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

Tuesday, September 16, 2014

NORMAL!

How often is that label slapped on my baby girl?

Ummm……never.

Except today!  So thrilled.

I have been feeling that Bella did not need to be on thyroid meds.  I know, DS kids have a higher rate of hypothyroidism than the rest of the population.  I know that she has had more labs on her thyroid levels than I care to count.  We have done nuclear medicine scans to even locate her thyroid at one point.  We have walked the endocrine road, but lately, I just wasn’t feeling it.

Talked to her Endocrinologist.  Well, that was a no go.  After she was decannulated, I asked to have as many of her docs moved closer to our home.  Shocking, I know.  Who doesn’t enjoy the commute downtown?  I got an NP and a doc that I just didn’t like.  Won’t listen and frankly, was hard to understand.  Crazy Mom who questions everything. How dare I?

So I was crazy and during the move just stopped giving her the med.  Lest anyone jump all over me, I watched carefully for signs and symptoms of low thyroid – and nothing.  I had the pills ready to crush and push into her tummy should I see so much as a stray hair on her pillow, a patch of dry skin, or extra fatigue. She was the same.

We got here and I visited with her new pediatrician about my concerns  - and she listened to me.  TSH and T4 labs were ordered and have just come back.  Her results are completely normal!  Wahoo!  So excited!

Now we’ll continue to monitor, but I really feel and the pedi agrees with me that this might be the cause, her abnormal results started during our ICU days.  And being on death’s doorstep can definitely have an effect on thyroid and thyroid function.  So did she need the med during all of that time?  Probably.  But this girl of mine has healed and her body is preforming its proper functions – and we are down one med and one doctor!  I am so grateful!

Thursday, July 24, 2014

July

Playing with blocks

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The Bouncy House – she loved it!

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New glasses – she won’t keep them on!

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Working with Miss Rosie, our OT                 Another kitchen picnic

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4th of July!                                                                     Hold me during the fireworks Daddy!

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The Japanese Gardens

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Tea Party

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Swimming

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These two love each other!

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Silly faces

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Saying good-bye to our Speech Therapist :(

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At the park and then the Museum of Art

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Sunday, June 22, 2014

Three Weeks of Bella

School work – how I’m freaking out about school being done!  We loved her class and her teachers!  Bella drove her sisters crazy by wanting to sit on Joy’s birthday balloons.  They were determined they would pop, but the girl doesn’t weigh anything.  She had fun!

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Last Day of School – so sad!  We have been so very blessed to have such a wonderful class with such fantastic teachers.  The bar has been set very high for al of her future educational opportunities! The parents got together and made this tray and bags with the kids handprints for their teachers.

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So, so grateful Bella got to be in this class!

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They had an ice cream sundae and lunch.

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Thank you Ms. Abby, Ms. Hernandez, and Ms. Hope!

Last day of school family picture!

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Dancing with Daddy

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Family Reunion at the Farm – she really wanted to play Foos Ball

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Flying with Daddy

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Happy to be Bella!

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Father’s Day!!

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Aunt Cyndi and family were in town!  We meet them up at The Woodlands Mall to ride the Merry Go Round.  Bella would NOT ride on any of the animals, but would sit next to me on the bench.  She loves her cousin Jacob!

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Another day we went to the Aquarium with both Aunts and their families and Grandma, Mandy and Nathan.  No way was she going to touch the sting ray, but she did enjoy the Ferris Wheel – go figure!  Waiting for the train.  She’s got some strong arms!

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Another showing – OT at McDonald’s    Another showing – lunch at Taco Cabana

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Another showing – Speech at the Park,       Another showing – McDonald’s

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Going to the eye doctor.  No, she was not this happy and cooperative.  She wanted nothing to do with the doc.  Three people to hold her down.  No wonder she hates doctors!  Her left eye is crossing and she is far sighted, so glasses here we come.  We chose mira-flex glasses because I’m sure she will rip them off her face and try to destroy them!

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Cute, crazy girl!  You know something that I think is weird?  Kids see Bella out in public or at school in her wheelchair and sometimes they ask, “What’s wrong with her?”, but more often than not, I get, “What’s wrong with her neck?”  Interesting to me because I don’t see her trach scar, but kids do – all the time!

These two sillies watching Netflix in Bella’s bed.

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We ended up with two adult tickets and one child ticket to the zoo.  So Big Sister, her friend, and Bella went to the zoo!

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Another showing – another escape, this time to the library

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Another showing – dinner out

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And finally an offer!  The girls celebrated by pulling out all of the buckets and dumping them on the floor.  It was so funny – they kept looking at me like, can we do this?  Are we going to get in trouble?

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We went out to see How to Tame Your Dragon 2.  It was a special needs showing.   Bella’s teacher, Miss Abby, came along with four friends from her class.  So fun to see everyone there! (Brother looks like he’s falling out of the Bella’s wheelchair, but he is belted, just checking out the wheel.)

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