgery – a year of walking and jumping – and now jumping!  Who would have thought?

Of course, the poor baby was terrified.  Despite all of my reassurances, she is sure they are going to hurt her.  It’s really quite sad.

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A bribe for Gigi’s cupcakes actually work!!  Usually you can promise her the moon, and she doesn’t care!  X-rays for a cupcake – win/win!

Her right knee is fantastic – granted the ugliest scar on the planet, but her knee is stable.

Her left leg, on the other hand, is knock kneed and her patella is “loosey goosey” (that is the technical medical term :) ).  So she continues in therapy and we continue to monitor that knee.  Doctor says if she has to mess with that left knee, she is not going to be a happy camper.

Look at this x-ray!  So proud of that straight leg!!!

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Her celebratory cupcake!

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Sunday, March 19, 2017

Bella Update

Bella is still super dramatic (where is the theater?), super cute, and super amazing!

She adores her niece Ellie.  We come up with all kinds of different ways to do her hair each morning, and usually by the end of the day, she has all of the bows and rubber bands out, leaving her long, thin hair in her face.

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She adores her sister Joy, unless she is annoyed with her sister Joy, then her claws come out.  Sound like sisters to anyone?

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She amazes me!

She loves her ballet / jazz class!!  She also loves her cupcake from Gigi’s afterwards!

She’s a ham!

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She is doing well at school.  She has the best teacher who pushes and pushes her.  I am so pleased!!  (Don’t you just love her glasses?)

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Therapy is going great – if I stop to think where we were, I get overwhelmed.

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We are working on our fears of going to doctors and dentists.  We are watching our siblings go  (and survive! – not to mock her fears).  Slowly, slowly, she is getting there.

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She loves to be outside!

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All dressed up for church – where she is rotten because she can be!

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She LOVES to mimic her big sister!

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She got the flu – and, I love this part, she only needed breathing treatments – not oxygen – not a hospital.  Totally awesome!

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She thinks she is totally big and wants to be involved in all big people conversations!

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Thursday, March 2, 2017

The Way She Prays

Every night I listen to Bella say her prayers.

We start our prayers with the phrase, "Dear Heavenly Father."

When Bella says it, it sounds like "Hello Father" or "Hi there Father."

Then she babbles on and on without me understanding a word, finally ending with a solid "Amen!"

I love it!!

Monday, January 23, 2017

Miss Independent

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My Bella is very strong willed – which is a good thing.  It kept her alive despite everything that she had to go through. 

But now, I may just go bald as I pull my hair out!

“NO! GO AWAY! STOP IT!”

She wants to do everything BY HERSELF!

Thankfully, her bus driver and school have noticed this as well, “Ah, I see Bella dressed herself today.”  Yeah.  Her pants were backwards.  Her coat was on upside down.

Today she was ready and I went to do a last second check and she had taken everything off and was trying to put on her ballet costume.  Well, sorry, but your school has a strict dress code, sweetheart.

Love my strong willed girl!

Tuesday, January 17, 2017

Cardiology

Today we visited with Cardiology.  I didn’t realize I was holding my breathe till we left.  Great sigh of relief!   Our girl is doing well – exactly the same as last year.

Mild to moderate regurg in the mitral valve

No pulmonary hypertension!

Everything is beautiful!  So so so so grateful!

And she’s getting better at the visits – I had to sit on her to do the EEG, but she allowed him to do the ECHO.  So very grateful for a kind and patient cardiologist!  :)

Happy report – yeah!

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Wednesday, January 11, 2017

Happy girl

Finally back to dance class!!
And to top it off, a cupcake!!!